Cancer Stories: The Art of Oncology (American Society of Clinical Oncology (ASCO))

Listen to ASCO’s Journal of Clinical Oncology essay, “At a Loss: Patient Deaths and Clinical Research Coordinators” by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials.

TRANSCRIPT

Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP (10.1200/JCO.23.00040)

As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient’s chart to coordinate study appointments and collect clinical information. When opening a patient’s electronic health record, a snapshot immediately appears on the screen with the patient’s medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient’s name], who is deceased. Date of death: [date].”

We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study.

In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors’ laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients.

CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works.

When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us.

As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient’s death has a profound impact on us.

We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden.

Knowing that patients with serious illnesses die did not protect or prepare us for the waves of emotion we experienced when a patient in our study died. Some of us have had personal losses after which we also thought: “Maybe I do not have the right to be upset”— a childhood friend we are no longer close to dies, or we learn that a good friend has had a miscarriage—and our grief is confounded by our feelings of guilt. We experience disenfranchised grief1: grief that is not openly acknowledged, socially accepted, or publicly mourned. For us, there is no place to grieve with the patient’s family or the clinical care team.

Over time, our grief builds up, and it is hard to find a way to release it. Friends and family do their best to understand, but because they do not work in health care, they can find it difficult to grasp the complex emotions we experience. We seek solace with each other, but lacking coping mechanisms or clear direction, we ultimately bury our grief to continue doing our job.

Oncology and palliative care clinicians routinely care for seriously ill and dying patients. To learn how they deal with their grief, we asked our Dana-Farber Cancer Institute study principal investigator and three palliative care clinicians (two physicians and a psychologist, who is a bereavement expert) how we could begin to process our otherwise disenfranchised form of grief. We learned that Dana-Farber Cancer Institute palliative care clinicians hold weekly bereavement rounds or remembrance2: a time carved out every week to read a poem or listen to a song and then share meaningful stories about each patient who touched their lives and had died that week.

We adapted the bereavement rounds for our laboratory group of CRCs and principal investigators. We spoke about each patient we had lost, sharing the things that most affected us over the course of our interactions with them. We spoke of Jack (names are changed to protect patient identities), who was beloved by everyone in the clinic. His hearty laugh could be heard throughout the halls whenever he came in for a visit. On the last clinic visit before he died, Jack’s appointment was delayed, and he sat in the waiting room for over an hour. When we offered to help find him a room, he stood up and offered a hug in gratitude. The memory of such a seemingly routine request stayed with us for weeks after his death. When we spoke about Jack and his family during these bereavement rounds, we were able to share the wave of grief that overwhelmed us, that grief we had kept suppressed for over a year. We also shared stories about James (names are changed to protect patient identities) and his wife; they met in college and had been together for more than 50 years. Throughout his treatment, James told us often how upsetting it was that his immunosuppression prevented him from spending time with his grandchildren in person. Our hearts broke thinking of his wife and the reunions with grandchildren that would now never happen. Surprisingly, speaking about patients in our studies who died felt like a welcome release; finally sharing these memories and the worries we had harbored since each patient’s death was restorative.

Bereavement rounds have been invaluable in processing the grief we experience throughout the year. We found ourselves wishing we had known of them sooner, although it would be hard for CRCs who do not work with palliative care programs to be told about them. Through our quarterly bereavement rounds, we have learned to foster healthy grieving processes, creating time to honor each patient and acknowledge their impact on us.

This investment in our health and well-being has been crucial to maintaining resilience in the face of challenges that our job entails. We feel cared for by the larger program and know it is investing in us as whole people. Our professional development now extends beyond Health Insurance Portability and Accountability Act training and Collaborative Institutional Training Initiative certification to include education in bereavement, burnout, self-care, and compassion fatigue. Direct supervision and mentorship around grief and loss incorporated into our routine check-ins and meetings have been helpful, as well as an open door policy with our supervisors for informal support. We frequently debrief in response to challenging interactions or situations, including the death of a patient.

The designation of this safe space has emphasized a culture of support in our team settings. Learning to lean on each other when faced with emotional experiences has become a core aspect of sharing regular study responsibilities, especially when a patient dies. One practical strategy which  has helped us is going on a grief walk. After learning of a patient’s death, we stop work and take a 15-minute walk, either alone or with a colleague. We give ourselves the space and time we need to begin our grieving process.

Losing patients is part of our job as CRCs, as it is for many health care providers. Implementing programs and routines to understand and lessen the emotional burden on us has helped us better navigate our duties while fostering the coping strategies we need to do our job well. We want to learn and to immerse ourselves in academic medicine, and to do this, we need the support of our research team and institutions if we are to navigate the grief we feel when our patients die.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Hermioni Amonoo, Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. In this episode, we will be discussing her Art of Oncology article ‘At a Loss: Patient Deaths and Clinical Research Coordinators’. 

At the time of this recording, our guest has no disclosures. 

Hermi, welcome to our podcast and thank you for joining us.

Dr. Hermioni Amonoo: Thank you, Dr. Shapira, for the warm welcome and introduction.

Dr. Lidia Schapira: Let me start our show by asking this very broad question, and that is how did this article come about? We normally have first-person reflections in Art of Oncology, but this is a group reflection pulled by collective first-person plural, and clearly, you played an important role. How did this start?

Dr. Hermioni Amonoo: So as you know, my line of research is trying to understand the well-being needs of patients with hematologic malignancies who are undergoing hematopoietic stem cell transplantation. So this is a really seriously ill group of patients who we are trying to understand what well-being looks like for them in the midst of a serious illness and quite intensive treatment with several toxic side effects and a prolonged recovery. And so in doing this work, unfortunately, a lot of our patients, even in our trials, pass away either from their diseases or complications from the treatment. And so I have noticed over the past few years that a lot of my clinical research coordinators who are young, 20-something-year-old, freshly minted college graduates, who are very critical to the work that we do, have to grapple with the loss that comes with working with our patient population. A lot of these individuals take on these clinical research coordinator roles because they want firsthand experience with patients, but that is one thing. But then working with patients who you bond with, even from mundane conversations, and then having them die was a huge sense of loss and frankly, a bit of a surprise for them. 

And so, as a psychiatrist, used to sitting with people in grief and helping them reflect different losses that they encounter, but I quickly realized that supporting my CRCs was a little bit more than even what my training had prepared me for and definitely, my training as a researcher hadn't prepared me adequately to be able to support these young clinical research coordinators. And so in our struggle, or I would say I've had a burden for this for several months, I would say a couple of years now. And so one of the ways that I struggle, I manage different burdens is to write about it. So I sort of shared the idea with my clinical research coordinators, a couple of them now, and they really caught on to the idea. And so we decided to share what our experience has been with this. And then I also reached out to a couple of colleagues in palliative care and the director of bereavement services at our cancer center to also support us, or support me to support our clinical research coordinator. So that's sort of how this idea came about. And that's a really long-winded response. I'm sorry.

Dr. Lidia Schapira: It's so interesting to think about this, writing as a tool for processing a difficult experience is something that we often discuss with our authors for first-person narratives. What makes this entry and this essay so original, in my opinion, is that this is a group effort and you have so beautifully spoken about the need to, especially for these very young 20-something-year-olds, to process this very difficult experience of grief. And in addition to this manuscript, you speak here of doing this through some form of bereavement rounds, something that you've taken from a clinical setting where we find that it helps support people working with patients who are very ill and who experience a lot of losses to the setting of a research lab. Tell us a little bit about how that idea came about, how you're implementing this very original and useful tool in your own group.

Dr. Hermioni Amonoo: It started out with, before instituting what we call remembrance rounds, my CRCs would typically call me whenever they heard of a patient's death. They will literally call my cell phone, I'll stop everything and sort of take a moment of silence with them and ask them how they were doing and check in via supervision and things like that. But it definitely felt inadequate considering the amount of pain that they experienced with the whole process. And so our palliative care teams have this remembrance of bereavement rounds every week. And obviously, on a palliative care service, they have a lot of patient deaths per week where pretty much every clinician on the team would get together for half an hour to an hour. You have different members leading these rounds where someone will share about a patient who had passed away, a memory or something about the patient, and the whole group will reflect on it. 

For our purposes, we thought it would be great to adapt that for like a lab setting. Fortunately, we don't have a huge volume of patient deaths per week but we realized that a month or every three months we would have close to between five to ten patients who would die from our trials, which is, again, a lot. And so, in conversations with our Director of Bereavement Services and our palliative care colleagues, we picked that time frame every quarter to get together as a lab where the names of patients in our trials who have passed away would be shared. And different members of the team who have interacted with a given patient will share, like a memory, either from a conversation, a poem, or a song, or something that brought to life the individual as a way to just process and acknowledge the loss that comes with losing patients. And I think it's also even more critical in the lab setting because, unlike the clinical setting where there is some form of a closure because as a clinician you may be able to call the patient's family and you sort of have permission to do that. But in the research setting, my CRCs felt like once they recorded the patient had died, they had no business in calling family members or doing anything like that. And so it was helpful to create the safe space to process all of that. 

In addition to the remembrance rounds, we also arranged with our bereavement services in the cancer center where there are actually cancer center bereavement cards where clinicians could write notes to families. And so our CRCs have started doing that as well, where we could use the cancer center template and if they wanted to, could write a note to the family as a way to share how they were feeling about the situation with the families as well. So that is something that in addition to bereavement rounds, we started doing which is also helpful.

Dr. Lidia Schapira: I was very moved and I was very struck, as were the reviewers, by a few things in your article. One, is that you take responsibility for supporting your research assistants. Two, is that you take on what I will say is an almost mentorship role for helping them process this in a way that sort of still leaves them engaged with the content material and stimulates their growth as professionals. And hopefully, some of them will be future medical students, physicians, and maybe even oncologists and psychiatrists. In fact, our reviewers wrote that after reading your paper, they had implemented similar protocols in their own labs and that's pretty amazing. So tell us a little bit more about how your efforts, you think, contribute to creating a more supportive culture in general in our workplaces, both in the lab and research setting, but also this translates into clinical settings.

Dr. Hermioni Amonoo: So I think maybe more so than others, I see my clinical research coordinators as really critical partners in the work that we do, especially in clinical research. They are the face of the trials that we do in some ways. They meet all our patients who are eligible for our studies. And they do spend a lot of time with them, especially in the longitudinal studies that we do, where there are multiple assessments. They are calling patients, they are speaking with them in waiting rooms, and they are really essential to a lot of things that we do. When I think about how much we compensate them monetarily wise, it really isn't a lot for really talented college graduates. And so I think, for me, I view an intangible way of making this whole experience worth it, based on how much they contribute to my research program, is to really mentor them. I think as an individual, mentorship has been very critical to my own career development, and working and mentoring CRCs is one way that I pay it forward.  

And I think because that is very much a part of our lab and our team culture, the CRCs are also willing to go above and beyond and really contribute to the work that we do. Because there is so much that as a principal investigator, you can't always be with them 10 hours in the day that they are working. But when you really get them to latch onto the heart of what you're doing and knowing that they are also going to grow professionally and explore different things about medicine, in general, has been really rewarding. In fact, I've had research coordinators who came in thinking they wanted to do Ph.D. in psychology programs, but then in interacting with patients, they have expressed interest in potentially pursuing nursing. I have a CRC now who came in thinking one thing and is going to nursing school this summer. And so I think there's really a great opportunity to expose them to the breadth of clinical experiences like in medicine. And one way to do that is to be intentional about looking for opportunities to allow them to see things beyond what they even thought they wanted to gain out of the experience because we can't pay them as much. 

Dr. Lidia Schapira: Let me tell you that after this podcast you will be getting emails from people who want to work with you. It sounds like you're an ideal mentor and so collaborative and so generous in your mentorship. It's amazing. I was also thinking, as you were speaking about the people involved with patients and families who are struggling through very difficult times and die, some of our staff, not the ones involved in research, but the people who book appointments and get to know the patients and listen to their stories, they also need a place to grieve and they need to be notified when patients die. And most of us don't have sort of a system or a process for thinking about that, and maybe we should, taking a page from your playbook here of thinking about all of the people who interact with patients and all of the people who are themselves impacted by what happens to these people we take care of and many of whom are so generous as to participate in our research studies. So let me end with a forward-looking question and that is do you have, as a researcher, any interest in studying this?

Dr. Hermioni Amonoo: Again, thank you for your really generous and nice comments about the mentorship. And I totally agree with you that there is definitely room to care for a broader range of our clinical team, not just people who have hands-on clinical duties or interactions with our patients. And I think it's even more pertinent in these times post the COVID pandemic, where a lot of individuals who work in clinical settings and again, COVID being the great revealer, it sort of uncovered how a cross-section of hospital staff are really impacted by different difficult things that happen in the hospital. So I think there is a lot of room to even look at how different staff manage loss and grief of patients. And patients dying is just one form of loss that we all have to grapple with as clinicians. But I think it's an area that a lot of people haven't even considered before, and I think there's a lot of room to study the impact of some of the things that we are doing in a research setting. I am open to that. I would need collaborators to do that, because to be able to do it well, I think it's not like an area of expertise yet. I feel like I am growing in this space myself, which was part of the impetus for reflecting in this perspective. I know the director of bereavement services has also been open to extending this to other labs in our cancer center and so I am totally open to that. And if anyone is interested in exploring this in a more rigorous and robust way, as it does deserve, I think I'm open to collaborating with others to pursue this to its fullest. 

Dr. Lidia Schapira: That's good for all of us. And my last question, Hermi, you've been so generous with your time, is this: if you look back or think back about your early days, your formative years as a student, or maybe if you also worked as a research assistant, did you have a mentor who took the time to listen to how these experiences were falling on your soul? Not just whether or not you showed up for work every day, but how you were thinking about this and taking stock of your own losses.

Dr. Hermioni Amonoo: So yeah, I think I have had a village of mentors who have been really invested in me as a human being first beyond work-related interest, and I think that has been really instrumental. And I think my mentors have had to explore some of these topics with me because of my own personal losses and I think having family deaths over the course of my training. And so I've been really privileged to be a beneficiary of mentors who really focus on helping their mentees grow. Not just in a technical way or a career development or professional sense, but really being attuned to how much, for lack of a better word, someone being well in their soul and in their mind, really is interconnected to how well they do professionally such that you don't burn out or lose the sense of joy in the things that we are doing. So I've definitely been a first-hand beneficiary of that, and my psychiatric training probably also makes me a little bit more attuned to those things than probably in other fields of medicine.

Dr. Lidia Schapira: Well, thank you for a wonderful conversation. Thank you for the work that you do and for sending your work to Art of Oncology, the JCO. So until next time, thank you all for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

 Dr. Hermioni Amonoo is a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute.

Listen to ASCO’s Journal of Clinical Oncology poem, “Etch a Sketch” by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. The poem is followed by an interview with Tong and host Dr. Lidia Schapira. Tong shares her thought process behind her fictional poem, where a mother and daughter receive bad news of a leukemia diagnoses.

TRANSCRIPT

Narrator: Etch a Sketch, by Wendy Tong, MD 

You are only seventeen when you first learn its meaning.
Just moments before, you sit in a white-walled room
with your mother by your side. You have been losing weight.
You have been feeling dizzy; you have been bedbound with colds.
You have been waking up with the taste of blood,
finding dried crimson on your pillow
and tiny red freckles smattering your skin. 

In the middle of the waiting your mind drifts back
to when you were younger, when the thing you liked best
to play with was an etch a sketch. You would maneuver the knobs
to draw lineographic pictures with an invisible stylus—a whole world of possibility pixelated into a gray two-dimensional screen.
If you made a mistake, no matter. The image would blur
with a few simple shakes; if no one saw it, did it ever really exist? 

When the doctor returns, you try to brace yourself but find
your defenses dissolving as he delivers the message. This is the moment you learn the meaning of tragedy. It is a fortune-telling, it is a sentence.
Your mother’s face pales. You simply stare at the hands in your lap—
hands that have just learned to love. Hands that have fumbled to make art; hands that could not help but hold onto hope. A whole world of possibility suddenly goes dark. If only this screen could be shaken, this gritty image erased.

As you watch your mother’s tears fall, you retreat to a safer place
inward, where you are free to sketch the image of the two of you
at the kitchen table just that morning, before things changed. 

In a single movement you pencil in the harsh slant
of your own angled cheekbone. In another, you etch worry lines
into your mother’s forehead for age to deepen.
This is not the future that she dreamed for you.

But there are things you cannot capture with two-dimensional strokes.
What of the way the sun had hit the glass saltshaker, or the slowing of light. The way refraction had scattered rainbow flecks across your mother’s cheeks like celestial confetti, the grace of an unseen angel.
The way the coffee was still warm against your lips. These are the things, you realize now, that will sustain you. You reach for her hand and she grasps back, tightly.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. In this episode, we will be discussing her Art of Oncology poem "Etch-A-Sketch." 

At the time of this recording, our guest has no disclosures. 

Wendy, welcome to our podcast, and thank you for joining us.

Dr. Wendy Tong: Thanks so much for having me today.

Dr. Lidia Schapira: So let's start by talking a little bit about your writing, you are going through your medical training, tell us what writing does for you.

Dr. Wendy Tong: I first started getting into writing poetry, or writing in general, about halfway through medical school. I was always inspired to write after a specific patient encounter, sort of as a way to capture something human that I had noticed about them - a specific detail, mannerism, or attitude - something that I wanted to appreciate and remember. When I started, poetry was a good way to capture those little glimpses separate from writing more narrative essays where  you are able to get in more of the medical details, history, and the whole complex course. So, I've found solace in being able to reflect on experiences through both mediums. But I do find that it's a good way for me to process how patient encounters went or what a specific patient meant to me, and it's a way for me to remember them as well.

Dr. Lidia Schapira: Let's talk a little bit more about poetry and how it allows you to get these glimpses or perhaps capture an emotion or a scene. Tell us a little bit more about that choice to tell a story, in this particular case, a moving scene, through poetry.

Dr. Wendy Tong: I can still remember the very first poem I attempted to write. It was in medical school, I was actually rotating on a palliative care elective. And this very sick cancer patient, she was a very thin and cachectic, but the first thing I noticed when we walked into her room was she had these amazing nails - glittery, long, and gold and they’re beautiful. So that’s something I noticed and I commented on, and she said it’s what makes her feel human still and what still keeps her going, even though she was so sick. That detail stuck out in my mind, and after I left the room, I ended up typing up a little blurb about this detail I noticed on my phone. And that ended up becoming my first official poem I’d written about a patient, first poem in general, actually. When I'm able to be in the moment or in the present and notice and observe things, I think that's where the inspiration strikes so to speak. It's something human, it’s some kind of connection that I like to reflect on and remember. So, I think that's what makes poetry so powerful and helpful in those ways. Sometimes I don't have a full story to tell, or I just want to capture one moment and how it made me feel. So I think poetry is really powerful in that way.

Dr. Lidia Schapira: You're making a very good case for narrative and medicine and that is all about observation and, sort of as you say, capturing it in whatever art form you use. So my question now is a little bit about that creative energy that seems to be flowing from you, that maybe starts in a moment of connection or in a moment when something just captures your imagination, and then you express it. Tell us a little bit about how you've incorporated that into your life as a physician, maybe starting as a medical student. I'm going to the "Why do this?" What does it do for you?

Dr. Wendy Tong: That's a great question. I'm an only child and grew up loving reading and being very into books. As a child, sometimes my parents would come in and be like, "Why is your light still on?" So I would block out the light from under my room because I'd be up all night reading. When I was young, I wanted to be a writer. At that time, it was just novels or whatnot, but I never really pursued it. So I would take a creative writing class here and there in college, but never found the subject material that made things click for me so to speak. And I remember in my gap year before applying to medical school, learning about the field of narrative medicine, which is still ever growing, and reading Atul Gawande's books, obviously, non fiction, but it opened up a whole new world for me, combining these two passions - writing and medicine. So I don’t think the inspiration struck until having actual patient encounters. The first half of medical school was a lot of textbook learning and classroom. And it’s not exactly inspiring. 

It wasn't until my actual medicine rotation that having the human component and specific encounters were very inspiring so to speak. I think it’s one patient for me who made me decide to go into internal medicine, and also later I realized is inspiring me to want to become a palliative care physician actually. And the first patient I started writing about is also the same patient who, in my third year of medical school and on a general medicine rotation, the first patient I’d grown very close to and who passed while I was helping take care of him. We are able, as medical students, to spend a lot more time with patients. 

So I remember in the early mornings when it was still dark out, I’ll go into his room while I was pre-rounding and chat with him. He would tell me about how tired he was. He was quite sick. He had neo pulmonary hypertension and high output heart failure, and all these things, he had a chest tube in. And each morning, he would get worse and worse. He would tell me how bothersome the beeping was and how much he hated needle sticks. It was like a harbinger of what was to come because it seemed like he knew what was going to happen. One morning, he asked me about physician-assisted suicide he asked things like, “Why me?” It was a very emotional time, and I still think about it today. That day, our team had gotten palliative involved. He had wanted his code status changed to DNR, and within 24 hours, he had passed away. 

I remember when I found out, I burst into tears in the resident room, and I just kept thinking about this patient. And looking back, I think it was in those moments of connecting with him and his wife and family that– I'm not a religious person, but it almost feels like a spiritual or sacred feeling in the room sometimes when you’re talking about life or death. Sometimes you just get this feeling, and I think that's the feeling that both makes me want to write and pursue palliative care.

Dr. Lidia Schapira: I think that's a very beautiful, sincere, and very authentic pitch for why it's really important to allow that space - the space of absorbing what just happened, sort of celebrate the connection, in your case, maybe even memorialize a patient. I wonder if you find that the medical culture and your attendings are supportive of this, or it’s something you sort of push to the side and keep private.

Dr. Wendy Tong: Going back to that day when I burst into tears at that moment, some residents in the room, or my residents were very supportive of me and told me to take care of myself and go home for the rest of the afternoon. Another resident, I think I overheard saying, like, “I just wonder what had happened.” Totally normal reactions. The next morning, what I really appreciated was my senior resident and our attending had let us have a moment of silence before we started rounds. So we all stayed in the room. We reflected a little bit about what the patient meant to us and how his clinical course had gone. We were able to share a moment of silence, which I found really impactful, and I was really appreciative of. That's something I've also noticed on my medicine rotations here or when we are in the ICU and having a lot of stuff happen, my team, and now I am a senior resident, but as an intern, my senior residents would be quite supportive. I just think those moments of silence are so simple to do and very quick to do, but they're really impactful and show that people are aware of how hard this job can be sometimes and that patients who we lose do deserve that moment of respect. Whenever that happens, I'm very grateful for it. It's something I hope I will do myself as a senior resident and in the future, to encourage everyone that it's okay to experience those emotions, and it's okay to pause and reflect. We don't always have to keep moving forward without pausing.

Dr. Lidia Schapira: Wendy, I'm very impressed hearing you talk about how you process the emotional intensity of some of these connections. I wonder if you've shared your poetry or your writing with patients.

Dr. Wendy Tong: That's not something I've done before yet. Many of the poems I have written are about very sick patients. Oftentimes, it's patients I happen to meet while I am rotating on a palliative care elective. I think it says something. One, it's just being able to have the time and the space to notice and sit with people and have those moments of connection. And then to write them down and process it.

Dr. Lidia Schapira: What I'm hearing you say is that you're drawn to palliative medicine. I wonder if that's because in that specialty, we value being with patients and accompanying them. How does that sound to you?

Dr. Wendy Tong: That sounds totally right to me. I think so much of what brings a lot of us into medicine is we say we want to help people. We enjoy speaking with patients and making those connections. I will say, I have noticed that when I'm very busy, very burnt out, and tired, I don't have that spark in me or the motivation or inspiration per se  to want to write or to create. So I think it says something that to be at our best and to be emotionally well and able to create, it's best if we are in a good mental space. But for me, when I think back about what drew me to medicine, it's those moments. And I do think palliative care as a specialty is one that intentionally fosters those moments and gives us a little bit more time to do so.

Dr. Lidia Schapira: Wendy, can you help our readers and our listeners understand your poem a little bit more? For some people, reading poetry is like perhaps reading a foreign language. They're not as familiar. Tell us a little bit about this. Bring us to the bedside and what happened there.

Dr. Wendy Tong: Usually, the poems I write would be about specific patients that I've had and specific details about them. This is actually the first fictional poem that I've written in the sense that it's about breaking bad news, and it's written from an imagined perspective of a young leukemia patient hearing their diagnosis for the first time. As clinicians, we do have to break bad news to patients, not infrequently, though it's never easy. And, of course, it's a skill that I hope to work on for quite a while. At some point, I do think we become immune to the emotional heaviness of it, and we might forget or not fully realize what it means or what it truly feels like as the patient hearing bad news for the first time. Especially for younger patients, it's likely their first time hearing something that's often life-changing. So this poem is sort of a reminder, I think, for us as clinicians to try to stay mindful, empathetic, and considerate when delivering bad news, no matter how many patients we've seen that day or how tired or burnt out we are or whatnot. In this poem's case, we don't know exactly what the doctor said, but maybe they could have delivered it differently. And you can say there's a balance between beating around the bush and delivering the message, but there are also nuances in how you deliver it.

Dr. Lidia Schapira: And in this poem, Wendy, you also bring out the delicate balance between the mother and the patient at a very tender age. So tell us a little bit about that. It's more nuanced than just about breaking bad news. It's how the news lands on the mother and the child and how they're responding to each other. Where did that idea come from?

Dr. Wendy Tong: People are still living at home as teenagers, and sometimes parents are still taking them to doctor's appointments. And I think it's important, in general, for patients to have loved ones nearby as support when they're at important visits or hearing bad news. And in this case, I guess it's like a dual response. The patient is hearing the news, the mother, they're also watching their loved one hear the news, but they are also a little distant from it because I think the news is quite shocking. And so they kind of have to retreat a little bit inside. That's kind of what the last two stanzas are about. The lead-up is the patient kind of knows something is going on, but doesn't really know what it is. But actually hearing the words, the diagnosis, having that as a shock, and having those words change their imagination of how their future was supposed to go. So the last two stanzas are sort of a reflection, the patient going to their safe place and thinking about the things that hold them together, whether that is their relationship with their parents or their loved ones, and who are their supports. Small things about what I think makes life important to them or what makes life a good life to live.

Dr. Lidia Schapira: Finding meaning, also, in the experience, in sort of crystallizing for themselves what their idea is of their own future, which has just been shattered probably by the news that was delivered. Does that sort of get it? 

Dr. Wendy Tong: I think so. I think so. The poem doesn't go into prognosis or what life will look like. And oftentimes we know now, depending on your type of leukemia, your cancer, your course can look drastically different based on what treatments are out there. But this poem was just trying to get at that initial delivery of the news and how this patient processes it and reaching for the support she has to get her through it.

Dr. Lidia Schapira: So before we wrap up, I have two questions, and the first is very simple and may not have an answer yet. Does writing poetry make you a better doctor?

Dr. Wendy Tong: I would like to think so. I want to be in a space where I am thriving ideally. I know residency, with its ups and downs, may not always be that place, but I hope to have a career where I feel fulfilled. And part of that also means, of course, doing what I love to do. But that also involves being inspired to write and to create. There is something there for me that I know I'm in a good headspace when I want to create. 

And the other piece of it, I do think writing poetry and writing, in general, just helps me pause and take things slower. And that act of thinking about what happened, writing, and editing makes me more appreciative. And it does help me remember patients more, I believe. It's like the act of metabolism itself is helpful, I do think. And I hope it would make me a better physician and more observant and more empathetic. That's my hope.

Dr. Lidia Schapira: And tell me, Wendy, we can write to reflect, to process, but then the decision to publish and share with people you don't know is a whole different step. What made you decide that you wanted to share this with the world?

Dr. Wendy Tong: When I was younger and trying to write things, whether it was short stories or fictional creative work, I was always too scared to show anyone. Writing feels quite vulnerable, and it's like the inner workings of my mind. Usually, I'm a private person and like to protect that. But for me, when I read good poetry, it's the simple language but it’s something about the choice of words and their specific arrangement that makes me feel something. And when I feel a certain way after patient encounters, it makes me want to try to capture and metabolize and also share that feeling with people I don't even know per se. But I think for me, poetry is about conveying not just a message, but a feeling across- that feeling is one of the reasons I wanted to go into medicine, and I think it’s going to be one of the feelings that will keep me going.

Dr. Lidia Schapira: And we sure hope it does keep you going. Thank you on behalf of our readers for sharing your work with us. It takes the reader to an emotional space, and I think that it’s a gift that poets have for their readers because it allows the reader to project onto their own emotional space the feelings that they’re having in response to your work. So thank you for that, and keep writing. 

Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

Dr. Wendy Tong is an Internal Medicine Resident at McGaw Medical Center of Northwestern University.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnoses or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Hello. Welcome to "Cancer Stories." I'm Dr. Daniel Hayes, a medical oncologist, and translational researcher at the University of Michigan Rogel Cancer Center, and I've also been the past president of ASCO. I'll be your host for a series of interviews with the founders of our field.

Over the last 40 years, I've been fortunate to have been trained, mentored, and inspired by many of these pioneers. It's my hope that through these conversations we can all be equally inspired, by gaining an appreciation of the courage, the vision, and the scientific understanding that led these men and women to establish the field of clinical cancer care over the last 70 years.

By understanding how we got to the present and what we now consider normal in oncology, we can also imagine and work together towards a better future, where we offer patients better treatments and we're also able to support them and their families during and after cancer treatment.

Today, My guest on this broadcast is Dr. Samuel Hellman, who is generally considered one of the fathers of modern radiation oncology in the United States and frankly, worldwide. Dr. Hellman is currently a professor emeritus at the University of Chicago Pritzker Medical School, where he served as the dean from 1988 to 1993. And he's been the A.N. Pritzker Professor of the Division of Biological Sciences. He's also served as the vice president of the University of Chicago Medical Center.

Prior to moving to Chicago in the late 1980s, he had previously been physician in chief and the professor of radiation oncology at the Memorial Sloan Kettering Cancer Center. He served there from 1983 to 1988, and he was also chair of the Department of Radiation Therapy at the Harvard Medical School, where he served as the co-founding director of the Joint Center for Radiation Therapy.

Dr. Hellman has authored over 250 peer-reviewed papers, and he's been one of the co-editors of one of the leading textbooks on oncology, Cancer, Principles and Practice.

Dr. Hellman has won many awards and honors, including being named a fellow of the National Academy of Medicine, formerly the Institute of Medicine, and of the American Association for the Advancement of Science. He is frankly, one of the few individuals to serve as president of both the American Association of Cancer Research and the American Society of Clinical Oncology, for which he was actually, I believe-- correct me if I'm wrong Dr. Hellman-- the first radiation oncologist to hold that position, which he served in 1986 to 1987. Dr. Hellman, welcome to our program.

Thank you for having me.

I hope I got all that right. Your introduction has taken longer than some of the others. You have been so prominent in the field. I have a series of questions. The whole point of this is sort of like Jerry Seinfeld's Riding in a Cab with Friends. I've always said, if I had an opportunity to right with some of the giants in our field, what would I ask them during a cab ride? So I get to ask the questions, and you get to answer.

I know you grew up in the Bronx. Can you tell us a little bit more about your background? I'm particularly intrigued about the fact that a boy from the Bronx ended up at Allegheny College in Pennsylvania. Why'd you go there? What was your interest? Was it always in science and medicine, or did you have something else in mind?

OK. Well, start with the Bronx. I was born in 1934 in the Bronx in a nice part of the city, which doesn't often go with descriptions of the Bronx today, but it was at that time. And about well, 1950, which was when I entered my senior year in high school, I had gone to high school at DeWitt Clinton High School.

And as I say, my senior year, we moved to Long Island, and I spent my senior year at Lawrence High School. The important part of this is that Clinton had about 4,500 to 5,000 boys, and Lawrence High School was much smaller and most importantly, coeducational, and that made me very much want to go to a smaller school for college and definitely one that was coeducational.

And so my mother and I took a little tour of colleges not too far from New York, but Allegheny was the farthest, I think. It's in Western Pennsylvania, very close to the Ohio border. And it was a beautiful day. I had a very nice two people showing me around, and I became enamored of the place. It was a very good fit for me, but I must say, my method was not a very analytic one, but that's how I got to Allegheny College.

And was science and medicine in your thoughts then, or did you have other things that you thought you'd do?

No, no. I was a middle-class Jewish boy from the Bronx. You're programmed to be interested in medicine. The old comment was, you know what a smart boy who can't stand the sight of blood becomes? The answer is a lawyer. And I was not offended by the sight of blood.

So I actually heard about your decision to go to SUNY Upstate Syracuse and the serendipity involved. And I'm always struck by how so many of us have what we plan and what we end up doing. Can you give us that story? I though it was really fascinating.

Well, I'm not sure what part of it you want, but I went to Syracuse Upstate because I won a state scholarship, and I hadn't applied to any New York state schools. And fortunately, the medical school advisor and a former Alleghenian, who was at Upstate, arranged an expedited interview, et cetera. So anyway, that's why I ended there.

Why I ended up in radiation oncology--

Well, that was my next question is, how did we get lucky that you decided to go into oncology?

Well, I interned at Boston at the Beth Israel Hospital, which was essentially very oriented to cardiovascular disease. Our chairman was a renowned cardiologist. He was the first one to use radioactive tracers. He used radium, as it turned out, and there is an award given by the nuclear medicine society. Their big award, their annual award is the Hermann Blumgart Award, and Blumgart was my chairman.

And Paul Zoll, the external defibrillator inventor, was there. Louis Wolff of Wolff-Parkinson-White syndrome was there. So it was a cardiac place. And internal medicine was what I wanted to do, but my father was quite hard of hearing and had a lot of trouble making a living, because he was so impaired. And electronic devices, of course, weren't available at that time.

And it was widely thought that otosclerosis which is what he had, was a hereditary disease. And so I was discouraged somewhat from entering medicine, not being able to be sure I could use a stethoscope.

Parenthetically, I have never had any trouble, and the disease is no longer thought to be hereditary but rather the sequelae of infectious diseases, either diphtheria or influenza. This was the great influenza epidemic. The two, one of those two.

But anyway, that's what he had, so I sought to do something else. And I was a little bit put off by taking care of disease which we really could not alter the course of. We could modify it. We could palliate, but probably if I were more dexterous, I would have become a surgeon. But I wasn't, and so I decided I didn't know what to do. I'd take a radiology residency and see where that led.

This was late in the year, and there were no radiology residences, literally, in Boston that were available. But a new chief had come to Yale, and he was starting a new program. And one of radiologists in a neighboring institute told me go there. So I did.

Well, he turned out to be a radiation oncologist, and he, Morton Kligerman and Henry Kaplan, were the two chairmen of departments of radiology who were radiation oncologists. And Henry had been at the NIH and got them to, with the National Cancer Institute, I guess, to start a fellowship program to encourage radiation oncology. And Kligerman applied for one, got one.

I was there. I was captivated by the opportunity to do some curative treatment. I was a chemistry major in college, and physics and chemistry were things I enjoyed. Sounded like a good choice, so that's what happened.

So there could not have been very many specific radiation oncology fellowship programs at that time in the United States. Is that true?

Yeah, very much true. The ones that stood out was, I say, Henry Kaplan's. There was a very good one at UCSF. And there was one in Penrose Cancer Hospital and one at the MD Anderson, and those were the ones.

So your decision to go oncology then, really your decision to go into radiology-- diagnostic radiology originally, sorry-- didn't sound like you were--

Not really. I took a radiology residency, because I thought it would be helpful whatever I decided to do. I really didn't expect to go into diagnostic radiology, but I figured that's something I could do. I didn't have much training or any training in that before. There was a great dynamic radiologist at the Beth Israel Hospital, and he captivated me. And so I figured, there's a lot to learn there, and I'll try it.

I think a lot of the younger doctors don't realize that the two were together for a long time. What's your perspective of the split between diagnostic and therapeutic radiology-- I've actually heard you talk about this, so I think I know what you're going to say-- and bringing them back together?

Well, I was a great proponent of it. The whole fields are entirely different. But having diagnostic radiology is extremely helpful in radiation oncology, because we depend on images to determine how we treat, where we treat, and so forth, so it was there. But they were interested in entirely different things.

And just parenthetically, when I took the Harvard job, I wasn't going to take it unless I had a promise that we could start a Department of Radiation Oncology. Shortly after I came, and the decision was made with just a shake of the hand that, after a year or two, I'd be able to do that, and that's what happened.

Actually, that segues into another question I had is I was looking over your background. I met you first when I was a first-year fellow at the medical oncology. That was 1982, by the way, a long time ago, when it was still the Sidney Farber.

And I'd heard about your legendary efforts starting the Joint Center and also your teaching methods with your own residencies. But you were rubbing shoulders with Sidney Farber and Francis "Franny" Moore and Tom Frei. That must have been pretty intimidating for a relatively young guy trying to start a whole new department. What was the impetus behind that?

It was an interesting experience. Dr. Farber was, of course, the dominant figure in cancer at Harvard, and nationally, he was one of, if not the great leader. I mean, but he was a difficult man, and I don't like to speak disparaging, but we had a rocky relationship.

When the Joint Center-- I'm getting ahead of my story, but it's appropriate to this question. When the Joint Center was started, it was started by Harvard Medical School, and the dean for hospital affairs was a man named Sidney Lee.

Dr. Lee had formerly been the head of the Beth Israel Hospital, the director, not the chairman of medicine but the director. And he got the idea that all the hospitals in the Harvard area were relatively small, the Mass General was across town and quite large, but that was not true for the Brigham or the BI or the Deaconess or what at that time was the Boston Hospital for Women.

And so he got them all together. So there were those, and I think I left out the Children's, but Children's was amongst them, as well as the Sidney Farber, as you say. Or at that time, it wasn't called that. It was called the Jimmy Fund, but that's another story, and one you know better than I, I suspect.

But anyway, those six were to get together when I started the Joint Center. Because Dr. Farber and I had so much difficulty with each other-- he wanted really for me to be reporting to him and being part of the Jimmy Fund but that wouldn't have worked with the other hospitals. He was not liked by any of the places, including Children's, which is where he was the pathologist.

So those six initial institutions, when we finally came to sign, turned out to be only four because the Children's wouldn't come in, and the Jimmy Fund wouldn't come in. For a number of reasons, two years later, they acquiesced, mostly because we were successful, and they were without supervoltage treatment, and it was just not sensible for them not to join. But that's my relationship with Sidney.

Franny Moore is a different story. Franny Moore was an internationally-known surgeon and expected to have his way, but he was very graceful, very nice. I had very few disagreements with him. He expected, and I think, deserved certain deferences. Sydney did, too, but it just made it too difficult to do that but Franny was not that way.

Franny and I came to the treatment, conservative treatment of breast cancer from different points of view. He didn't agree with it, but he was entitled to his opinion, and he was fine.

Tom is a different story. I got there ahead of Tom, and he came, and if anything, I helped out Tom, although he was much senior. Harvard has its own culture, as you know, and he needed at least an introduction. I mean, he sailed along fine after that.

And in fact, at one time, he and I wanted to start a joint residency program. It was to be a four-year program, which would have people take two years together and two years in their respective specialty. But the boards were not in agreement, so it was dropped. But Tom and I always got along fine.

Actually, that raises one of my other questions. I spent a lot of time in Europe, and the field of so-called clinical oncology still remains, combining radiation and medical oncology. In fact, they style it as a particular specialty in Great Britain. How did it evolve not that way in the United States?

Radiation oncology went off on its own. And I think you had a lot to do with really professionalizing radiation oncology as a specialty in this country. Is that not true? I'd be interested in your perspectives on this, too.

Well, I should parenthetically say that I spent a year in the National Health Service in 1965, while I was a fellow at Yale, in clinical oncology at the Royal Marsden Hospital, their major teaching hospital for cancer. And I always believed in the joint efforts of a non-surgical oncology program.

You can include the surgeons, mostly because their lives are so different and their technical training is much more extensive, but you can work closely with them, and I've been fortunate to be able to do that. But medical oncology and radiation, in my judgment, would be better off close together.

And your comment about me and ASCO, being the first president as a radiation oncologist, and I never call myself a radiation oncologist, at least not initially. I always call myself an oncologist. But I do, I agree and then describe what I do as radiation. But I agree with you, they have the best title-- clinical oncologists.

And why it occurred the way it occurred, I'm not sure. I know we started in radiology and medical oncology started in hematology. I mean, the real revolution, and leaving aside Dave Karnofsky and his work, the real changes occurred in acute leukemia. And the real founders of the specialty, Dave was surely one of them, but a great many of them were all hematologists, leukemia doctors, and it grew from there. It grew out of hematology. And a lot of major oncology papers were in Blood, the journal Blood before they were in JCO.

So that's the best I can do with it. Our big thing was to separate from diagnostic. Getting closer to medical oncology is much easier, because we have the same book. You said I wrote the textbook with Vince and Steve, and so I did. And that was very easy. We spoke the same languages. We saw the same things, not completely. I saw more head and neck. Vince saw more of the hematologic malignancies, but the rules were similar. It was no-- it was easy.

And I've heard Dr. Frei-- I trained with him when he was alive and obviously, Dr. DeVita talked about what it was like to give chemotherapy when they started. And how we really professionalized, in many ways, and split up giving chemotherapy, the different responsibilities.

What was it like with radiation oncology back 40 years ago? I mean, how did you-- the safety issues, were you all cognizant of the safety issues related to radiation at the time? How did you do your planning? What was that like?

Well, safety was-- Hiroshima made everybody know a lot. In fact, if anything, we were more conservative than we probably needed to be because of radioactivity being an evil and all the things that happened after '45 and at Hiroshima and Nagasaki experience. And so safety wasn't a problem that way.

But there were a lot of people in the field who were using the field, who are not radiation oncologists. Some of them were radiologists, diagnostic radiologists and did it part time. They had a cobalt unit, before that, just an orthovoltage, conventional energy, much less effective and more damaging.

And also gynecologists, and when I visited Memorial Hospital early on in my training, and the surgeons would send a prescription blank, a regular prescription dying down to the radiation therapist. And that's what they were, technicians, or often were.

And they may have differed with the prescription but only by being careful and discussing it with the surgeons and convincing them that some change should be. That's very different.

How was the planning done? How was the planning done?

The planning was fairly primitive. Well, most places had a physicist, usually a physicist, who did both diagnostic machines and conventional radiation oncology, and they were important in that department and those people subspecialized, too.

And in fact, when I came to Boston in 1968, Herb Abrams, who was the new chairman of radiology-- he's the one who chaired the committee that selected me-- but he and I jointly started a physics department. So it was still in diagnosis as well as therapy, but we realized that wasn't a good idea and separated.

So physics was evolving, but treatment planning before supervoltage, and even with supervoltage before multileaf collimators and a lot of the newer, what then were newer techniques, was reasonably rudimentary. When I did my residency, we did our own planning, and usually, it got checked by the physicist but not all the time.

It's a lot different now.

Yes, it is.

I want to turn this to an area that's more personal to me and that is your role, out of all the many contributions you've made to the field, your role in the field of breast-preserving therapy. I came in just as you and Jay Harris were really making that institutionalized.

Just for our listeners, what were the hurdles there? They must have been both personal and professional and technical. And did you ever doubt that this be successful in the long run? You must have had some second thoughts about getting into this.

Well, I have to back up. It was well before Jay, but it was at Yale. And apropos of how many-- going back to our previous question-- how few radiation oncologists there were. There was a club. Before there was a specialty, before there was a society, there was the American Club of Radiation Therapy. And all you had to do to belong to it was do radiation therapy without doing diagnostic radiology.

And I was in the low 200ths of the consecutive order of people who belonged to the specialty from its very inception at the turn of the century. So there were very few of us, and we knew each other extremely well and had these little conversing meetings.

And a number of people would talk about patients who had medical diseases which wouldn't allow them to have their breasts removed. They still had localized, apparently localized breast cancer, and the radiation therapist took care of them, and I did, too. I had these people.

And we also had the Europeans, especially the French, who were treating breast cancer with radiation. In fact, they were doing it with a fundamental difference with what we did from the beginning and they do now. And that is, they did it without removing the breast cancer, because they were doing it primarily for cosmetic reasons. And they felt that taking out the breast cancer might damage the cosmetic effect.

So we weren't alone. We weren't first. So I knew that other people had done it. Some people who did, Simon Kramer in Pennsylvania at Jefferson, Thomas Jefferson, did a great deal of it. And we did it, because we had a surgeon at Yale who was interested in sending patients.

You mentioned Jay, but really, before Jay, there was Lenny Prosnitz, who you may or may not know of, who was a long-time chairman at Duke. But Len was a medical oncologist at Yale, who was about, I don't know, three or four years behind me in training, and I was either a young assistant professor there at the time or a fellow, I can't remember which.

And he came over to me and said, you've got a nice life. You do interesting things. I'm not so crazy with this. Can I get into it? And Lenny, obviously, being trained in medical oncology, being a boarded internist was also interested in breast cancer. Because that's the one disease, even in the beginning that medicine, or one of the few diseases that medicine was interested in for the hormonal aspects of the disease.

So Lenny took over when I left with the surgeon Ira Goldenberg, and he kept it up. And when I went to Harvard, I had all those different hospitals, and I had a very good colleague there, who was the only radiation oncologist in those hospital complex, and he also treated some. So we continued to do it.

One of the nice things about Harvard at that time was, at least for this purpose, was we had this women's hospital, Boston Hospital for Women. And gynecologists in those days did everything for women and that included breast surgery. And those guys delivered their babies and when they got breast cancer, took care of them.

They weren't interventional. They were their private primary care docs, and they were much more sensitive to the cosmetic aspects and the self-image aspects of breast cancer surgery. And so they knew we did it, and they became a big source of suggesting patients and sending them to us.

Anyway, Marty, Marty Levine, the fellow I was talking about, and I developed a reasonable number of them. One of my residents, Eric Weber said, why don't you write a paper about this? I said, it's all done. The French have it. The Brits have it. Even the Canadians have it. He said, we don't. So I said all right.

We sent out the paper, and the first paper is with Eric and Marty and me, and it was a JAMA paper and that gets to another point.

What year was that?

I had to bully pulpit.

What year was that, the JAMA paper?

The JAMA paper? About '75-- '74, '75. And it made a big splash. And then Lenny and Simon Kramer and Luther Brady, two Philadelphia people who had big experience, and us put all of our stuff together. And Lenny brought it all together, and so there was another big paper. I think that one was in JCO, but maybe not. I can't remember.

And I think that's how it got started. And my issue with it and my involvement in it is, yes, pioneering the treatment in America. I don't claim to have pioneered it anywhere else. It wouldn't be true.

But what I did do is use the bully pulpit of being the Harvard professor, and I went everywhere and talked about it. And I took on the surgeons in a number of places and talked about it. And if I made a contribution to it, it was that.

I can remember being in an audience and hearing you talk about the Halstead theory and then the Fisher theory and what became known, in my opinion, as the Hellman theory, which is a combination of the two. That both local and systemic therapies make a difference, and the mortality rate of breast cancer has dropped by almost one-half over the last 30 years, and you should be proud of that.

Oh, I'm proud of it. I'm proud of it. But people don't do things in a vacuum. You build on people and on their doings.

Well, I want to be respectful of your time, if I can finish up here. I really just touched the surface of many of the contributions you've made. I wanted to talk a little bit about your role in getting radiation oncologists to think about what we now call translational science. But at the end here, what do you think are your greatest accomplishments? What do you think your legacy has been to the field? Do you think it's the science or your administration or your teaching and mentoring or all of those together? I think all of us would like to think about what our legacies would be.

Oh, I would say, it's an interesting and not an easy question, because I'm interested in all of those things. But I like to remind people that, and it's been commented on by others, I am one of the few people who maintained a practice of medicine, a real practice, all through being a dean. I always think of myself first as a doctor. And I am an investigator, and I am interested in research, both basic and clinical, and did both of them, but I'm a doctor first, that's number one.

Second to that, I was very involved in teaching and believe-- and that's why I became a dean and before that, started a department in Harvard and gave courses in oncology, and my residents are my greatest legacy, if you really want to know.

Nobody lives forever, and what you did in the lab and your patients, that passes, but your residents are your history. They continue it, and their residents continue it and so forth.

And just to end on a high note that you mention, is that the Karnofsky lecturer this year was one of my residents.

Yes, he was.

Of course, that's Ralph Weichselbaum.

He was. I actually chaired the selection committee, and I can't tell you how proud I was to stand up and introduce him. He did a wonderful job.

In addition to your own residents, I'm going to tell you, you're also passing this on to the medical oncology fellows who were hanging around the Farber in those days. And to this day, I tell patients I wear two hats. My first hat is to take care of them as I can with the knowledge I have today, and my second hat is to do research to make it better. But my first hat always wins, because Dr. Hellman said you're a doctor first. So there you go.

Well, I haven't changed on it. That's very nice to hear though.

OK. I think on that note, we'll end up. I had planned over about half an hour. We're just over that. So thank you very much, both from me, personally, and from those of us in the field and from our patients who have benefited. Dr. Hellman, you are truly a pioneer and a giant in our field. So thank you so much.

Well, you're very kind to say so.

For more original research, editorials, and review articles, please visit us online at jco.org. This production is copyrighted to the American Society of Clinical Oncology. Thank you for listening.

"Cancer and Armed Conflict: Crossing Realities," by Tamamyan, et al: the story of a young patient with cancer from Nagorno-Karabakh Republic and his thoughts and sufferings during the war in 2020.

TRANSCRIPT

Narrator: Cancer and Armed Conflict: Crossing Realities, by Alisa Kamalyan, MSc, Yeva Margaryan, MD, MPH, Jemma Arakelyan, MD, Liana Safaryan, MD, Gevorg Tamamyan, MD, MSc, DSc, and Stella Arakelyan, MD, MPH, MscIH, PhD (10.1200/JCO.22.00663)

In 2007, Armen, a 6-year-old boy from a village in the mountainous Nagorno-Karabakh Republic (NKR), was diagnosed with Hodgkin lymphoma. NKR is a de facto independent state located in the South Caucasus which has historically been inhabited by Armenians and declared its independence after the collapse of Soviet Union in 1991. Armen’s hometown had a small clinic offering only routine health care services. To receive treatment for lymphoma, he and his family had to travel 350 kms to the Hematology Center in Yerevan, the capital of Armenia. The journey was long and exhausting, but every visit to the Hematology Center filled him with hope, and, ultimately, he achieved a complete remission.

Thirteen years later, Armen, now a young man, returned to the Hematology Center for evaluation of rapid weight loss, persistent pain, and chronic fatigue and was diagnosed with osteosarcoma. First-line chemotherapy and surgery were ineffective, as was second-line therapy with high-dose methotrexate, doxorubicin, and cisplatin. The tumor was growing and spreading rapidly, causing unbearable pain.

Throughout the course of his disease, Armen kept a diary. Recently, his family shared his journal with us, hoping to give a voice to Armen and other young patients with cancer struggling with physical and emotional distress along with overwhelming existential angst.

“In the hospital I had dreams which I could not understand. In one of the dreams, it was midnight, and I knew that I was going to die in 3 hours, but time was running backward, which meant that I was going to die at 8 pm … In another dream, I was undergoing a course of chemotherapy when my phone rang, the call was from Hell. I picked up the phone, and it was one of my relatives from Nagorno-Karabakh who is no longer alive.

But you are dead …, I said to her, surprised.

How are you, my dear? She replied.

Once I hung up the phone, a man dressed in black sat down next to me, made the sign of the cross, and then disappeared …”

At the time, there were no clinical trials available for patients with osteosarcoma in Armenia and his family could not afford to take Armen abroad to receive any experimental therapy, so, after exhausting all available treatment options, Armen returned home to live out his days in the village that helped raise him. We knew that his home environment would provide the support he needed as his cancer journey came to its tragic end. We hoped for his comfort, safety, and peace among those who loved him.

On the morning of September 27, 2020, Armen awoke in a panic, distressed by the loud explosions of bombs dropped on his village as the war between the NKR and Azerbaijan erupted. This conflict, coinciding with the rapid spread of COVID-19 in NKR and Armenia, interrupted access to cancer care and essential palliative medications. Armen was bedridden with intolerable pain and a dwindling supply of analgesics. The encroaching sounds of high-intensity blasts further amplified his anguish and suffering.

Armen’s psychological trauma resulted in nightmares and chronic anxiety as evidenced by his diary entries.

“My house keeps shaking with each explosion, resonating like a high-scale earthquake. Soon, the blasts will shatter all the windows in my house” (October 1, 2020). “Our electricity, heating, and water supplies are cut off. My supply of painkillers is running out” (October 9, 2020). “Don’t think about death– think about the future…”

Within weeks, the Nagorno-Karabakh conflict escalated, destroying homes, healthcare clinics, hospitals, and schools, resulting in massive population displacement and hundreds of civilians, including health care providers, being killed or wounded. Given these dire circumstances and Armen’s worsening pain and weakness, Armen’s family sought refuge in Armenia, where his battle with cancer ultimately ended.

After the war ended on November 9, 2020, Armen’s family took him back home to be laid to eternal rest. This had been his last wish. Armen was a fearless soul. He was a fighter who had already survived cancer once and continued his fight with a smile on his face, giving hope to many of our other patients and staff. But the day the Azeris attacked his home, the smile left his face forever.

For our health care team and other colleagues, the 44 days of the Nagorno-Karabakh war caused a psychosocial and emotional crisis. We could not concentrate on our work. Hundreds of soldiers were being killed daily, and many colleagues felt compelled to leave the cancer wards to join frontline military health care workers. With increasing numbers of surgeons, anesthesiologists, and nurses traveling to the NKR or bordering regions of Armenia, we experienced acute staff shortages, undermining the provision of quality care to our patients. COVID-19, the main health care concern for the rest of the world, was no longer our priority, even as the incidence increased 8-fold during the war.1 The vicious cycle of war and pandemic was tormented as we tried to balance our own emotions and fears while continuing to care for and support our patients with cancer.

Armen’s story provides only a glimpse of what people with terminal cancer and the health care workforce experience in resource-limited settings affected by war. Today, around half of the world’s population lives in countries affected by war, with predictions that cancer will disproportionately affect these regions in the coming decades. Because of multifactorial resource limitations, patients with cancer from these areas are usually diagnosed in advanced stages of the disease when palliation is the only viable option for care.

Worldwide, an estimated 78% of adults and 98% of children in need of palliative care reside in resource-limited regions. A third of adults needing palliative care services are patients with cancer and 80% of them live with moderate or severe chronic pain. Despite these data, only 10% of the world’s overall morphine consumption occurs in resource limited regions. The provision of palliative care services is

even more strained by armed conflict. Recently, the World Health Organization reported that palliative care was available in less than two thirds of Syrian health care facilities and that all cancer centers surveyed in Syria lacked immediate-release oral morphine and trained palliative cancer care staff.

Currently, we are witnessing an escalating war in Ukraine. The images from this and any new conflict around the world bring back our own wartime experiences with haunting clarity. The desperation we felt trying to care for the most vulnerable patients during lethal and chaotic times will never leave us. How many children are now writing tales of death in their journals? How many villages and families are being shattered, unable to provide last days of peace and comfort to their sick and dying loved ones?

Despite recent initiatives to include oncologic and palliative care contingencies in humanitarian responses to crisis, they continue to remain a relatively low priority and have been minimally integrated into emergency response plans during armed conflicts. Protocols detailing how to provide basic care to patients with cancer and maintain supplies of essential medications are yet to be fully developed. We urge the international community to take action to address the existing obstacles to cancer care delivery in conflict affected regions to mitigate the adverse impact of cancer and armed conflict on our most vulnerable patients.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insights into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, associate editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Gevorg Tamamyan, Chairman and Professor of the Department of Pediatric Oncology and Hematology at Yerevan State Medical University, head of the Pediatric Cancer and Blood Disorders Centers of Armenia, and Chairman of the Board of the Institute of Cancer and Crisis. We will be discussing his Art of Oncology article, ‘Cancer and Armed Conflict Crossing Realities.’ Our guest has travel, accommodation, and expenses from Roche.

Gevorg, welcome to our podcast.

Dr. Gevorg Tamamyan: Thank you! Thank you very much, Dr. Schapira, for the invitation and for this opportunity to speak with you.

Dr. Lidia Schapira: It is our pleasure. Can you tell our listeners a little bit about the origin of this narrative? How your team come together to tell the story now?

Dr. Gevorg Tamamyan: So, living in a region where every day you face not only - and being an oncologist in the meantime - facing death not only from cancer but also from the war, it makes you think about cancer from a different perspective.

During my not-so-long life, I experienced three wars. The second one was a little bit shorter, but the first one was quite a long one. I was a young boy at the school age and the second one, the large one, was recently in 2020.

Later on, being already an oncologist, when every day you are walking in between life and death and your everyday work is dedicated to saving one more life, sometimes you realize that with one bomb people can kill hundreds and thousands.

So, having this on my mind, I started exploring the field a few years ago, even not knowing that a new war is going to begin in 2020. And we wrote an editorial in Nature Cancer Reviews, I think it was 2019, if I'm not mistaken, about how the war affects cancer patients and cancer care in general. And then in 2020, when we had this sad experience, then we thought that we must express our feelings and reveal what happened, what happens with cancer patients during the war situation. And just recently, of course, there is a new war in the world and we see all this struggling every day. So, unfortunately, this topic does not lose its actuality, I would say.

Dr. Lidia Schapira: You chose to tell the story of a young boy who first came to your major academic center in Armenia at age 6, and you treated and cured him of Hodgkin's lymphoma. And then he returns as a young adult, 19 years old, with an osteosarcoma that you treated. But unfortunately, treatment was not curative, and he goes back to his village and needs to receive palliative care but is suffering now in 2020 with the war in NKR. Can you tell our readers a little bit about the Nagorno-Karabakh war and how it affected your team and the care you provided to children and young adults with cancer?

Dr. Gevorg Tamamyan: So, Nagorno-Karabakh Republic is located in South Caucasus. It's historically inhabited with Armenians and it has been a land for wars for many years.

The first war, what I observed, started in the late 1980s. I was just born a few years ago and I cannot clearly say what happened, but I know from the history definitely. There were massacres of Armenians and the war erupted. But for many years, for three decades, the situation was unstable.

And during the COVID 19 pandemic, Nagorno-Karabakh Republic was attacked by Azerbaijan, supported by Turkey. And just to kind of illustrate what the situation is, there are like 100- 150,000 people residing there. So, this is a small country. It was attacked and there were thousands of people killed and tens of thousands displaced. So, this was the sad reality, what we have seen, of course.

One day I was in Stepanakert, the capital of the Nagorno-Karabakh Republic when bombs were falling on the civilian buildings. I was on the ground floor of the hospital, and I was seeing how these wounded people, civilians, were coming to the hospital. It was really, I mean, my English is very poor to describe all this situation, but back in the hospital, we had a lot of patients from Nagorno-Karabakh and we were seeing their struggles. It was not only from cancer. Some people were losing part of their families, and some of their family members were at the worst stage. And kids, I mean, there was no smile on the kids' faces. It's difficult to describe.

I think it happens with every war, anywhere in the world. And we decided to describe this young boy's story and through this story, to deliver the message about the war, about cancer, and about how patients with cancer struggle during this crisis and these difficult times.

Dr. Lidia Schapira: You tell in your story very movingly how difficult it was for this young man to run out of his pain medication, to also run out of all of the sources of delivery of palliative care. And also, you tell us a little bit about how this made your team feel, that you were struggling with the war, you were struggling with this idea that you couldn't relieve the symptoms and pain of your patients.

Tell us a little bit about how your team struggled through this and what helped you as you went about your work every day?

Dr. Gevorg Tamamyan: Our hospital is a major hospital not only for pediatric cancer. We have the only pediatric cancer center located in the hospital, but also our center, the hematology center, where our pediatric cancer center is located, is the major and the main blood bank.

So, we were kind of primarily involved in saving patients' lives through the blood bank, of course, because all the people were coming to donate the blood and we were sending this blood to different hospitals. And I must confess that this pain medication and palliative care is an issue not only during the war but also during peacetime in many resource-limited settings. But during the war it becomes dramatic. And for the people living in the war area, in the region affected by conflicts, it's almost impossible for them to receive this treatment.

I've seen the stories from Syria, back, let's say ten years ago, photos from the hospitals, and photos of kids who were not able to receive the treatment. Let's say a kid with lymphoma with all the chances to get cured and he or she is not receiving the medications because there is a war, because people fight, and people are dying and kids are dying in pain because they are not able to receive their opioids, their painkillers. So, for doctors, of course, realizing this is very difficult.

And the second one, because the supply chains are kind of disrupted, it's difficult to get the medications on time. Then many doctors leave the hospitals and go to the war front and let's say, do surgeries there or just help the wounded people. Sometimes we're out of the staff or out of the specialists, some of our surgeons. We are a small country and there might be four narrow specialists, one or two specialists, and when your specialists are at the military hospitals, how can they operate? How can they do surgeries for the kids? And of course, everyone has a relative, everyone has a friend who is there and you are thinking about them even if you are not there.

So, from all sides, you are depressed. And that's the war. That's how the war looks. In the cities which are under the bombs, of course, the situation is even more difficult than what we see in different parts of the world.

Dr. Lidia Schapira: The reality of the war is always awful and I really admire your ability to bring this to our attention in such a clear way. Let me ask the question again. How do you and your colleagues get through the day? And I imagine that you're probably sort of reliving the trauma in a way when there is a new war in the world, as there is now in your general area of the world. How are you all doing?

Dr. Gevorg Tamamyan: With every new war, including this new war in Ukraine, I mean, people are dying. You see these images from the cities. The worst thing is that you know these people are from both sides and you have friends from both sides, and even these fighting sides, I mean, they were brothers a day ago. And you see how kids are dying, you see how young people are dying, and you see displaced people who are leaving their houses. It's really very difficult.

In the meantime, the situation here is also not calm. During the last months, several times we observed a similar situation in Karabakh, again, wherein several villages people were displaced. It's kind of a no war, no peace situation. And can you live with the thought that the war is going to begin again soon and you don't know what's going to happen? That's the reality.

Dr. Lidia Schapira: So, you bring our attention, Gevorg, to the enormous disruption in care for children and adults with cancer caused by war, both the interruption of cancer-directed care, but also the interruption of palliative care. There's a general feeling, I think, among many oncologists throughout the world of wanting to help. How can people help?

Dr. Gevorg Tamamyan: It's very difficult, to be frank, to single out a solution, but there are different ways. First of all, I think one kind of help would be just to write an email and say, ‘How are you doing?’

Because in the world, what we are lacking the most, it's paying a little bit more attention to our friends and neighbors and people we know. And of course, with our routine daily life, we are so busy, but even a small message can help the people with the stress. At that time, maybe someone will say, “Okay, do you have ten ampoules of this or fractions of this drug?” Or something like that. “Or would you give me advice on how I might manage this child?”

But of course, my suggestion would be that all the professional societies and humanitarian organizations, and major cancer institutions put their efforts into trying to find systematic solutions for how it is possible to help patients or professionals in the conflict-affected regions, and how to help displaced populations. And not only when the conflict erupts or war erupts because there are conflicts all over the world right now.

For example, people in Syria, right? They experience so many struggles. I was reading in the ASCO post, there was an editorial, that tens of thousands of professionals left Syria. So, people are left without basic health care, and similarly in Iraq, Afghanistan, Ukraine, and in many parts of the world.

So, I think a systematic effort is needed to help the patients and professionals. I'm sure when we get together, we'll find better solutions. But of course, the best way is to keep the peace. But sometimes it's out of our reach.

Dr. Lidia Schapira: That's right. So, some things are out of our reach. But one of the things that we can all do is, as you so beautifully articulated, to show some solidarity and to start by reaching out to a colleague we know or to somebody who is in that area just by checking in, ‘How are you doing?’, ‘Is there something I can do to help?’

And then, of course, through the power of these stories, I think to sort of help people understand that there are ways of getting involved, as you say, to think about creating perhaps a better infrastructure to deal with both cancer care and pain and symptom management for all the people affected by and displaced by war.

Dr. Gevorg Tamamyan: Yeah, I agree, definitely.

Dr. Lidia Schapira: Do you have a final message perhaps for our listeners, Gevorg? Let me give you the last word.

Dr. Gevorg Tamamyan: We are talking about war and we are talking about cancer. My only wish is for there to be peace in the world and there is a cancer-free world, of course.

Dr. Lidia Schapira: Thank you so much for taking the time out of your busy schedule to share your thoughts. Thank you so much to you and your team for sending this beautiful essay to us.

Until next time, thank you to our listeners for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review on Apple Podcasts or wherever you listen. Be sure to subscribe so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO’s many podcasts. You can find all of the shows at podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Confidence by Ash B. Alpert and Bahar Moftakhar. Read by Maggie Sheridan. Two fellows explore the feedback they received during training to develop confidence, or to appear confident.

TRANSCRIPT

SPEAKER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

LIDIA SCHAPIRA: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

SPEAKER 2: It was my first day as the hematology-oncology fellow on the inpatient leukemia service. I introduced myself to the team of residents and nurse practitioners who had spent the last month circling the sixth floor of the cancer center. The residents were nearing the end of their month-long rotation, and their faces reflected the sheer number of hours they had spent rounding, writing notes, and caring for their patients. They exchanged silly stories about their patients in hushed tones as if they were talking about peculiar relatives.

The senior resident filled me in on their daily routine. "Now's your chance to grab coffee," she whispered to me like it was a secret. "We kind of just wait here until the attending is ready to round."

As if cued, the attending appeared. The team created a semicircle around him. It was unspoken, but he was our leader. I awkwardly tried to figure out where to stand. I was told I was there to learn, but I was also supposed to lead. We spent the morning walking around the unit, and the residents and nurse practitioners took turns presenting their patients. The resident recited his presentation, detailing overnight events, sharing social history, and listing each abnormal lab. "Calcium was 10.3. Glucose was 123."

I felt myself start to cringe, realizing how long rounds were going to take, but I remembered being in his shoes just years before and began to encouragingly nod along. He methodically reviewed each organ system, allotting the same attention to the normal blood sugar as the rising lactate dehydrogenase.

I became aware that the team was looking at me as they presented. I nodded along as they spoke, jotting down notes to ask at the end of their presentation.

The next presentation had only just begun when the attending cleared his throat to chime in. "Did the patient get platelets overnight? Did you notice the elevated uric acid? What day of the cycle are they on?" he said in one breath.

I am sure they were getting to that, I thought to myself. The attending took over as I withdrew, and I noticed the team shift to him. It seemed as though the attending was thinking, "Let me just do this myself."

The morning bled into the afternoon, and eventually, the carousel came to a halt. The team scattered to complete their task for the day, and it was just the attending and me left standing. He smiled at me. "Should we go to the ED and see the new patient?"

The long walk to the emergency department was spent making small talk. He asked me about my family. I asked him about his. He asked about my interests. I asked him about why he became a cancer doctor. I began to feel at ease, although I could not stop thinking about how I felt so small compared with him just moments before. But now, I was an equal.

We claimed a computer in the ED workspace and spoke in raised voices above the chaos and chatter. I told him everything I had read about the new patient-- a young woman who had come in overnight for progressively worsening fatigue, weakness, and dyspnea on exertion the last several weeks. She was found to have significant pancytopenia.

Her case that intrigued me. The patient was my age, and for that reason alone, I already felt bonded to her. The attending scrolled swiftly through her labs, my eyes darting up and down the screen trying to keep up. She was hemolyzing. But why? My eye caught her negative DAT. "We should screen her for PNH," I said, pointing at the screen. I remembered seeing a similar case months ago. The scrolling stopped. "That is a great idea," my attending said. I began to relax.

As we were wrapping up, I asked how I could be the most helpful during our week together. "You remind me of myself," he said to me. "I think you should be more confident. I know you have good ideas, but I want you to speak up."

Confidence-- I nodded. I knew what he was trying to say. I was not loud. I was not the biggest personality in the room. I was not foreboding or scary.

I met my co-fellow that evening for dinner. We debriefed the week over small plates of Ethiopian food. We talked about the word "confidence," and they told me their own story as follows.

When I was called about a young patient with lymphadenopathy and splenomegaly, I was between one floor and another, trying to get back to my team on the ED. I had worked through lunch while we had spent the last few hours in the belly of the hospital, seeing patients while I continued to get phone calls about others. I figured I would take this patient. It was my turn to see a new consult, and anyway, evaluating patients for lymphoma was something I did frequently in the clinic.

The resident who called told me that the patient was admitted with aphasia and left-hand weakness. She had a hemoglobin level of 4 grams per deciliter and a creatinine level of 6 milligrams per deciliter. Head computed tomography had demonstrated a right frontal lesion that did not properly explain the clinical presentation. By the time I was called, the neurologic symptoms had resolved.

When I went to see the patient, she was curled up and holding the side of her face. She was thin and pale, beautiful, and clearly uncomfortable. Her sister told me the story, which included back pain, fevers, weight loss, and fatigue. The patient had started taking massive amounts of ibuprofen and stopped leaving the house. When I asked the patient what was bothering her the most, she told me it was the headache, and she seemed to have trouble keeping her eyes open, so I offered to turn off the light.

After I left, I found my attending and one of the residents in a corner of the ED. The attending was sitting at a computer, reviewing the patient's chart. "Simple," he said, describing the case. He held a pencil. I started to tell my attending what had happened in June, and he interrupted. "What did she come in for? What were her labs?"

I was having trouble stringing my thoughts and the story together. I felt dizzy with hunger, sleep deprivation, the attention of the resident, and my attending's rapid-fire questions. "I need a history," the attending said. "Exam? Assessment? Plan? What's the differential for her anemia?" I did not speak. "Reactive or malignant? What tests do you need?"

The resident suggested an SPEP. "Do you agree?" the attending asked me. I shook my head. "No." It didn't fit with her headaches, the neurologic findings. "Back pain, renal failure, constitutional symptoms-- you have to think about myeloma," the attending said, putting down his pencil. I felt hot shame.

The next morning, the resident on the primary service paged me to tell me that the patient was going into the intensive care unit. She'd had a seizure. One of the residents pulled up her imaging, and we saw a bleed that had bloomed in her brain. I woke up in the middle of the night thinking about her, imagining the blood in my own brain, a feeling like wetness. She was two years my junior, 42 years old.

The next day, when I opened the patient's chart, I found she had died overnight. There was not a death note, just vital signs that trailed off. That day, my attending gave me feedback. "You're good," he said. "You just need to have more confidence. You learn the most from putting your ideas out. If you're wrong, then you will learn."

I nodded, but I was thinking about the culture of medicine, the way he forged ahead with his differential and missed the diagnosis-- endocarditis with bleeding septic emboli. I was also thinking about the other times I had heard this feedback. In residency, my intensive care unit attending had told me to be more confident and suggested I be more like one of the male residents, who was loud, brash, and arrogant.

I had not wanted to be like that resident, and I did not want to be like my hematology attending. His confidence had translated to rudeness and allowed the diagnosis to elude his grasp. His feedback had left me without steps I could take to avoid the missed diagnoses in the future.

I would have liked to review the case with him, working through it to figure out where we had gone wrong. Perhaps I had also been hoping for an apology for the way he had acted toward me or remorse about the case, which I did not get.

I called my friend Bahar the day my patient died. I expressed my deep sorrow for our patient, for our inability to help her, and my anger at my attending. She listened intently and expressed her empathy and her caring. She carved out room for my grief, my real self, and an alternative to business as usual in medicine.

Oxford dictionaries define confidence as "the feeling or belief that one can rely on someone or something, firm trust, as in, 'We had every confidence in X,' the state of feeling certain about the truth of something, or a feeling of self-assurance arising from one's appreciation of one's own abilities or qualities."

However, feedback to be more confident from male physicians to those of us who are not men conveys more than what is explicitly included in this dictionary definition. In the commentary that follows, we share our concerns with this feedback to female, transgender, and/or nonbinary trainees and provide our own suggestions about transformative feedback that makes room for all of us in medicine.

In 2013, Sheryl Sandberg wrote a book called Lean In, which was marketed as a feminist manifesto and provided women with tips to succeed in a male-dominated business world. More recently, the book has weathered considerable criticism for advising women that they will succeed if they simply get out of their own way and work hard. The critiques suggest the Lean In strategy "hands a rubber ducky to someone hit by a tsunami and then inadvertently encourages us to internalize our own discrimination, leading us to blame ourselves."

Providing women, transgender, and nonbinary medical trainees the advice to be more confident has similar drawbacks. This feedback suggests that we would be more successful if we simply stop doubting ourselves. This message makes invisible the structural inequalities in medical training-- the barriers we as marginalized people face in accessing training and the micro- and macroaggressions we face along the way.

For those of us who have been marginalized, those of us who are people of color, people with varying abilities, transgender, women, and/or queer, being asked to be confident is like asking us to step into a store where we have been accused of stealing and act like we own it. This advice puts the responsibility on those who have been harmed to engender respect. Telling us to be confident also suggests assimilation into a hierarchical culture instead of changing that culture to be more just.

Espousing confidence as a vital quality among physicians and trainees has additional drawbacks. Confidence supports the enterprise of medicine and promotes the status quo. If physicians act self-assured, perhaps our actions, individually and collectively, will not be questioned. Confidence provides us with a means to avoid considering the ever-present possibility of error that we will cause harm.

In this way, espousing confidence may make us overlook varying viewpoints and perspectives and block potentially transformative changes that could make medicine a more healing practice. In fact, confidence may reinforce hierarchy. If those of us who can access self-assurance espouse it without thinking, we may reinforce power imbalances between colleagues or patients and physicians.

Confidence relies, in part, on pattern recognition-- for the problems people are presenting with to fit into simple, definable entities. Our patients who have concerns or symptoms that do not fit into a usual pattern may be dismissed or shuttled into a category that does not quite fit. These missed or incorrect diagnoses may lead to considerable harm.

Additionally, confidence may not leave enough room for uncertainty, and much that is beautiful in medicine is uncertain and/or could not be immediately known to us-- how a specific patient will feel at a particular time, how a particular patient will do with a given treatment, and when a particular patient will die. If we as physicians do not leave room for our own uncertainty, how will we be able to be present with patients' uncertainty about the next best treatment decision or about their futures?

Feedback is at the heart of apprenticeship and provides a formal mechanism by which trainees can reflect on their own progress and have tools with which to grow. Feedback should be nonjudgmental and kind. Moreover, feedback should be specific to the trainee and about their observable behaviors. Feedback could offer trainees suggestions on improving clinical problem-solving, empathetic and patient-centered care, and/or working with a team.

Ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical care-- ugh. Ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical-- hierarchical-- ideally, feedback would be bidirectional, thus also providing input to established physicians and creating non-hierarchical care teams that support all members.

Trainees, who often reflect more diverse identities than their attendings, could offer feedback on providing patient-centered and non-paternalistic care and cultural humility. In this way, feedback could be a mechanism not just for the growth of individual physicians but for the transformation of medical systems. This may be the only path forward to creating medical training and medical care that is truly inclusive and supportive of all of us.

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LIDIA SCHAPIRA: Welcome to The Art of Oncology podcast. With me today are Dr. Bahar Moftakhar and Dr. Ash Alpert. Welcome to both of you.

ASH ALPERT: Thank you. It's good to be here.

LIDIA SCHAPIRA: It is unusual for us to have an essay submitted by two authors. So I would love for you to tell the listeners a little bit about what led to this writing collaboration and what the experience was like for you.

ASH ALPERT: Bahar and I were just actually talking about that then-- I don't know, maybe one or two years since we first had the conversation that led to this paper. And we just decided to go out to dinner, and she told me this story that she related in the first part of the essay.

I think that sometimes you don't see something clearly until somebody you love has an experience you can relate to. But it was so clear to me, listening to the story she told me, that the feedback that she was getting to be more confident in a clinical setting sounded like misogyny and sexism more than anything else to me.

And strangely, maybe a few weeks to a month later, I had a really distressing experience with a patient, and when I tried to debrief with my attending, he gave me the same feedback. And so at that point, we started talking about collaboratively writing about what does it mean to be told to be more confident and trying to unpack our experiences in medicine through that one.

BAHAR MOFTAKHAR: Yeah, I agree with Ash. I think, as the readers will see, this piece revolves around a similar experience we had in which we were told by a superior that we need to be more confident. And I remember after my experience, when I was reflecting on that day, I was aware of how mundane that day seemed, and in fact, the feedback of being-- be more confident seems like such a benign comment. But I couldn't really understand why that feedback packed such a punch to me.

And when I spoke to Ash about it, and later, when they shared a similar story that they had experienced, it really made us want to unpack that feedback and understand why the word "confidence" resonated with us so much.

It was-- I very much enjoyed collaborating with Ash on this piece. I don't have any formal creative writing training, and my writing has always been deeply personal and for myself. So I looked a lot to Ash for their guidance and their input through this process.

So first, it was nice to be able to share this vulnerable moment with someone and then also going through the challenge of making sure both of our viewpoints were heard and then working on the revisions, and that whole process was extremely rewarding, and I very much enjoyed working with Ash.

LIDIA SCHAPIRA: So let's talk a little bit about the conversation and the writing and how it helped you to process what sounds like an important formative experience, where it could be that you could have done this over some feelings you had about a patient. But in this particular case, what both of you are really talking about is the experience of being a trainee in a highly pressured setting, right? So talk a little bit about the writing itself and the process of getting from these experiences and thoughts to an actual essay that you can now share with other readers.

ASH ALPERT: Actually, I think that a very important moment for me in the process of writing and editing this paper was meeting with you, Lidia, and hearing you say something about having had a similar experience. And during that conversation, I remembered that when I was an attending before I went to fellowship and I often used my first name with patients, that one of the advanced practice providers that I worked with told me that I should stop doing that because men are always-- are often referred to by Dr. So-and-so, and women, which I identified with at that time, are referred to by their first name.

And I remember thinking and telling that person that I do not have interest in being more similar to men attendings than I already am. And I think that came up in the conversation that the three of us had about this [INAUDIBLE] and really helped me to identify and unpack what it-- one of the aspects of what was going on, which was that in my way of being in medicine and in my way of thinking about medicine, perhaps I was [INAUDIBLE] some of the ways that hierarchy was manifesting itself. And when I got the feedback to be more confident, I felt that I was being told to try harder at a system that wasn't working for me.

And I think that for those of us who don't find that we're heard or seen in medicine or other spaces in our lives, we feel that the answer is to try harder, to speak louder, really makes invisible those experiences and also creates an impossible path.

BAHAR MOFTAKHAR: Yeah, I think this piece was important to share because it will resonate with a lot of trainees, especially certain groups of trainees who aren't able to harness confidence readily for whatever reason that may be. And I think it will also resonate with our mentors and teachers who provide feedback to trainees because it highlights the importance of giving quality feedback that's something that's tangible and actionable.

I don't know about Ash, but as we were writing this piece, I think one of the challenges was really dissecting what confidence is. Is this different from being overconfident? Are the pitfalls of confidence one that transitions into arrogance? And I think that we tend to perceive the person who's the loudest in the room or the biggest presence, the first to speak, the person who's interrupting or interjecting as the person who's most confident. And by virtue of how we define confidence, we tend to think that person is always right and has the answers.

And I think that we forget that these qualities come more naturally to certain groups of people, and in medicine, that's historically men and particularly white men. And I don't see confidence as something that you can just switch on or off, which is implied by the feedback of "be more confident." I think that we can change our behaviors to appear more confident for a period of time, but that assumes that those of us who are marginalized are holding ourselves back and really ignores the systemic issues that are in medicine for these marginalized groups of people.

LIDIA SCHAPIRA: So let's talk a little bit about how to make medical training or oncology fellowship safe, a place really of growth and recognizing that the work that we do and that we ask you to do all the time is really very difficult, emotionally charged, and you're working at a very fast clip and under a lot of pressure. So as you imagine yourselves now transitioning to being attendings, tell our listeners a little bit or one or two things that you'd be sure to do to create those kinds of safe learning environments.

BAHAR MOFTAKHAR: I think that there really needs to be just an open dialogue and space for everyone's thoughts and ideas to be heard. I think in the hierarchical medical culture it can be a really dangerous thing. Early in our medical training, we adopt this hierarchical thought process every step of the way. And when you're someone who's marginalized, advancing in this hierarchy is pretty challenging, and it's due to barriers we either put on ourselves or institutional barriers. And then this perpetuates what hierarchy looks like and then muffles the voices of those people who have different experiences or viewpoints.

And so people who are lower on the hierarchy, whether that's a medical student or a resident or fellow, feel uncomfortable speaking up or voicing their suggestions or concerns. And then this lack of diversity of perspectives then has consequences on patient care.

So I don't know what the solution for change is, but like I said, I think it starts with open dialogue, education for everyone at every level, and hopefully, this can create a safe environment. And as Ash and I are coming to the conclusion of our training and, in a sense, moving up this hierarchy, I hope we remember this and continue to create space for everyone.

LIDIA SCHAPIRA: So before we go to Ash, let me ask you a follow-up question. Imagine yourself now a few months down the road. You are the attending coming in to meet your team. How do you greet your team?

BAHAR MOFTAKHAR: I would introduce myself as Bahar, and I think I would remind whoever is on the team that I was there where-- whatever level of trainees I have with me that I was there in their shoes. And I would let each of those trainees introduce themselves and be heard and ask them like you did, Lidia, before we started the interview what-- how they want me to address them and things like that. Though I think it starts with grace and kindness, it's such a simple thing, but I think that's really the foundation of how we can change the medical culture.

LIDIA SCHAPIRA: So a moment of empathic connection, right? And you seem to me to be anti-hierarchical.

BAHAR MOFTAKHAR: Absolutely.

LIDIA SCHAPIRA: I look forward to having another conversation with you in a few years and ask how it's going. So let me ask Ash the same difficult question. You're now leading a team. How did this go for you?

ASH ALPERT: Yeah, so I think taking a step back even, I mean, I wonder how the system could change overall such that the structure of leading a team maybe didn't exist in the same way, because I feel like once I'm already leading the team, I'm in a position where it becomes really hard to connect with the other people on the team in a real, authentic, and safe way because the hierarchy itself isn't particularly safe.

So I wonder if there is a way going forward to re-imagine medical system in a way that could really provide an opportunity to decrease disparities, make them safe for trainees and everyone else, and the patients as well. I think that we probably need to think about the ways that we're using the labor of [INAUDIBLE] as well and how that impacts emotional and physical wellness. And there may be many other steps that we need to take to create spaces that really make room for everybody in a safe way.

LIDIA SCHAPIRA: So Ash, let me follow up with another question for you, and that goes back to the theme of your essay and what brought us together, which is confidence, right? So you talk a lot about the appearance of confidence in the eyes of others and not relating to that. What is confidence for you now? And how do you think about it, or do you even think about it?

ASH ALPERT: Yeah, so I guess what I started to realize as I was writing the paper that maybe the question of confidence is just the wrong question. And that it becomes a surrogate for telling people that they're the problem, as opposed to the system being the problem. So I think confidence can be a surrogate for being able to succeed in capitalism, for example. And so I've stopped thinking about it as a goal that I want to attain, but thinking about it more in terms of what are the implicit messages and how can they be made explicit and then shifted.

LIDIA SCHAPIRA: So a question for each one of you is this, what would be the top values in a system that delivers patient care and trains the new generation of specialists or physicians? What kinds of values would you hold high?

BAHAR MOFTAKHAR: I think that rather than there being an emphasis on confidence and this self-assurance trait, that I would say should be valued is self-awareness. I think someone who knows their limitations, who knows when they don't know the answer, who knows when someone else probably knows the answer better than they do, who knows that they don't have specific interactions with different groups of people and who wants to learn, I think that is a trait that's very valuable in the medical culture. And I think that for someone to allow uncertainty in their practice is such a beautiful thing, and that's something that I think we should appreciate.

LIDIA SCHAPIRA: So I'm hearing, in addition to self-awareness, a little humility and curiosity.

BAHAR MOFTAKHAR: Yes.

LIDIA SCHAPIRA: All right, let's turn it over to Ash.

ASH ALPERT: I think actually that sums it up pretty well. I mean, I was thinking of things like patient-centeredness, cultural humility, humility in general, willingness to ask deep questions. But honestly, I think that those three things would really be the basis of very high quality care.

LIDIA SCHAPIRA: Do you think that the experiences you had that inspired you to think about this are pretty universally shared by other trainees? Can you stay a little more about that?

ASH ALPERT: Interestingly, one of my attendings who knows about the piece told me that he was interested because he hadn't had this experience. So he asked his wife and daughter if they had experiences like this, and they both said yes. And it was a surprise to him, but maybe a good way for him to connect with other people in his life. And I definitely have heard this experience from many, many people who are not men in particular.

BAHAR MOFTAKHAR: Yeah, I agree. I shared this experience with my younger sister who's in medical school right now. And I think she was telling me that even early on in the medical training that she's had experiences like this. And for me, my experience with confidence through my medical training rose early on like her.

And my personal experiences are heavily tied to gender and I think that these moments appear subtle. In medical school on clinical rotations, it would be when a male colleague would speak over me. And in residency, it would be when the patient directs their questions to the male medical student. And I think we see those qualities and behaviors that we classically associate with confidence continually being rewarded. So these tiny moments of microaggression tend to add up and contribute to how you feel about yourself.

So when we hear feedback about being more confident with no further elaboration on how to do that, it tells us that we need to change your behaviors and act in a certain way. And it really discounts the work that we do and the knowledge that we have and patient care that we deliver. So it kind of makes us feel uncomfortable. So I think, like Ash was saying, there are certain groups of people who have had similar experiences like we've described in this piece.

LIDIA SCHAPIRA: I wonder just seen through the sexism lens-- and there are many other ways to look at this, of course, and we barely skim the surface of this in our conversation-- I wonder if you asked all of your female attendings if they've experienced similar moments. And my hunch is everybody will say they have.

And I think that different words have been used through the ages-- assertiveness, aggressiveness, and now we're down to confidence, which seems a little blander. But as you say, it really camouflages a much deeper sexist message, which is more, I think, be like me, be like us, right? I mean at least that's what I have taken away from this. And you're nodding, but our listeners can't see the nods. So I'm going to ask you to just say a few words. I'll let you finish with a message, again, that hopefully will inspire those who are listening to the podcast.

ASH ALPERT: So in some ways, it seems like an invitation to assimilate and leave other people behind. And I wonder if instead we could do the hard work of looking at our medical systems and figuring out how we can get them to really make space for our patients and make space for each other.

LIDIA SCHAPIRA: Bahar, do you want to say a few final words for our listeners?

BAHAR MOFTAKHAR: This piece, like you said, this word confidence seems like such a mild, bland, benign term. But for me, I was so surprised the emotion it evoked in me when I first heard it. And I think there are many layers to this. One is that being told to be more confident insinuates that there-- implies that there are these certain characteristics that we should embody and that's how we can get ahead. And those are certain characteristics that don't come naturally to some people.

And I think that confidence as feedback is very challenging because it's hard for someone to understand what to do with that feedback. Is this a reflection of my medical knowledge? Is this a reflection of my patient care? So I think the other takeaway I would take from our piece is really looking at how to give feedback and receive feedback.

LIDIA SCHAPIRA: Bahar and Ash, I really want to thank you for submitting your piece, for bringing this very important conversation to the attention of the readers of JCO. And I look forward to continuing our conversation perhaps in person, if that ever happens again. And again, thank you very much for submitting your essay and I hope all goes well.

Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology Podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.ASCO.org.

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Dr Hayes interviews Dr Ganz on pioneering quality of life studies.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

TRANSCRIPT:

PRESENTER 1: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

PRESENTER 2: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

DANIEL HAYES: Today, my guest on the podcast is Dr. Patricia A., Patti Ganz. Dr. Ganz has been a pioneer in establishing an entire field in our discipline, the discipline of survivorship. And really, this has been based on studies of quality of life and toxicities of therapy in patients with established active cancers that Dr. Ganz was involved with for really, the last four decades.

Dr. Ganz was born and raised in Los Angeles. She received her undergraduate degree at Radcliffe, graduating in 1969. And correct if I'm wrong, Patti, I understand you were in the last class before the merger with Harvard. But I see you got your degree from Radcliffe and Harvard. So she received her medical degree and completed her residency and incidentally was chief resident and then medical oncology fellowship, all at UCLA. She then joined the faculty at UCLA and spent much of the early part of her career at the UCLA associated VA hospital.

In 1992, she moved back to the mothership where she is now professor of medicine in the David Geffen School of Medicine, a professor of health policy and management in the Fielding School of Public Health, a distinguished professor of medicine and health policy and management, and the associate director for population science research in the Johnson Scott Comprehensive Cancer Center, again, all at UCLA.

Dr. Ganz has authored over 400 peer reviewed papers, way too many chapters and reviews for me to recount here. And since 2017, she served as editor-in-chief of the Journal of the National Cancer Institute, one of the leading journals in oncology. She has an enormous list of honors that, again, is too long for me to go through today, except for a few I'd like to highlight.

She's received two of ASCO's highest honors, the American Cancer Society award in 2008, and the Joseph B. Simone award for excellence in quality and safety in the care of patients with cancer in 2016. She was also the recipient of the Ellen L. Stovall award for the advancement of cancer survivorship care. She was a founding member of the National Coalition of Cancer Survivorship, and she was inducted into the Institute of Medicine, now designated the National Academy of Medicine, in 2007. And she's really played a major role in the efforts of the Academy to improve quality of care in medicine and particularly in oncology. Dr. Ganz, welcome to our program.

PATRICIA GANZ: Thanks, Dan. It's great to be with you.

DANIEL HAYES: So just to start out, there are so many things I'd like to talk to you about. One of those, in my opinion, you've been the epitome of role models for women in academics. And a lot of this series has mostly been men, because it was mostly men who started a lot of what we do way back 40, 50, 60 years ago. I know you grew up in LA. What shaped your decision to go into medicine in the first place, and then to stay in academics?

PATRICIA GANZ: I went through college at Harvard and Radcliffe in a very turbulent time, in the late 1960s. Social issues were very important to us then, political issues just as they are now. And I was a biology major. And I was thinking about what I would be doing in the future. And for me, I really felt that I had to do something connected with people. And that was part of my decision.

But of course, I had a major influence from my father, who was a physician. He actually went to the University of Michigan. And he always encouraged me to think about medicine, although he said ophthalmology, radiology, those are good careers for women. So you know, I had this lurking in the background. I didn't want to necessarily do exactly what my parents said to me. My mother was someone who also had been working in a family business for many years. So I had them behind me saying it was possible to have a career and to move forward in medicine.

And of course, summers, doing various kinds of research that was involved with a potential career in medicine. So it wasn't a big surprise. Now why did I come back to LA? I guess that's a good question. Nowadays, when people actually are applying to medical school, I think they apply to 20, 30, 40. In those days, I think I only applied to six, if you can believe it. And three of them were UCs, and three or four of them I guess where on the east coast, or Northwestern with another one. It was a tough time. It was just on the feminist movement, also social change in terms of more African-Americans being admitted to medical school. And it was a tough time for those who were underrepresented, such as women.

And in fact, at Harvard Medical School, I think family took 10 women. UCSF maybe took seven or eight women, where I'd gotten accepted there. And when I finally went back to school at UCLA, there were only three women in my class. So again, quite a striking difference than the way things are now. But I did come back to LA because UCLA was pass/fail. Having heard about the competition and medical school people being pretty cutthroat, I said, mm, probably good to go to a place where that wasn't the big issue. In addition, I actually met my future husband in a lab, working in a lab before my senior year in college. And I guess that might have been a motivation as well.

DANIEL HAYES: And have you seen major change in attitudes regarding sex/gender in academics now? Do you feel that we've really made advances, or is it all just covering of a system that still exists?

PATRICIA GANZ: I could speak for an hour on that, so I'm not going to do that. But I have to say that being a minority in the class was not unusual. Because at Harvard and Radcliffe, there were 300 women in my class at Radcliffe, and 1,200 men. And obviously, in the science classes I took, the women were in the minorities as well. But for women at that time, getting into medical school, they were actually a lot smarter and a lot better than the men because we were highly selected. However, my class, the three women-- one was me coming from an elite Ivy League school. One was a blonde valley girl who was coming from a California State University and another was a Korean immigrant. So we were all quite diverse-- yeah, even then.

But by the time I graduated, we had a few women who transferred in. And actually, my husband who was a physicist at that time, went to medical school at UCLA five years later, and his class had about 25% women. So things were rapidly changing then.

DANIEL HAYES: So I understand you really started doing hospice care when you were at the VA initially. And how has that colored what you ended up doing in terms of your career? I mean, in the 1980s, there wasn't a lot of hospice care. It must have made you think about and led to what you're doing now, what you've done.

PATRICIA GANZ: That's an excellent question, Dan. And it was actually the late-- 1978, where I joined the faculty. And the chief of medicine said, you know, we have this kind of intermediate care unit. We'd like you to start a hospice for our oncology service, et cetera, et cetera. And there was actually a national hospice randomized trial that was going on at one of the other VAs here in Los Angeles. And having come out of my oncology training and thinking about it, I really thought well, you know, lot of those things that we're offering people at the end of life, like pain control and psychosocial support and things like that, we should really be doing that earlier for people. Because why should it just be reserved for those last few weeks?

And so as I develop my unit at the VA, I actually called it a palliative care unit, a palliative care ward. Because at the VA I worked at, we had patients who actually often were in the hospital for five or six weeks getting their radiation, traveling by bus to the radiation facility. So they would be in for five days a week and then go home on the weekends. And these-- again, this was 1978, what were we seeing? We were seeing lung cancer. We had men with widespread prostate cancer who needed palliative radiation to the bones. We had a lot of colon cancers. So I was taking care of those patients. And while they weren't in imminent need of end-of-life care, they had trajectories which clearly were not good if they had advanced cancer.

And it seemed reasonable-- I had a wonderful team, a physiatris, a psychologist, a social worker, even the pharmacist made rounds with us. It was just wonderful. And I essentially took all of the things that the palliative care end-of-life focus that hospice used and brought it up to the earlier part for some of these patients who, in fact, could be cured.

I can think of someone who had localized small cell carcinoma who I took care of for many, many years. He was in getting chest radiation and whole brain. And you know, he lived a long time but he got all the tender, loving care that our nurses and our team were able to provide early in his course.

DANIEL HAYES: You know, it segues really into my next question, which is in my own training, in the early 1980s at the Dana-Farber, especially led by Dr. Fry, Tom Fry, who's one of the fathers of medical oncology. We were really trained to learn how to treat and hopefully cure cancer. And there was very little regard to the toxicities. Dr. Fry used to tell us, cure the cancer first, we'll figure out the toxicities later. And at least the shackles begin to fall from my eyes as I began to see what you and others started to say. Well, you know, these people are going to survive. We need to worry about that.

And personally, I think you almost-- not quite, but almost single-handedly taken our field beyond just treating the cancer, but worrying about the quality of life of survivorship. When you were starting that, either at the Bay area or when you went back to the main campus, what were the hurdles? Were there people who told you, you were wasting your time? Most have been told this is a fool's errand. You'll never get promoted by doing this kind of research. And you have done OK, I think.

PATRICIA GANZ: Yeah. You know, I actually wanted to even go back to my training, you know? Because in the late '70s, there was actually-- in my heme/onc division, it was mostly liquid hematologists who were the leaders. And there were one or two solid tumor oncologists. And because I was interested in medical oncology primarily, I was the mentee of this person in his clinic. And essentially, what happened-- this was in the early days of adjuvant TMF chemotherapy. And you know, I was giving women chemotherapy for 12 months. And they didn't want to take it. They wanted to stop because of the toxicities of treatment.

And he typically had me see those patients who needed that kind of support and symptom management and things like that, which were rather primitive, obviously, at that time. Because he was very technocrat in terms of knowing the literature and making those kind of decisions about therapy, but not managing all of this. So because of this collaborative relationship in his clinic for a couple of years, that's essentially where I began to see these issues because patients felt comfortable talking to me about it.

Early on actually, at the VA, I was very fortunate, first of all, just to say I was a biology major in college. I never took a psychology class, ever. I took maybe a sociology class, which was on China at the time, but really wasn't trained in behavioral science. And I was very fortunate because there was a psychiatrist who was very interested in understanding the impact of cancer and its treatment on patients. And again, mind you, the five year survival was less than 50% at that time. And certainly, for the patients we saw with lung, colon, prostate that was metastatic, very much shorter.

And he got a grant from the VA to do an intervention trial in the veterans and their spouses. But in order to be able to understand what patients were experiencing, Ian, the psychologist he hired as a project director, said, well, we've really got to interview patients and talk to them and find out what they're dealing with. And the psychological or psychosocial literature at that time was rife with issues related to coping. And coping is a concept that is not easy to explain to people. And certainly, it isn't necessarily universal in terms of many cultures.

So it was difficult, then, to kind of operationalize this. And again, because I work with this great team, they began to interview our patients in clinic, and really, in detail, understood the day-to-day things that people were dealing with in terms of their cancer and the side effects from the treatment and their social relationships. And then we, all of a sudden, began to think of ourselves as a multidisciplinary team. And in fact, the person, Joe Collin, who was the associate director for population science at the Cancer Center at that time at UCLA, kind of said, gee, you make the ideal multidisciplinary team, you know-- a psychiatrist, a psychologist, and some medical oncologists. And it was from that time forward, that we began working together and I got my first grant. And really, they taught me so much about measurement, reliability, and validity.

And in fact, we published our first paper together in JCO the second volume, which was on the Karnofsky performance status we visited, where they compared their ratings of the Karnofsky with my ratings of the Karnofsky for the clinic patients. And because they did a systematic interview about what patients were experiencing, noted that the function of patients was much worse than what I as even a sympathetic clinician would rate them. So that was really so important for me and working with them.

And again, I think that's been the hallmark of my career to have had so many psychologists and psychiatrists, behavioral scientists, who embraced working with me, partly because I gave them access to patients if they wanted to study them, but I was also interested in really understanding, in a very rigorous way, how we could measure some of these things.

DANIEL HAYES: Yeah, that raises another issue. In my career as a clinical investigator and translational investigator, pretty much inherited the tools to do what I want to do, how to do a clinical trial. It's always struck me that you, and I guess, Charles McKinsey and others had to make up your own tools, basically, to get it out of the realm of touchy-feely, if you will, and into the realm of true quantitative science so you could describe what you've done and how you've done it. How did you go about building those tools?

PATRICIA GANZ: So again, a lot of these strategies or approaches to measurement were available in the social science literature. And they were just beginning to be translated into medicine. And again, this goes back to when I was training at UCLA. The Rand Health Insurance Experiment was going on in the '70s. My attendings in clinic were all involved in that. And John Ware, who was a great psychologist/methodologist, developed huge measures to look at patient outcomes in that big insurance experiment trial, which then got adapted into many other instruments that are widely used, such as the SF-36, and more recently, the Promise measures, which are publicly available.

So I kind of was-- again, I had these kind of parallel streams of exposure. Health services research was very prominent at UCLA. These were my clinic attendings. And there was a very robust community of health services and health outcomes researchers. So I saw myself as kind of being an oncologist who could use those methods and apply them to the cancer problem. And there certainly weren't too many people out there.

In addition, I had good fortune to begin to work in the cooperative groups, Ware and SWOG, with someone like Carol Moinpour, who led the efforts there in terms of patient-reported outcomes for many years, and then actually had a sabbatical in Switzerland, working with some of the IBCSG people and really having a time to just self-educate myself about this methodology. So I'm really self-educated, but have had wonderful collaborators who have kind of held my feet to the fire and said, you know, that's not rigorous enough, on occasion, certainly.

DANIEL HAYES: So you were doing team science before the word came up, before the term.

PATRICIA GANZ: Yeah, exactly. Certainly, when you have certain gaps in your knowledge, you need those collaborators.

DANIEL HAYES: You know, this brings up-- I alluded to her just a moment ago. But when I think of cancer survivorship and quality of life, I think of you. But I think a lot of the late Jimmie Holland, who sadly passed away before I was able to interview her for this series. Can you just-- I think maybe some of our listeners don't know of her, haven't heard of her. We've got a lot of people young people listening to this. Can you just give a little background about Dr. Holland and the things she did?

PATRICIA GANZ: Sure. Dr. Holland was a psychiatrist who really invented the field of psycho-oncology. And really, because she was working almost always in a cancer hospital, cancer setting-- I believe first at Roswell Park with her husband, James Holland-- she began to notice the neglect, if you will, of the impact of the cancer on the whole person and on the psychological aspects of cancer. And because of her being within a cancer hospital setting and then later moving to New York and obviously leading this effort at Memorial Sloan Kettering-- and really being very involved with CALGB and now the Alliance-- was able to introduce very early into the cooperative groups, the need for not just looking at the disease and its treatment, but to look at the after effects or show what were going on in the patient and how they were dealing with the illness.

And she actually developed one of the first collaborative groups in psycho-oncology, which had people like Gary Morrow, who's at Rochester and who's had one of the big ENCORE research bases and has really continued to carry on a lot of psycho-oncology research across the country. Following what was really an early innovative approach, she developed a whole training program at Memorial. She trained many outstanding psychologists, psychiatrists working in this field and textbooks. I had the good fortune to work with Julia Rowland for a number of years.

Julia was a direct descendant, if you will, Dr. Holland, having been at Memorial working with her and leading some of their early survivorship work. But she just trained probably more than a generation of people to take this seriously. As I kind of mentioned in an email to you, just as I would go to the ASCO meeting to listen to what Dr. Fisher or Dr. Bonadonna had to say, because I was interested in breast cancer and it was very exciting to hear the new reports of adjuvant therapy, I would also go to hear her and to Barry Castle, who was another leader in the field at the University of Pennsylvania, who basically were bringing rigor and clinical expertise to characterizing the patient experience, and publishing papers often in high profile journals like the New England Journal.

So they were really role models for people who wanted to go into this field, although they weren't oncologists. And I think that's where I had kind of a double opportunity. Number one, I was perceived as a card-carrying oncologist. I was treating patients. I was in a cooperative groups. I was involved in trials, but I was also saying what about this secondary objective to our trial to look at the experience of the patients? So having entree to the patients, being perceived as one of the oncology community was, again, a really good thing to do. Although I must say that there were dozens and dozens of conferences where I was the last speaker on the program because quality of life was down there at the bottom-- not so much anymore.

DANIEL HAYES: Your stories are great. I have one brief anecdote again, for the younger listeners. Jim and Jimmie Holland where as different as night and day. And Jim Holland, who was one of the three guys with Dr. Fry and Dr. Freireich-- who decided to put two drugs together and suddenly, we were able to cure some cancers-- was blustery. You might even call him a blowhard.

I loved him, but I will never forget as a very junior person in CALGB, and I was appointed to be chair of a committee. And I was running my first committee meeting-- and needless to say, I was nervous anyway. And all of a sudden in the back of the room, Jim Holland, without a microphone, screams out something about, Hayes, if this is the way you think it's sounding, when I'm reading to you now, duh, duh-- so I went ahead and got through the reading. And later, Jimmie walked up to me and said, you know, he really loves you. His bark is much worse than his bite.

PATRICIA GANZ: No, and you know, I think the early days of oncology were so much like that. Because again, we would have these wonderful people come to the microphone and ask a question. In the case of Dr. James Holland, he didn't need a microphone. But the point is, that we actually saw these people in real life, posing questions, challenging sometimes what was presented in a meeting, but also being very collaborative. And I think it was wonderful. And I think it's good that we have-- you know, our meetings today, obviously, are quite different because of the pandemic. But in our large meetings, we have scheduled discussions which is good, but it doesn't have the same spontaneity that we obviously were fortunate to experience in an earlier time.

DANIEL HAYES: Yeah, I agree. You know, I think probably, of the many, many contributions and things you're known for, I believe your role in the Institute of Medicine then, now the National Academy of Medicine, regarding survivorship may be your greatest impact on what we do. How do you think that's translating now, to use the word translational science, which it really is? And when I was present, I was struck. There are probably 15 million cancer survivors in the United States right now. Have we really changed how they do based on your report, or is that falling on deaf ears? What do you think's going on with that?

PATRICIA GANZ: Well, you know, there's several things that have happened. So the report that was in 2006 was led-- actually, Ellen Stovall was actually one of the co-leads of that committee. And you know, that was very seminal in that it was-- it's called the lost in transition report. And it really called out-- at that time, there were 10 million survivors, and that this whole large body of the population didn't really know, didn't have much direction about what to do after treatment and were kind of lost, because the oncology care system didn't really give them any guidance. And if somebody went to their primary care doctor, they would say, uh-oh. I don't know what that's about. You go talk to your oncologist.

And then the oncologist would say, oh, that's a weird symptom, but it's not-- you know, you don't have any evidence of disease. That would be the typical thing. But it was usually an ongoing long-term effect of the treatment or possibly a late effect that was emerging, you know, such as a cardiac problem or a neurological problem that might be a secondary to previous treatment. And so the patients really weren't getting good care. And they kind of said we need there to be a group of people-- whether it's an oncologist or someone else-- who will take an interest and really tell us what do we need to be on the lookout for.

And that was kind of a way to say, we need an end-of-treatment discharge summary. And it became actually very apparent. I was on the ASCO board actually during that time with the NICCQ report. I don't know if you remember that, but it was a report that ASCO did looking at the quality of care for breast and colorectal cancer patients. And what they found was you could find the op report from the surgeon. You could find the radiation therapist's summary note. But the chemotherapy flow sheets-- and this is, again, before electronic records-- were the only way you could even find out if somebody a series of treatments. And that went on, sometimes, over several years.

So there was kind of no summary after the medical oncologists finished their treatment. So they try and figure out, even if you were the treating physician many years later and you needed to retreat someone, it was hard to know what was happening. So in some ways, the treatment summary and care plan had two roles. One was to say, well, what did they actually get? And the patient should know what they got in case many years later, you find out there's the late effects. But also, what do we need to look out for? And so really, again, building on what the childhood cancer survivor people had been doing for many, many years in terms of long term and late effects, this became an issue.

Now Ellen Stovall, who was really focused on quality of care for cancer patients, and again, unfortunately, passed away a few years ago from complications of her Hodgkin's disease, really wanted there to be treatment planning and not just the treatment summary and care plan at the end of treatment. So I was actually fortunate in 2013 to lead another-- to lead, at this time, a report on quality of care and quality of care for cancer patients. Because Joe Simone had done one in the late '90s, and this was kind of a catch-up report. But it was also focused on the large and growing number of cancer patients, and many of them older.

And with the baby boomers going into an age where cancer is very common, you know, how was our health care system going to approach this? And so we were, in that report, in many ways, echoing what had come about in the earlier survivor report, but saying you need to do this right from the very beginning. And it is very important for survivors. If we're going to be worried about fertility preservation, we need to do it right upfront. If we're going to be worried about potential complications in terms of cardiac toxicity occurring later, we need to be thinking about it in terms of planning the treatment for patients so that maybe they don't need to get chest radiation if they're a lymphoma patient. But chemotherapy and the very targeted therapies and the sensitive PET scans might help us avoid using unnecessary radiation to those individuals.

So it has to be upfront thinking about what's going to have happen afterwards. And as part of the 2013 IOM report, we basically had many different recommendations which were kind of, I would say-- I kind of want to say pie in the sky, but futuristic. And one of them was that the insurers-- primarily Medicare, but other insurers-- should insist on patients having a treatment plan at the time of diagnosis, that their needs should be met, that they should have an understanding of the financial impact of the treatment decisions they're making, and that this should be part of a quality of care assessment strategy.

And again, the thought was OK, maybe three, four, or five years from now, that will come about. But lo and behold, a year later, CMS picked this up and we had the development of the oncology care model, which in essence, took from our report the 10 or 13 point items that need to be part of initial coordinated care, which also included our survivorship care plan and treatment summary at the end of treatments.

So I think to me, actually, that's one of the most significant accomplishments because now I see there's going to be a second version of the oncology care model, that many practices across the country have adopted these things. And as they've been part of the oncology care model, they're delivering this care to everyone, whether patients are insured by CMS or a private insurer. So I think this is an example of how long it takes to implement anything. Again, part of what I see our role, or my role as a health services researcher, is implementation science. If we know what works and what's important, it may take 15 years before it happens, but you need something like CMS to have a bundled payment plan. Or in the case of the treatment summaries and care plans, we have the American College of Surgeons who have championed that.

And without these external regulatory policymaking organizations and payers, we don't get a lot of change. A long-winded answer, but to me, that's where the rubber hits the road.

DANIEL HAYES: Well, I agree completely. I think that'll be your legacy, among many things. I mean, isn't it also part of the QOPI designation for QOPI accreditation in ASCO, isn't the survivorship plan?

PATRICIA GANZ: Yes, the treatment summaries and care plans. I don't know-- I haven't seen any data. Recently, when I was more involved with the ASCO quality care committee, I saw some of those results. I don't know how compliant or adherent people are. But actually, part of the complaints that people have had has been, oh, it's hard to do this treatment summary. But if you actually start out with your initial treatment plan-- and we're actually doing this now on our Epic system at UCLA. There's something called the oncology history.

And if you actually begin documenting from the beginning of treatment, you can actually move toward a treatment summary that's easily generated from the electronic record. But it's hard when you have to go back and do it retrospective.

DANIEL HAYES: I was going to say, for all the young people who, at the end of a very long day, find themselves also having to do this long-term care plan for their patients, you could blame Patti Ganz for the work she started 30 years ago.

PATRICIA GANZ: Yeah, OK.

DANIEL HAYES: Actually, in the few remaining moments we've got, I want to bring up your new role as editor-in-chief of JNCI, the Journal of National Cancer Institute. I believe that you and Dr. Disis are the first women who have been editors-in-chief for major oncology journals. In fact, I don't believe it, I know it. You've been in the role now about three years. JNCI has always sort of had a niche that the other journals don't cover very well, in my opinion, and that they do. In taking it over, what are you keeping and what's your vision for the way you'll mold it in new ways and take it in new ways?

PATRICIA GANZ: So I've been very fortunate, I was-- you know, I actually had a lot of experience at JCO as an associate editor for many years. And then I was also on the editorial board, and then deputy editor or associate editor and deputy editor of JNCI for quite a while as well. And Carmen Allegra took it over when Barry Kramer stepped down seven, eight years ago. And I knew Carmen from NSABP and RG. We had worked together closely. And I was kind of amazed when he took it over with all the obligations that he had as head of a heme/onc division and other roles, both leading gastrointestinal cancers at the NCI and NSABP Foundation. So he was doing a lot, and I thought, oh my gosh, you know? This is a difficult job to do as well.

He basically moved the Journal a bit more towards a clinical perspective. And again, the history really is that JNCI was one of the first cancer journals. And maybe there was cancer research, but it was one of the first journals. And it essentially covered everything from soup to nuts, a lot of basic science. If you go back and see some of the highest cited papers, many different fundamental assays and so forth were published in JNCI.

But if you look at the space in oncology, now there are 240-250 cancer journals so that we have many more outlets where some of the more basic science and translational science-- certainly, AACR has many wonderful journals-- so that we actually moved away, I think with Carmen's tenure, from the more basic work. And we really are taking almost no basic work. Things have to be clinical, in a sense that there has to be a translational component, cell line studies. And in vitro and animal models are not something that we're covering anymore.

And again, that's a transition that I think occurred in prior years. I'm certainly continuing that. But I think because of my interest in breast cancer, obviously, and outcomes research in psychosocial work, we get more of those papers than perhaps when Carmen was the JNCI editor. But it's stiff competition, you know. We've had a strong epidemiological bent. We still get a lot of epidemiological and genetics papers.

And I guess when I think about what I'm doing, it's really cancer prevention and control. That's what I've been doing for over 25 years, both in my academic research leadership position at UCLA, in my own research, and it's very broad. It's really applying all of the disciplines, if you will, of public health to the cancer problem, which means epidemiology, biostatistics, behavioral science, health outcomes research, you know, all of these things-- environmental science. All of these things are very important in both the etiology of cancer, the prevention of cancer, as well as the management of cancer.

And so it's this cancer prevention and control swath that I think is our niche, if you will. So it's not as narrow as some journals. We're not just doing clinical trials, although we have them. But we're trying to have the broad scope of cancer prevention and control. That's pretty much how I see it.

DANIEL HAYES: OK, thank you so much. Our time has come to an end. I can't tell you how much I appreciate your taking time to talk with us today. But more importantly, taking time to change the field of oncology in the way you have over the last 40 years. I think a lot of the things that our doctors are doing in clinic every day are a direct result of one person, and that's you. And there aren't many people who can say that. So thanks for all you do. Thanks for all your contributions, and I very much appreciate your sharing your history with us today.

PATRICIA GANZ: Thanks so much, Dan. It was really a pleasure to speak with you and share what I've learned over time. Thanks so much.

PRESENTER 2: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts, or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

Listen to ASCO’s Journal of Clinical Oncology essay, “Gosses and the Dalmatian Puppy” by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient.

TRANSCRIPT

Narrator: Gosses and the Dalmatian Puppy, by Zvi Symon, MD 

A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly.

 My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor’s stricture, so radiation therapy became the last option.

On the edge of the bed near the hospital room’s window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: “I don’t feel well and… cannot eat.” His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir’s wife.

“Tell me a bit about Vladimir, what did he do before he became ill?” I drew up a chair and sat closer and she sighed. “He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy

Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk.” A smile flickered across her face briefly. “Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight.” I was touched and saw the tears in her eyes flowing freely. “Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?” I asked.

“We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband.” I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir’s wife told me that she had heard that radiation therapy could help.

And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula.

Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance to say goodbye forever and even to confess and bless and confide? Patients and family are so often focused on the battle against the disease; they are loath to any suggestion of not doing, despite the minimal odds for a helpful treatment. 

I saw Vladimir’s wife struggle to control her tears. She seemed so vulnerable and carried so much on her shoulders. I wondered if a hospice discussion, at that moment, would add to her huge burden. There was also a part of me that also debated, selfishly, if I should launch into a lengthy end-of life discussion with the angry waiting patients outside my clinic door? So often, we turn to our treatment armamentarium to avoid these deeply painful and complex discussions surrounding the end of life, particularly with patients we barely know.

I breathed deeply, calmed myself and decided to keep it simple and avoid the dilemma. I gently explained that I could not guarantee good results, but radiation therapy may improve his pain and perhaps allow him to eat and drink. It was the answer she was looking for, though I grimaced as I wondered if it was the answer I should have provided. She seemed relieved and encouraged Vladimir to sign consent. Vladimir arrived at the computed tomography (CT) simulation suite sitting bent forward on the stretcher, drooling into the bowl between his legs. The radiation therapists, already running behind schedule, looked at each other, as if wondering if this was another futile heroic effort. 

“I know what you are thinking,” I said to them. “But perhaps we can help. Let me tell you something about Vladimir, he had a Dalmatian puppy he loved, who took him out of his home for a walk every day after years of deep depression.” Vladimir was contorted in pain, and the attempt to transfer him from the stretcher to the CT couch seemed impossible. All eyes turned to me with a perhaps this is too much look. Suddenly, Ilan, a young Russian-speaking radiation technologist who had recently joined the department, had an idea. “Vladimir, rest a few minutes. You know, I too have a Dalmatian, let me show you a picture.”

The deep lines on Vladimir’s face faded into a broad smile as he took Ilan’s cellphone to see the picture of the dog. From the look on his face, he seemed to be transported far from the simulation suite, and I imagined him romping with his Dalmatian puppy in a sun-swept meadow with gurgling streams and lush green grass and watched as Ilan then slid him effortlessly onto the couch of the scanner.

The scan was completed, Vladimir returned to the ward, and I retreated to my workroom to complete the contouring of the structures for the radiotherapy plan. It was a nasty 12-cm mass involving the full circumference of the upper esophagus and eroded into the trachea, almost obstructing the left lung. The dosimetrist calculated a conformal treatment plan, and as I approved it, I uttered a little prayer that this would make him more comfortable. Suddenly, Ilan rushed in, hair tousled, pale and agitated, and eyes red. We were too late. On returning to the inpatient ward, Vladimir experienced a massive aspiration and died less than half an hour after we had scanned him. Ilan was terribly upset. As a young therapist, this was perhaps his first patient who died so quickly and unexpectedly.

I tried to comfort him. “I know it hurts, but nothing we could have done would have changed what happened. Did you see his face after you mentioned his puppy and showed him the photo of yours? We did our best for him.”

After Ilan left my room, I reflected on the day’s events. Was Vladimir what the rabbis refer to as a “Gosses?”2 (Gosses is a Hebrew word meaning a moribund patient). And if that was the case, was I wrong to even transport him from his room? When death is imminent in hours or days, Jewish religious law defines a state of Gosses in which it is forbidden to touch or move a moribund patient in case this could hasten death. The guttural rattle of a dying patient, unable to clear secretions, indicating death within hours or days, reminded the rabbis of the sound of bubbling when stirring the food in the cauldron. This onomatopoeia, in addition to a didactive narrative identifying the significance of performing an action which potentially changes the natural course of events, resulted in the analogy that moving a terminally ill patient which may hasten death is like stirring the food in the cauldron which may hasten the cooking on Sabbath, hence the term Gosses. The ancient rabbinic sages from the beginning of the first millenium drew an additional analogy between touching a Gosses and touching a dripping candle at the end of its wick which may hasten quenching of the light. Another aspect of the law of Gosses forbids performing any act which may prolong suffering and delay a merciful death. Thus, moving a patient to receive a futile treatment would also be forbidden under law of Gosses. 

2000 years later, the notion that we should neither delay nor accelerate death was front of mind formeas I reflected on my treatment of Vladimir. I wondered if the ancient rabbis incorporated into their moral discussion the difficulty of stopping the roller coaster of trying to do more and more to help the patient. How about when the treatment itself fell into a gray area of effectiveness? What advice would they have given a physician with competing demands on his time and a waiting room full of outpatients who demanded his attention?

In retrospect, the painful journey of Vladimir down to the simulator may have hastened his massive aspiration and would have been best avoided. In that sense, the Gosses may have

been violated. But it also allowed him and Ilan to meet and share wonderful memories of a Dalmatian puppy which made him smile and forget his pain, even for a few precious moments.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Zvi Symon, until recently Chair of Radiation Oncology and currently Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School. In this episode, we will be discussing his Art of Oncology article, “Gosses and the Dalmatian Puppy.” Our guest disclosures will be linked in the transcript. 

Zvi, welcome to our podcast and thank you for joining us.

Dr. Zvi Symon: Thank you, Lidia. I'm very happy to be here.

Dr. Lidia Schapira: To start, I'd like to ask authors to tell us what they're reading or perhaps what they've enjoyed reading and would like to recommend to fellow listeners.

Dr. Zvi Symon: Okay, so it's been a bit of a stressful time reading, but I may mention some books I've read in the last few months. I've been reading memoirs. One that I particularly found very touching was Paul Kalanithi's, When Breath Becomes Air. As a physician who had cancer himself and his struggle with his transition from being a consultant neurosurgeon to being a terminal lung cancer patient, I think it's an amazing and beautifully written and touching book. 

Dr. Lidia Schapira: It’s a beautiful book. It's evocative and fresh. And you're absolutely right - we're completely in sympathy with and empathic with his amazing desire to live life till the last moment, right? It's just beautiful. 

Dr. Zvi Symon: It’s really beautiful. And I think that memoirs is a very powerful genre for me. And another book that I enjoyed very much is Jan Morris' Conundrum, which is a story of a person who made a transition from male to female over 10 years. She was actually a member of the British team that climbed Everest and a journalist in The Times. It's a beautiful book describing what she actually felt inside and how she went through the medical process as well, of her sex change. And it's also beautiful.

Dr. Lidia Schapira: Thank you for that. I haven't read it, but I will add it to my lovely list here.  

Tell me a little bit about writing and what that means for you. Are you somebody who has been writing throughout your career, or was this a story that sort of popped for you, that just needed to be told? 

Dr. Zvi Symon: Right. I think it goes back to when I was a high school student where my Math teacher told my parents, "Your son shouldn't do medicine. He should study English literature." My parents were devastated by that statement because my father was a physician and my mother's family were all physicians, and they were very angry at the time. And I was kind of a writer in high school, and then I kind of left it through my medical career. And now, as I have sort of finished my stint as the chair of the department and I have a bit more time on my hands, I've sort of tried my hand at getting back to writing. I needed to read a lot in order to do that. So I was reading genres. I think maybe some of the initial versions of this piece were written sort of more as a memoir, rather than an article for the Art of Oncology. And I think you guys helped me a lot. 

Dr. Lidia Schapira: I'm so glad to hear that we helped. Sometimes editors aren't particularly helpful in the views of authors, but I'm glad you feel differently.  

So let's talk a little bit about the creative process and sort of bringing in all of these themes that you did here. And back to your prior comment that this is in the memoir genre. You have a very interesting philosophical discussion of what a Gosses is and sort of the ethical moral conflict when a patient is extremely vulnerable, instead of recognizing when perhaps all that you need to do, or perhaps what you need to do is to be present instead of trying to fix or intervene. And I loved how you made us all really suffer with you, as you're debating this internally. Can you talk a little bit about that part of the story?

Dr. Zvi Symon: Yes, I think just to put it into context, in my training in internal medicine, I worked in a hospital where hospice care was part of the rotation in internal medicine. I spent three months in the hospice, and at night, when we were on call, we were in charge of the ICU and the hospice. So you would be called to treat a patient in pulmonary edema and with CPAP, or intubate him or an acute MI, and then you would be called to a dying patient in the hospice. And the transition was initially very difficult for me. I actually felt my feet would not carry me to the hospice, and I didn't want to go there, and I had to kind of force myself. But after some time, I realized that it's actually much easier to treat pulmonary edema  to than be able to sit and listen and talk to a dying patient. But the fulfillment that I began to feel when I overcame that kind of fear of going to speak to a dying patient, the fulfillment was far greater than getting somebody out of pulmonary edema. And that's kind of stayed with me to this very day. 

So although radiation oncology is a kind of something you have to do, and you sort of radiate, when I'm called to patients like this, and I do have time, then I kind of sit down with a patient and discuss the options and try to give other options because very often it's a kind of turf in the house of God. Somebody doesn't want to have that conversation with a patient, and they're kind of turfing the patient in a house of God sense to have some radiation. And I'm not sure that radiation in such cases– So this is something that I'm confronting quite often in my daily practice, and it becomes more and more complex culturally because when one is confronted with families who also want to be very active and are dreading having to live with the idea that maybe there's something they could have done that they never did, and they're putting a lot of pressure, then it's a very tough situation. So I'm very sensitive to these situations. 

I've often had end-of-life discussions with patients like that, sometimes against the wish of families that are close by. And the patient would say- well, they'd say to me, 'No, don't talk to him." And the patient said, "No, I want you to go away. Because I think this is the first time someone's listening to me, and I want to hear what he has to say." I feel very passionately about these–

Dr. Lidia Schapira: I have so many comments that we would need hours to discuss. But, of course, the first comment I wanted to make is that some of the most humane oncological specialists I know are radiation oncologists, so I don't see you guys as just treaters and physicists wearing scrubs. I see you as incredibly compassionate members of the cancer team.  

And that brings to mind a lot of the current discussion about palliative radiation, this idea that we can just throw some rads at people because there's nothing to lose and maybe there'll be some improvement in function. So can you talk a little bit about that? I mean, here you are in a very busy clinic falling behind. You've got to walk through a waiting room of people who are sort of looking at you saying, “How can you be walking out when we had an appointment with you half an hour ago?” And you go and find Vladimir, who's despondent and can't have a conversation with you. And I'm pretty sure that you must have been going through this internal conflict even before you met your patient about what to do. Tell us a little bit more about the emotional impact for you.

Dr. Zvi Symon: Yeah. With great trepidation, I actually go up to the department to speak to a patient like this. I think the electronic medical record, for all the problems with that, it allows us to kind of really quickly glimpse and get a true picture of what the situation is. So I had seen the imaging and I'd seen the size of this really very nasty tumor. And I sort of remembered the literature that it's a relative contraindication and it actually may make things worse. But I was getting calls from the department and the medical oncologist who consulted that I must see this patient, and they want that patient to get treated today. So with a kind of a heavy heart, I go up the stairs. I breathe deeply on the way to calm myself and take the staircase up to the 6th floor and walk very slowly up the stairs, trying to go through my mind, what am I going to do, and kind of enter the ward. And then I am confronted by this person who is terribly suffering, very terribly. And he doesn't actually want to look at me at all. His eyes can't meet and he looks kind of, his eyes are very dull. And I see his wife watching me and watching him and turn to her. They are immigrants to the country. And there's also a cultural issue and language problems and difficult socio– 

Dr. Lidia Schapira: If this were fiction, you could not have made it harder. I mean, when I remember reading the manuscript thinking, this poor immigrant, he's depressed, his son is depressed, the other son has COVID, his wife is weeping and says she's the one who's tried to make ends meet. You have all of these barriers in addition to this internal clock that you have somewhere else to be. Can't begin to imagine the pressure. So how did you get through that?

Dr. Zvi Symon: Yeah, I think my mind was kind of ticking over and I think that sometimes we make very practical choices. And I knew that if I sat for too long and I fired a warning shot and said, “Well, this may not help and this may not do it,” but I think that culturally I had the feeling that it was the wrong thing to do and that there was an expectation and the expectation had been created by the team, and it's very difficult to turn down that expectation. And I also felt that she was so frail and that she had really no support and maybe if one of her kids would have come within half an hour, I would have said, “Well, I'll come back after my clinic in the afternoon and let's have a chat with your son.” But the situation was such that I thought, “Well, you just have to be practical and you have to get back to your clinic.” It's a hard feeling that we make value decisions just because it's more comfortable for us. We want to finish our clinic and also go –

Dr. Lidia Schapira: No question about that. Yes, and I think the reader will feel for you, as I did when I read it. I mean, I could immediately sort of imagine all these things playing out. So you follow your intuition, you assess it, you say, “Okay. We'll give it a try,” right? And then you have your team to deal with and your lovely radiation therapist, the technologist who gets personally involved. And then you introduce the idea that perhaps connecting with something in Vladimir's recent past that brings him joy. Can this image of this puppy romping through the fields, is something that can maybe help you all? Like the glue, the emotional glue that keeps you together. Talk a little bit about that part, about how you tried to bring this element out in the story, to give another dimension for the reader, a view not only as the physician giving Vladimir care, but also leading your team.

Dr. Zvi Symon: So I think that an open question to a patient about their– “Just tell me a little bit about yourself,” is an invitation for a person to tell you about the things that they care most about, about the people they love most, that the things were of the most importance in their lives. And I think that kind of human connection, if we can kind of latch onto that and harness that to improve the way we communicate with the patient and the way we get the rest of the team to communicate with the patient, I think that can be very powerful. I mean, I myself love dogs, and I was like, really, my Border Collie just died a few months ago, and we buried her after 12 years, and she was a wonderful animal and part of the family. And in the two minutes that I had to listen to- that's what she told me about, she told me about the dog. And when I tried to motivate the team to add him as an urgent sim and he wasn't cooperating, then it just occurred to me to tell them about it.

Dr. Lidia Schapira: It worked. It was amazing.

Dr. Zvi Symon: And it worked. Yeah.

Dr. Lidia Schapira: It was a beautiful story. I too, am a lover of dogs. I have a wonderful puppy now, and he brings tremendous joy. But your message is so full of compassion and humanity. It's basically back to Dame Cicely Saunders' idea that you want to know who the person is that you're treating and you want to know what matters to them. And so here you caught this moment of connection with the family and with the patient and with your young radiation therapist who needed to feel that he was actually helping this person. So it's a beautiful story. I want to just give you a chance to finish the interview by telling us something perhaps that you want the readers or the listeners to take away from your piece.

Dr. Zvi Symon: Well, I think that the situation of, I think as physicians, we don't really ever know when the patient precisely is going to die. And the whole idea, I think, of a Gosses and my thoughts about the Gosses were, because it's sort of defined within Jewish religious law, someone that is going to die within 72 hours. Now, it's very difficult to define. We don't know that. We never do know that. But I think that that sensitivity to the comfort of a suffering patient and offering a treatment that may be futile or that is highly likely to be futile and that may be involved in an enormous amount of discomfort, I think that we have to be able to sit down with these patients and with their families and discuss other options as just very good sedation and not necessarily, I think, doing, but rather just being there, as you mentioned, for the patient.

Dr. Lidia Schapira: It's a beautiful thought, and I think we all agree with you. And I think what made this story so poignant is that here you are, that time is compressed and you're introduced to the family as somebody who potentially could help fix something or provide something. So it's very difficult to step back, as you say, and do the deep work of sitting and talking and counseling and accompanying. But I think your humanity comes through and your desire to help comes through beautifully in the story. And I really thank you for bringing this concept to our attention. I think that it may be an old idea, but one that is still very relevant. And thank you for sending your work to JCO.

Dr. Zvi Symon: Thank you very much.

Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes

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Guest Bio: 

Dr. Zvi Symon is a Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School.

One doctor finds respite in an unusual situation.

Read the related article "A Pathologic Fascination With Humanity" on JCO.org

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on his podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Cancer Stories, The Art of Oncology podcast series presents Robert Bailey reading the essay, "A Pathologic Fascination with Humanity," written by Timothy Gilligan, published on February 1, 2018.

A Pathologic Fascination with Humanity, by Timothy Gilligan.

That was not what I expected to find myself feeling as I lay on a gurney, awaiting my first screening colonoscopy. I was in the pre-procedure area, and a nurse was coming to put an intravenous tube in my arm. Then I would be wheeled to the procedure room, where I would receive sedating medications. And then I would have a long, flexible tube explore my insides, bur I found myself not at all worried about that.

What I felt was a huge weight lifted from me. For the first time that I could remember, I was in a situation in which I could not get any work done, no iPhone email, no editing a book chapter or closing a patient record on the computer, no reading, no writing, no returning patient phone calls, emails, text messages or communications via the electronic health record, no pages asking me to change the date on someone's chemotherapy orders or to confirm that I really, truly did not want intravenous contrast with the scan I had ordered without contrast for a patient.

I felt I had permission to stop thinking, so I lay back, closed my eyes, and took a deep draught of this freedom from responsibility. I was particularly delighted when the gastroenterologist explained that the sedating drugs would impair my judgment so that I should not do anything important or potentially dangerous, such as driving, after the procedure.

Five hours to be completely unproductive, what a gift. It was the best part of my week.

I found myself wondering why I had let my life become like this, and I know I'm not alone. These are the components of modern medicine-- 100 emails a day, sometimes more, a cacophony of access points through which people make contact, an expectation to be on all the time, lest we leave a patient less than 100% satisfied and then face the dreaded drop in our patient satisfaction score.

If 89% of my patients report that I always communicate well, I'm in the top 10% of the nation. But if only 80% say I always and 20% say I usually communicate well, I drop into the bottom 50%. And God forbid I fall another 2% and only 78% say I always communicate well. I'll find myself in the bottom quartile of American physicians.

The good news I received this week is that none of my inpatients had returned the survey. I was safe. It was almost as good as being sedated for the colonoscopy.

One of the challenges in oncology is learning to help patients manage the burden of cancer without becoming overwhelmed ourselves. There are days when we give several different people life-altering bad news, and if we allow ourselves to be fully present, we sit with them holding and considering this huge weight and planning how to cope and move forward.

On top of this age-old responsibility, we are now rated and measured constantly. Patient satisfaction, relative value unit productivity, and expectations to remain the same workflow with fewer and fewer hands on deck. And looming over everything, will we meet the budget?

Is that why we went to medical school, to make budget? Or did we have some loftier goal? The holy grail when I was training was to find cures, now, it is balancing the books.

Don't get me wrong, I love medicine. It makes me sad when I hear colleagues say that they would advise their children not to choose a medical career. I don't feel that way. If mine decide they want to be physicians, I will encourage them to do so, and I will tell them to take several accounting classes in college to make sure that they are fully prepared.

With all these extrinsic pressures though, it makes you wonder what a career in medicine is all about. Our institution recently offered free access to an online webinar called Making Physicians Better, which featured horror stories of physicians acting unprofessionally. It advised faculty on how to teach professionalism.

I worry because a number of studies in the social science literature report that it is more effective to call attention to good rather than to bad behavior. Stories of bad behavior encourage people to think of bad behavior as normal. If others are doing it, I guess it's OK for me to, seems to be a human response.

I found myself reflecting on what inspired me to reach for a high level of professionalism. I remembered my residency program director coming into the emergency room of a patient of his showed up there so he could help guide the care. I remembered him making house calls on one of his patients, whom I also cared for.

I remembered my mentor and fellowship saying he wanted to hire oncologists who lay in bed at night reflecting on whether they had made the right decisions with their patients that day. I remembered my medical school mentor telling me stories of how he had risked his reputation with colleagues and supervisors to do what he thought was best for his patients.

I thought of the dedicated colleagues I now work with, who despite the stressors of the system, consistently put patients first. I remembered the warmth and kindness my infectious disease attending from New Zealand showed to patients dying of HIV/AIDS when I was a medical student.

These are the kinds of physicians I want to be. It is much easier to define a path if you navigate toward something desirable rather than away from something repugnant. But what is the antidote to all this pressure to see more patients, create more revenue, satisfy everyone, complete all the paperwork, make the budget?

I remembered the beginning, when I was applying to medical school. At one school, my first faculty interview was in the Nuclear Medicine Office in the basement of one of the medical buildings. I navigated my way to the office and knocked on the door. No one answered. I tried again. Five minutes later, the door opened, and the irate radiologist asked, where have you been?

He asked me why I wanted to be a physician. I told him that I thought medicine was intellectually fascinating and that I aspired to work to improve public health. Those are completely invalid reasons to become a doctor, he responded. Medicine is only interesting while you are learning it, he told me. Once you're in practice, it's just the same thing over and over again.

You become an expert, which means you already know what you need to know. And as for public health, he said I should go to the public health school instead. The public health official wants everyone vaccinated, he said, whereas the physician wants everyone except his patient vaccinated.

There was only one sound reason to go into medicine, he said. You should only become a doctor if you have a pathological fascination with humanity. He told me that my life as a doctor would be run by my patients and that the only thing that would keep me engaged would be if I were endlessly interested in people.

It is ironic that I heard this from a radiologist, and 25 years later, in the middle of my career, I realized that he was correct, not about everything, but about what sustains a career in medicine.

The day after my benzodiazepine and opioid-induced mini vacation in the colonoscopy suite, I was back in clinic, immersed in caring for people with cancer, hearing about their symptoms, their fears, their hobbies, their children, their vacations. I do have a pathologic fascination with humanity and that's what keeps me going.

I'm Lidia Schapira, your host for Cancer Stories, the Art of Oncology podcast. I want to welcome our guest for this podcast, Dr. Timothy Gilligan, associate professor of medicine at the Cleveland Clinic and author of the essay, "A Pathologic Fascination with Humanity," published in the February 1st issue of JCO. Welcome, Tim.

Thank you, Lidia. It's a pleasure to be here.

You have written an essay that really resonates with a lot of readers. It starts with this amazing scene, where you tell us you find peace on the gurney waiting for a colonoscopy. Tell us a little bit about what led you to write this and what you've heard from colleagues.

So I mean, it really was a striking experience, to be having this experience that most people kind of dread and instead, just to feel so relieved. When my iPhone was confiscated from me and I could no longer check my email and text people, I was surprised at just how freeing it was and to just be able to lie down and feel totally forgiven for being unproductive.

And I think for me, writing comes-- like, I relate to the whole idea of the muse. It's almost like giving birth, like there's something that needs to come out, and this felt like a story that I needed to tell.

When I first wrote it, I actually was reluctant to publish it, because I thought, this is just personal about me. No one else is going to care about it. But a couple of my friends said, no, you really should submit it, so I did.

And we are so lucky that you did. So you have some wonderful deep reflections in there that I wanted to ask you a little bit about, and they have to do with how complicated our lives are professionally, how we are judged or valued or evaluated by some very, it sounds like bizarre mechanisms. Tell us a little bit about that.

So yeah, I think, my sense for physicians is that we tend to be self-motivated people. We've pushed ourselves our whole lives to get into a good college, to get into a good medical school, to get through our good residency program and to get through our training and to impress our patients and our peers.

And so for instance, for me, when I went to medical school, I really preferred going to schools that didn't grade, because I felt like I push myself hard enough without this external metric constantly being applied to me. And there are a number of medical schools that don't grade in the early years, it turns out, as many of our listeners will know.

And now, I found myself in this context, and a lot of my colleagues obviously, too, where we're constantly being measured and judged and told that we're inadequate if we don't meet certain metrical standards that are being set for us. And it's not that I object to the idea of measurement. I'm all about quality, and it's very hard to improve if you don't measure how you're doing, but I think the psychological experience of constantly being rated, in some levels, is kind of degrading.

Like, if everything you do, there's someone standing next to you saying, on a scale of one to 10, you just did a seven. You just did an eight. It's a little infantilizing and it doesn't, I think, make physicians feel like they're getting the respect of people who work hard and don't need to constantly be reminded.

And so it's a delicate thing. Some of the metrics are important, but it's created in an environment that, I think, is degrading at some level for doctors, and it contributes to burnout, which is something I'm very worried about.

So on a more serious note, help me understand what you think went wrong along the way. People started to introduce these metrics for some good reasons, as you say, to help people improve, perhaps, but something's gone wrong. What do you think it is?

I think it's complicated, and I'm not inclined to blame other people for my problems. So in some sense, I feel like we, in medicine, bear some responsibility for not maybe taking responsibility for fixing our own shortcomings and that's part of the reason that we now have a bunch of external people doing it for us.

But the rise of administrators-- I've seen graphs that look at the number of clinicians versus the number of administrators in health care, and health care is increasingly dominated by non-clinical people, it feels like. And they're trying to come in and measure our quality and help us improve quality and it's hard to do that without measuring everything that we're doing, but it's not being done in a way that takes into account the day-to-day day experience, I think, of the people practicing.

So I think, for me, one answer is, as physicians, we need to play a front and center role in quality improvement and patient experience and clinician experience and really try to own our environment and own responsibility for it, because if we don't do it ourselves, then other people will do it for us, and the way they do it is often not very palatable for us.

I know you've been very interested and a champion, really, in promoting the teaching of communication skills. Do you incorporate some of this into your teaching? Do you have your students or your peers, who are going through these workshops or trainings, actually think about how they're viewed and how they're evaluated?

It's interesting, to some extent, because when we-- our hospital, it's actually been mandated that all the physicians go through communication training. And so we've tried to be very thoughtful about making it an experience that would be a good experience for them, something they would enjoy and find helpful and meaningful and relevant.

And they often show up very annoyed, thinking that they're only being told they have to work on communication skills because their scores aren't high enough. So we actually have tried to dispel that. And one thing that we did is we really focus on having clinicians teach clinicians, so that the people teaching skills were people who were also seeing patients and knew what it was like to have a backlog of patients and trying to catch up and not being able to spend all the time in the world and having to document.

And so it felt to them like, I think, the people teaching knew what this was like. But it was a hurdle we had to get over to get people to stop talking about the scores and the metrics, because they were frustrated by that. And I think that if you focus on the metrics, that's not the best path towards improving performance all the time.

In your essay, you take the reader back to the sense of needing to reconnect with your sense of vocation, I think. What comes through is a real optimism and sort of this interest and intellectual and total engagement in being curious about who the patient is. Tell us a little bit about how that's resonated with readers and with colleagues.

Yeah, I've been heartened at how many lovely emails I've gotten from people around the country. My fellowship program director wrote me and old friends where I trained wrote me and people I've ever met before have, saying that it resonated with them.

And a couple of lines that stood out for people-- I think one thing I've heard a lot is what I wrote about, it's easier to improve if you're navigating towards something you desire rather than away from something repugnant. So it's been helpful to get that feedback.

I think, for me, what ultimately recharges our batteries, or my batteries anyway, in medicine is the human connection with the patient rather than some scientific fascination with the illness. And I think we can get separated from that. There are a lot of distractions, charting, and these metrics and all that stuff.

I think that when we can help people reconnect with just the meaning of the relationship with the individual person who's fighting an illness and any loved ones who they have with them, that that's ultimately where we get the most satisfaction at the end of the day.

I recently had lunch with a medical school classmate, who I thought put this very well. He said to me that he had been doing a primarily administrative job and had gone back to clinical work. And one of the reasons he was really happy about that decision is he said when he went to bed at night, he felt like he'd done something worth doing, I think, those human moments, working one-on-one with people.

So with all the wisdom and lessons learned, how can we find a little bit of that warm sense of vocation and peace without having to lie on a gurney waiting for a procedure, feeling physically drained?

I had a number of colleagues write me that I needed to find a better way to relax. That if I view going to a colonoscopy as going to the spa, that I need to revisit my life. I think it's hard. I think all of us who sign up for clinical careers know it's going to be long hours and hard work.

I think the couple of things that I find-- well, I think there are three things that I find helpful, so one is to talk to colleagues. And because I think, one of the wonderful things about medicine, I find, is the camaraderie and the teamwork. And to make time to talk about our experience with each other and what's working for us and what's frustrating, I think in those conversations and connections, we have opportunities to recharge our batteries.

I run the training program where I work in the fellowship of hematology oncology, and I stress to our fellows that I think to survive a career in medicine, you need that something outside of medicine that you love, whether it's music or a sport or something to do with your family or something that's really for you. For me, I'm a fanatical tennis player, but it can be a lot of different things for different people. I think that's really important to get your head out of the medical space for a while.

And then also, with patients, I think we get trapped in this problem-solving mindset, where we look at the patient as a list of problems that we need to address. And that's, I think, as not as rewarding and a way to spend our day. If we can see them as a human being and connect with them as a person and learn about them as an individual, take a little time to find out who they are when they're not sick and what's going on in their life, I think that also we find meaning and depth in those connections and that helps sustain us, as well.

So those are the three things that I'm hopeful about. I'm hopeful that the electronic medical records will get better. They're a major source of burnout that there's not an obvious fix for that right now. But I think that over time, I'm optimistic that the people who design these things will get better at it.

And your love for the profession and for humanity really, really sparkled in this essay. So the other comment I just had listening to you is how important it is to create a community of colleagues. And we hope in a way, that through these essays and these podcasts, we also will stimulate dialogue and connection, perhaps even among people who don't know themselves but who read and have access to the same wonderful material.

So thanks, Tim, for all the work you do every day, and thank you very much for writing and sending that beautiful essay. Thank you, and that will end this podcast.

Thank you.

Listen to ASCO’s Journal of Clinical Oncology essay, “Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care” by Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital.

TRANSCRIPT

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. In this episode, we will be discussing his Art of Oncology article, "Market, Gift, Everyday Ethics, and the Emmanuel Levinas in Patient Care." 

At the time of this recording, our guest has no disclosures. 

Alan, welcome to our podcast, and thank you for joining us. 

Dr. Alan Astrow: Thank you for inviting me.

Dr. Lidia Schapira: Your article has a very long title, and we've got Markets and Gifts and Ethics and a philosopher. So let's start by helping our listeners and maybe our readers to really understand the intention of this essay. What is the message of the essay?

Dr. Alan Astrow: The message of the essay is that we need to be reflecting and be mindful of the values that underlie medical care as we practice every day. 

Dr. Lidia Schapira: And if I were to quiz you a little bit on that and push a little bit, what are those values? And how does perhaps market conflict with ethics and mission?

Dr. Alan Astrow: Trust, caring, honesty, thoroughness, dedication to the patient, focus on the patient and the patient's needs. The problem with market or the danger of market is that it can sometimes distract us from focusing on the patient and that patient's needs.

Dr. Lidia Schapira: So how would you respond to somebody who says, but we need organization, we need markets and finances in order to have a system that provides health care? Where do you see the front of conflict, perhaps between those who are more mission-driven, as you've just beautifully articulated and have the trust in the patient's care front and center, and those who are more concerned with the productiveness and efficiency in collections?

Dr. Alan Astrow: I have tremendous respect for my administrative colleagues who are focused on keeping hospitals solvent. I worked at a hospital earlier in my career that was not focused as it needed to be on making sure the hospital had a sound strategic plan. And that hospital is now condominiums. So, absolutely, we need to be aware of financial realities and hospitals need to pay their bills. But underlying that, we can't think that the first mission of a hospital is to earn money. The first mission of a hospital is to provide service to those in need. And then our colleagues in administration have to help us find ways to do that in a manner that's financially responsible. But we think first of the patient and that patient's needs. 

And patients understand that. Patients don't want the hospitals to go bankrupt, and patients want their doctors and nurses to be paid. Patients do worry sometimes, with good reason I think, that the system may be overly focused - that's the issue, it's an issue of balance - overly focused on markets, overly focused on finance. It seems as if we're living in a world in which money is driving everything. Money is speaking with too loud a voice. That's the issue. Money is important. But the needs of the patient and what our mission is to patients have to be the driving force of the hospital. That has to be the predominant voice, the loudest voice. Markets should be serving the patient and the patient's needs, not the other way around.

Dr. Lidia Schapira: I think I understand that clearly. But now let's talk about the gift that's in the title, and that, in my mind, was a very imaginative way of presenting what we bring that is not just a service. Talk a little bit about how you understand the gift of presence or the gift of caring. 

Dr. Alan Astrow: The gift is when you're really lost in the task itself. When you're really focused on that patient in front of you and trying to understand the patient and trying to address the concerns that the patient has. And during those moments when you're focused on that patient, you're not thinking about money. No, you should not be. But the first predominant impulse needs to be what the underlying mission of that organization is. And in medicine, it's caring for the patient. 

And so, for example, when we hear administrators saying we're going to reach out to this and that market, well, that to me shows a mistaken focus. We understand that the hospitals need to raise money from banks and other places in order to make needed capital investments. But we need to think first and foremost about the people in the communities we serve, and then the markets should be at the service of people and communities. I think in general, it's a larger issue. The power of money is speaking in too dominant, in a way, in too many aspects of our world. And medicine, above all, needs to resist that. And there's a manner in which healthcare institutions are functioning these days which I think leads patients to have reason to doubt. And so if they have doubts about what our primary interests are, they will lose trust. And the loss of trust is devastating to the medical relationship.

Dr. Lidia Schapira: Let me explore that a little bit with you, Alan. I would say that in my mind, providing that caring presence is part of the mission of medicine, but you talk about a dimension of gift. Help me and our listeners and readers understand a little bit more about the gift. You talk about the gift being something that's exchanged, that there's even a reciprocity in giving and receiving gifts. How are we to understand that perhaps through the lens of the philosophers and the big thinkers here?

Dr. Alan Astrow: I'm borrowing this from Lewis Hyde. He was referring to a traditional gift economy. And according to Hyde, who is taking this from cultural anthropologists, that in many tribal communities, tribal societies, just, for example, in the Native American cultures in our land that were not cash-based, they're based upon a notion of gift. You would provide a gift to the other without any expectation of payment, but there was a passive understanding that at some point that gift would be returned to you. And that's how these societies, according to cultural anthropologists of course, it's probably hard to pin this down, but that's the way Hyde has presented it. This was the base of the economy of gift-oriented cultures.  

And he was surmising that there's always an element of gift he felt was particularly in the world of creative artists, because if the artist is just thinking about how he or she could make money, their work is not likely to be very good. The artist needs to focus first on the gift dimension to it, the part that comes to them really as a gift. Your talent is a gift, and you may be able to see that your talent as a physician is a gift. And so much of our skill really comes from the gifts that others have given us in a way. 

Just think of our training. We think about how hard we worked and it's true and how many years we gave into our training. But isn't it also true that we learned from the illnesses of others? They shared their stories, they shared their experiences with us even when we didn't know that much and we didn't have that much to offer to them really. We were relatively unskilled. We developed our skills through treating people who presented themselves to us in a way hoping that we would help them, certainly. But their presence to us, since we were not well-trained at that point, was a bit of a gift. That's how I would see it. 

And if you see it as a gift, perhaps it could help us in our orientation toward the service we need to provide to others, those moments when we might feel somewhat resentful. Well, maybe it's a good time to just remind ourselves a bit. Not that I don't feel resentful or exhausted or- I'm just like anyone else, but I can remind myself that yes, it's a gift to be a doctor or a nurse. I believe, I really believe that. In so many fields there's so much just about the finances and the bottom line, and that's not true about being a doctor or a nurse. That's not ultimately what it's about. And it's one of the great pleasures of being a doctor how we can help other people with our skills.

Dr. Lidia Schapira: When we hear the word "gift," unfortunately, our minds may go to things that we need to declare that could potentially be conflicts. But you're talking about gift in a totally different way. You're talking about giving the gift of our presence and recognizing the gifts that our patients give us by teaching us, by allowing us to learn from their experience through their experiences. And in your essay, you talk a little bit about appreciating this and have an impact on the culture of medicine. So, can you talk a little bit more about how this appreciation of gifts exchanged and time spent together and talents shared can impact favorably on the culture of medicine even perhaps, as you're hinting, improve our sense of wellness or reduce our risk of burnout? 

Dr. Alan Astrow: When we think of our work as partly a gift we can give to others and a gift we have received from others, I believe it enhances our morale and the morale of whatever enterprise we are part of. If we all, I believe, are able to appreciate more of the dimension of gift in healthcare, it has the potential to have us see things differently, organize the way we care for patients and each other differently, and potentially transform our whole system of care. Because finally, it starts with one-to-one encounter, I believe. But the one-to-one encounter is influenced by the larger systems that shape what we're able to do. So, I think if we doctors and nurses are able to articulate a gift dimension to care, I think we can help our administrators see it that way. 

Because I think my experience working with many in administration is that they have chosen to work in the field of healthcare because administration wants to see it that way, too. Many of our most talented administrators could be working in other fields - finance, law - they could be making more money in other areas. But they chose to enter healthcare because they do want to provide service to others. And it may be that many in administration, but many of those who are responsible for keeping hospitals financially solvent, are just as concerned as we doctors are by the overweening presence of financial concerns as they more and more dominate our day-to-day lives as physicians, nurses, and others in healthcare.  

I don't want to sound like a Pollyanna here. We do have to be able to pay for things, no question about it, and there's no simple solution to any of these problems, and how should healthcare be paid for? Should we have single payer? These are complicated issues. But I think if we think about it, we should think about how we can organize our system of care so that we can further enhance the dimension of gift. That would be the point.

Dr. Lidia Schapira: Well, we really appreciate the depth of your reasoning. It certainly is appealing to me, and I hope that it resonates with many of our readers. You've made a very strong pitch here for humanizing and really putting mission front and forward in your incredibly erudite way. 

So, Alan, how does Levinas enter our conversation? And how does Levinas enter the thinking that you had in putting these pieces together for the essay?

Dr. Alan Astrow: So Levinas is one of the great thinkers of the 20th century, and his core insight is that the reason we are here as human beings, in his view, is to bring the ethical order into being. So we're not here to earn the maximum amount of money. We're not here to face our own mortality. No, we have a specific purpose to bring the ethical order into being. And, as doctors and nurses engaged every day in actions that we're trying to help people, he would claim that we should be trying to bring the ethical order into being in healthcare in our day-to-day actions. He was very focused on the idea of face-to-face ethics, that it's in the experience of the other, seeing the face of the other, that you need to respond. We ought to respond to the needs of the other. At that moment, we're not thinking of ourselves at all. We're just responding to the needs of the other. And in that way, we are bringing the ethical order into being. 

Dr. Lidia Schapira: So the dimension of gift giving is layered onto this ethical order. How do we put the two thoughts together?

Dr. Alan Astrow: When you give a gift, ideally, you're trying to think about the other. You're trying to think about what the other needs. The gift is not about you. It's about what's going to make the other happy. It's what's going to make the other feel acknowledged. That's what the nature of a gift is. And you're not really expecting anything back. In medicine, too, it's not about what the patient could do for us, it's only about what we can do for the patient and the patient's needs. So, it's a true gift of the doctor to the patient. And that's why the patient can feel trust in us because they sense that it's a gift of us to them. We are not expecting patients to do anything for us at that moment. We're not expecting them to be paying us, although we hope we'll get paid. We're not expecting them to enroll in a clinical trial, although we might eventually hope that they will. But at that moment, it's pure gift. That's where the trust comes from. The gift comes first, the others later.

 Dr. Lidia Schapira: So one could argue, Alan, that that is just the ethical conduct of medicine, that there is no extra here, that there is no gift, that that is just how we should behave. So help me understand a little bit more then, about how you understand gift. From my experience, as I was taught by cultural anthropologists, gift can be a gift of time, gift can be a gift of presence. And it is those sorts of additional things that we convey through our actions or transmit through our presence. Reciprocally, we also are gifted by our patient's presence and by their gift of spending the time they have left with us. How do you understand gift?

Dr. Alan Astrow: Okay, so you're saying a gift is something extra that we add on. Okay, I can accept that. I wouldn't deny that. My point would be that, yes, a gift orientation is central to the ethical practice of medicine. Yes, it is the ethical practice of medicine. But what we're seeing in our current world is that that orientation is increasingly threatened. Isn't that what we're seeing? That doctors are selling practices to private equity? That we have more and more for-profit businesses in healthcare? And it seems in too many places, patients fear that the primary focus is not on the gift dimension, but the primary focus more and more seems to be on the mercantile aspect, the money aspect. So my point would be that, yes, we ought to know what the ethical practice of medicine is. But it's too easy to forget, isn't it? And don't we see that that's what's happening? People are forgetting. We all need to be reminded - who is going to remind us? 

Dr. Lidia Schapira: Thank you, Alan, for your contribution.  

And to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
The Bomb, Andrea M. Watson. I sit paralyzed at my desk. Everyone has left the clinic. I can hear the sound of the broom in the hall as the after hours cleaning begins. No phones ring. No patients hurry to appointments. No chatter lingers in the air. The silence is oppressive, the air is heavy, and the distance from my office to the hospital an eternity.
I've just hung up the phone with the radiation oncologist. His words echo in my head. "Radiation will cause more harm than good. I'm sorry. I wish there was something more I could offer." Dread rises like a tide as my last hope recedes. I want to share the burden of this terrible news. But all my colleagues have left for the day. And I am alone.
I'd been taking care of Mallory for nine months when the progression of her disease took me by surprise. Her tumor had responded so well to upfront radiation followed by nine months of intensive chemotherapy. With just a few months of treatment left, the end was in sight.
Mallory was an avid JRR Tolkien fan. And plans for a Make a Wish Foundation trip to New Zealand were underway. She wanted to see the Lord of the Rings filming location and visit the small hobbit village she'd read about in travel books. She wanted to wait until it was summer there, our winter time, to travel.
When Mallory's disease progressed on therapy, that fall, the timeline shifted. Goals shifted. There was no realistic hope for cure. There was just hope for time. The trip became the goal. And she bravely chose to continue with aggressive treatment, hoping it would open a window of time for travel. But further progression got in the way.
When the futility of chemotherapy became clear, hopes were pinned on radiation to buy time. Now hanging up the phone, I realized that this strong, brave, beautiful 16-year-old girl who had been through so much will never get to New Zealand. And I have to tell her that tonight. I start out toward the hospital. But walking through the hall, my steps slow, my chest becomes tight, and my head swims with the devastating message I carry.
I stop and look blankly at the man sweeping the floor wondering if he can tell I am carrying a bomb meant for a young girl and her family. He keeps sweeping, unaware. I trace my steps, fighting back tears. Back in my office, the sobs come. I cry for Mallory, for her parents, for her little brother and her best friend, her sister, for all they would never share together and for all the sorrow they had already faced.
I cry for myself and for the terrible burden of delivering the blow, extinguishing the candle of hope that this trip had become, and speaking the words they'd dreaded since the moment we met. And when the tears finally stopped, I am empty. I take a deep breath and walk out the door.
Mallory is not surprised by my news. Her gaze shifts away from me to a far off place. Silent tears stream down her face. And she says, "I know." That's all she says. I meet with her parents alone in the family room. Their reaction is raw and palpable. Flooded by tears and sobbing, they cling to one another lost in a storm of grief. When her brother and sister join us, I unfold the news slowly, choosing my words with great care as the disbelief on their faces quickly melts into sorrow and then tears.
My heart feels as if it will break. I sit quietly by trying to fade from the scene that plays out before me. I fight back the tears but lose. I have done my job, delivered the bomb. There is nothing more to do but bear witness. Then something beautiful happens.
Mallory's parents silently hug one another with new resolve and in turn embrace their children. Without a word, they stand up and walk together into Mallory's room. Hand-in-hand, they pull her in and encircle her with fiery love. I quietly take my leave feeling the power radiating from the room as I walk down the hall and out of the hospital into the night air.
Mallory's funeral program bore a poignant quote from the Lord of the Rings film in which Gandalf assures Pippin that death is not the end, but rather another path we must take. The journey doesn't end here. Death is just another path, one that we all must take. The gray rain curtain of this world rolls back and all turns to silver grass. And then you see it.
"The journey doesn't end here. Death is just another path, one that we all must take. The gray rain curtain of this world rolls back and all turns to silver glass. And then you see it." "What, Gandalf? See what?" Pippin asked anxiously. "White shores and beyond, a far green country under a swift sunrise."
Shortly after Mallory died, her sister reflected that although she never saw the lush green of New Zealand, Mallory's journey had taken her somewhere even better. Likewise, the journey of those left behind continues. Families lives are forever changed after a child dies. And our lives are never the same either. Each patient we care for can teach us lessons about how to live well even when you die young.
The privilege is great and the responsibility that comes with it greater. Delivering devastating news to beloved patients and their families may be the most dark and difficult moments of one's career. But compared with the burden that families carry, it is light. And if you stay long enough and you listen hard enough, you may see the blinding love shining through the darkness.
Now the end of the day. After the noise and activity fade, I find myself thinking of Mallory. Some days, it's with a renewed awareness of the heavy burden we carry. Other days, it's with a lightness of being and gratitude for those who go before us leaving their courage as testament to what they've believed in. The silence unearths a deep ache in my heart. Sometimes I cry. Then I hear the comforting sound of sweeping in the hall. I take a deep breath and walk out the door.
Welcome to Cancer Story, The Art of Oncology series podcast brought to you by the Journal of Clinical Oncology. I'm Lidia Schapira, editorial consultant for Art of Oncology and your host for this program. With me today is Dr. Andrea Watson, a general pediatric hematologist oncologist working at Essentia Health in the Duluth Clinic in Minnesota and the author of The Bomb published ahead of print, February 11, 2019. Andrea, welcome to our program.
Thank you, Lidia. It's a pleasure to be here. I've been looking forward to it.
That's terrific. Let me start by asking you a question I ask many of our authors. People who write usually like to read. What are you reading now?
Oh, that's a great question. I, on any given day, I do read quite a few children's stories. Not only am I a pediatric oncologist, I have five children. So there's a lot of bedtime story reading, which also cuts into my leisure reading. I don't have a lot of time for fiction. But right now, I am reading a book called Invitation to Love, which is by a Cistercian monk about centering prayer. And I'm in the middle of a series that he has written about the topic. And it's wonderful.
That's so interesting. So with that, let's talk about your writing. You have written and published before. So tell me a little bit about how you write and when you write and why you write.
Yeah, thank you. I have discovered writing in my career in the past few years, although I recall my grandmother giving me a journal when I was 12 or 13. And it was called The View From my Window. And I really have been journaling on and off throughout my life since that time. And it wasn't until I experienced a series of patient deaths that were all very close and difficult for me three or four years ago that I really took to writing as more than just journaling.
And I would say looking back, it really felt like more of a compulsion than anything else. After one of the deaths, a few weeks had gone by. And I just-- I felt physically drawn to it, almost I had to get this out. And I just-- I started on my computer. And from that came the essay that you were kind enough to publish a few years ago called Let It Be Hard.
And that was just such an incredibly rewarding experience for me, not only in the process of writing and processing these deaths and all of the events surrounding it, but also in the aftermath in connecting with others who had read it or who were also writers or who had a similar experience. It was a very rich, rewarding experience.
And subsequently, I have come back to that kind of as needed. I had another very difficult patient death last year. And she has become the topic of this essay, which was very much more raw and intimate for me. But that's-- I guess that's where I am in my career. It's been 10 years now that I've been practicing in a smaller town in northern Minnesota. And this has been a really important way for me to stay balanced and keep coming back to work every day.
That's so interesting. And I really appreciate how you take readers also to a place of deep, deep emotion. I remember in the first essay you published, you talked about how difficult the work is. And you also said, and I wouldn't want to be doing anything else.
And in this particular piece, The Bomb, you walk us through the process of delivering incredibly terrible news. And you do it with such sensitivity. Tell us a little bit more about this, the reservoir of emotion and how you handle it, how you keep it from bubbling over.
Well, that is the question. And luckily for me, writing is part of the answer. In this essay, The Bomb, I think I really was looking to dive into that time where you as a provider, as an oncologist, are aware of information but have yet to deliver it. And I really hadn't experienced it so intensely before this case, although it happens all the time.
It happens every day as we look at scans or look at the lab reports and then meet with patients. But in this particular instance, this whole essay is about the backstory and the aftermath. But I really wanted to focus on those minutes where it's so dark. And it's so hard. And it's so heart-- gut-wrenching and heart-wrenching to carry that without being able to share it or get rid of it or change it.
And for me physically, I wanted to paint that scene to try to bring people to what it feels like and physically walking from one building to the next and how everything around you is life as normal-- life as usual. The janitor is sweeping and cars are passing by. But in fact, it's this horrendous bomb that you are delivering.
And then the incredible grace that comes after, I mean, for me writing really is a meditation and a way to honor these children, these families, and their strength and their resiliency. And I think without taking that time away, that time apart, to look at that and to tell that story, you don't really appreciate it. I don't. And when I am able to do that, that turns all the intense sorrow and grief and just the horror of it all into something quite beautiful.
And I think many of your guests have alluded to that in oncology. Whether it's adults or children, there's such great suffering but so much life and growth and love that comes out of that that that's what I think is just an amazing aspect of what we do. And that's certainly what keeps me coming back every day and picking up a new patient and kind of moving through it again because there's no end.
So you have brought up so many very deep and insightful, wise pearls there. I think this idea of connecting through love and beauty and that is sort of almost like the antidote to the sorrow. It's beautiful. But I want to take you back a little bit to this idea that you are holding this bad news, this bomb, because delivering the bomb sounds so dramatic and so explosive. Is that, in fact, the way that you experience this delivery of bad news?
Well, it certainly is a dramatization of it. I wouldn't say that every day, I feel like I'm running across the field with a bomb. But when I was first drafting this essay, and I went to save it, that title just-- I said-- it just came-- it's The Bomb. That's what I'll call it. And in that case, because we had such a strong relationship, and it was just-- it felt so tragic in part because she was such a special girl and so, so just wise beyond her years and this wonderful family.
She was also the age of one of my children, my oldest daughter. And that, as many of us in pediatric oncology at least know, that makes the-- it turns up the intensity. And it's a much more emotionally challenging situation. So that particular news delivery I think was probably the most poignant for me, the most difficult. And it happened as I describe it. But that's not what every day is like thankfully.
No, I-- thankfully not. But what I want to bring us back because you say that the bomb is really the way it felt to you. And then you also talk about the fact that, I mean, one of the things that I loved about this essay so much is you talk about starting to walk towards the room and then having to go back to your office and close the door and sob and feeling empty.
Because I do think that the emotional impact is huge on us as well as you describe as the oncologists here. And then of course, you pull yourself together in the most professional way to deliver this therapeutically. But it is important to remember that it is emotionally a very dramatic. And it feels that way. And you certainly have made that so beautifully clear to the readers.
Thank you. I think one of the things I learned from the first piece I wrote, Let It Be Hard, was just that. And that was something that one of my palliative care idols said to me one day when I was struggling with this case. He said, let it-- it is hard. Let it be hard. And that I think is what got me to where I am now with the story about Mallory and that I learned from him it's OK to shut the door and cry. And it's OK if those cries are sobs.
Now we can't function on a daily basis if we're emotionally out of control. And that certainly wasn't my-- what I was trying to depict. But that let-down I think and just letting it hurt is moving through it. And from that, I-- that and by the grace of God had the strength to go over and very calmly and peacefully relay this news, which, of course, as often is the case, she already knew and help be a support person as the family really absorbed the reality that was unfolding.
And that's, for me, all we can do is walk through it. We can't run away. We can't escape it. And it has only made my work and my relationship with these families richer and deeper. And that's another important piece for me. With both of the families, actually, many-- three kids that I talked about in the first one and this one, we maintain a relationship with these families long after the children have died.
And they are part of our healing as much as we are part of theirs and keeping that memory alive and honoring their struggle and what they taught us. So personally, for me to do this difficult, very painful work has been offset by those relationships and the knowledge that you're growing through a very difficult time, the worst time in a family's life, and a hard time in your career. But there is growth. And there is hope. And there is meaning.
And you beautifully did your work as a writer by framing this high-intensity emotional moment against that sound of that gentle sweeping, the man who was cleaning the floor. And you just remind us that there is normalcy all around this chaos and this crisis. But it's a beautiful piece. Thank you so much for sending it in and for sharing your wisdom. I want to thank Dr. Watson and hope you will join me next time for another conversation about The Art of Oncology.

Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "Just Humor Me” by Dr. Stacey Hubay, who is a Medical Oncologist at the Grand River Regional Cancer Center. The essay is followed by an interview with Hubay and host Dr. Lidia Schapira. Dr Hubay share how even though cancer isn't funny, a cancer clinic can sometimes be a surprisingly funny place.

TRANSCRIPT

Narrator: Just Humor Me, by Stacey A. Hubay, MD, MHSc  

Most of the people who read this journal will know the feeling. You are lurking at the back of a school function or perhaps you are making small talk with your dental hygienist when the dreaded question comes up—“So what kind of work do you do?” I usually give a vague answer along the lines of “I work at the hospital” to avoid the more specific response, which is that I am an oncologist. I have found this information to be a surefire conversational grenade, which typically elicits some sort of variation on “wow, that must be so depressing” although one time I did get the response “Great! I’m a lawyer and a hypochondriac, mind if I ask you some questions?” After I recently dodged the question yet again, I found myself wondering why I am so reticent about telling people what I do. While discussing work with strangers in our hard earned free time is something many people wish to avoid, I think for me a significant motive for this urge to hide is that I do not actually find the cancer clinic to be an overwhelmingly depressing place. Admitting this to others who are not engaged in this work can lead to at the very least bafflement and at worst offense to those who believe that laughing while looking after cancer patients is a sign of callousness. I am an oncologist who laughs in my clinic every day.

Of course, the oncology clinic is sometimes a bleak place to work. Cancer has earned its reputation as a fearsome foe, and the patients I see in my clinic are often paying a heavy toll, both physically and emotionally. Many are grappling with their own mortality, and even those with potentially curable cancers face months of challenging treatment and the torture of uncertainty. Yet somehow, perhaps inevitably, the cancer clinic is not just a place of sadness and tears but also a place of hope and laughter.

Although most of us recognize humor and use it to varying degrees, few of us consider it as an academic subject. A few lucky souls in academia have taken on the task of developing theories of humor, which attempt to explain what humor is, what purpose it has, and what social function it serves. Although there are almost as many theories of humor as there are aspiring comedians, most explanations fall into one of three categories: relief theory, superiority theory, and incongruous juxtaposition theory.1 Relief theory holds that people laugh to relieve psychological tension caused by fear or nervousness. I suspect this is the most common type of humor seen in a cancer clinic given the weight of fear and nervousness in such a fraught environment. The second category, people being what we are, asserts that sometimes we laugh out of a feeling of superiority to others. It goes without saying that this sort of humor has no place in the clinician patient interaction. Finally, we laugh at absurdity, or as Kant put it, at “the sudden transformation of a strained expectation into nothing.”2 This last category is also surprisingly fruitful in the oncology setting.

Laughter in the cancer clinic is still to some extent considered taboo. Near the start of my oncology training, I remember laughing until my stomach hurt with my attending staff in the clinic workspace between seeing patients. What we were laughing about escapes me now, but what I do clearly recall is an administrator in a buttoned-up suit striding over to us in high dudgeon. “Don’t you people realize this is a cancer clinic?” she admonished us. “This is not a place for laughter!,” she added before striding off, no doubt to a management meeting or some other place where the policy on laughter is more liberal. At this point, my attending and I looked at each other for a beat and then burst into helpless gales of laughter. We do not tend to think all that much about why we are laughing at something, but looking back now, I think at least part of the reason was the absurdity of a person so unfamiliar with the culture of the cancer clinic presuming that physicians and nurses somehow park their sense of humor when they arrive at work and turn into a herd of gloomy Eeyores. 

We oncologists are starting to come clean about the fact that we laugh in the clinic and there is now a modest amount of work in the medical literature addressing the use of humor in oncology. One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis.3 If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it? 

Sometimes, it is the patient or their family member who introduces an element of humor into an interaction as on one occasion when my patient was filling out a pain survey which included a diagram of the body on which he was asked to circle any areas where he was having pain. As his wife ran through a detailed list of his bowel habits over the past few days, the patient circled the gluteal area on the diagram he was holding, pointed to his wife and said “I’ve been suffering from a pain in my ass doctor.” His wife looked at him pointedly for a moment before the two of them started laughing and I joined in. 

Sometimes, a patient’s use of humor serves to level the playing field. Patients with Cancer are vulnerable, and the physician is an authority figure, meting out judgments from on high. My patient from a few years ago was having none of that. I met him when he was referred to me with widely metastatic lung cancer, a diagnosis typically associated with a dismal prognosis. The patient, however, was not buying into any of the usual gloom and doom that is customary for these interactions. As his daughter translated the information I was providing, he tilted his chin down, fixed his gaze on me, and proceeded to smile at me in a disarmingly friendly way while simultaneously waggling his generous eyebrows up and down throughout the interview. Over the course of 45 min, I became increasingly disconcerted by his behavior until eventually, I was unable to finish a sentence without sputtering with laughter. If you think you would have done better, then you have clearly never been on the losing end of a staring contest. By the end of the interview, all three of us had happily abandoned any hope of behaving with more decorum. Laughter and the use of humor require a certain letting down of one’s guard, and the fact that all three of us were able to laugh together in this interview took me down from any pedestal onto which I might have inadvertently clambered. One study from the Netherlands noted that patients used humor to broach difficult topics and downplay challenges they faced and concluded that “Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. 

If applied appropriately, adding shared laughter may help optimize shared decision-making.”4 Although it could be a coincidence, it is worth noting that several years after meeting this patient, I discharged him from my practice because he had somehow been cured of lung cancer. Perhaps laughter really is the best medicine. 

On other occasions, it might be the physician who takes the plunge and uses humor during a clinical encounter. The same Dutch study by Buiting et al noted that 97% of all specialists used humor in their interactions and all reported laughing during consultations at least occasionally.

One of my colleagues, a generally serious sort whose smiles in clinic are as rare as a total eclipse albeit not as predictable, managed to win over his patient with a rare outburst of humor. During their first meeting, the patient listed off the numerous ailments he had experienced in the past including his fourth bout with cancer which had prompted this appointment.

As he finished reciting his epic medical history, my colleague looked at him somberly over the rim of his glasses for a moment and asked “Sir, I must ask—who on earth did you piss off?” The patient was so tickled by this interaction that he recounted it to me when I saw him a few weeks later while filling in for my colleague.

Although humor is a powerful tool in the clinic, it is of course not something that comes naturally to all of us. Attempts at humor by a clinician at the wrong time or with the wrong patient do not just fall flat but can even be damaging to the physician-patient relationship. Even if a physician uses humor with the best of intentions, there is always the possibility that they will be perceived by the patient as making light of their situation. As Proyer and Rodden5 point out, tact is essential and humor and laughter are not always enjoyable to all people, or to borrow a phrase frequently used by one of my patients, “about as welcome as a fart in a spacesuit.” Socalled gelotophobes have a heightened fear of being laughed at, and with them, humor and especially laughter must be wielded with great care if at all. All I can say in response to the legitimate concern about the use of humor being misconstrued is that as with any other powerful tool physicians learn to use, one improves with time. As far as PubMed knows, there are no courses in medical faculties devoted to the fine art of the pun or the knock-knock joke. But even if we physicians cannot all reliably be funny on command, perhaps there is something to be said for occasionally being a little less self-serious.

One must also be mindful of patients with whom one is not directly interacting—to a patient who has just received bad news, overhearing the sound of laughter in the clinic corridor has the potential to come across as insensitive.

Moments of levity are therefore best confined to a private space such as the examination room in which physicians and patients can indulge in anything from a giggle to a guffaw without running the risk of distressing others.

The final reason I submit in support of laughing in a cancer clinic is admittedly a selfish one. While humor has been shown to have the potential to reduce burnout,6 the real reason I laugh with patients in my clinic is because it brings me joy.

The people at parties who think my job must be depressing are not entirely wrong. I have noticed that when I have a positive interaction with a patient based on humor or laugh with a colleague about something during a meeting, I feel better. Surprise! As it turns out, this is not just an anecdotal observation. In 2022, a study was published whose title was “Adaptive and maladaptive humor styles are closely associated with burnout and professional fulfillment in members of the Society of Gynecologic Oncology.”7 The SGO has not to my knowledge been widely recognized up to this point for their sense of humor, but I have a feeling that might change.

Humor is an essential part of the way I approach many situations, and given that I spend the majority of my waking hours at work, it is neither possible nor I would argue desirable for me to leave that part of myself at the entrance to the cancer center. So to the administrator who admonished my mentor and me to cease and desist laughing in the cancer clinic, I respectfully decline. My patients, my colleagues, and I will continue to laugh together at any opportunity we get. Joy in one’s work is the ultimate defense against burnout, and I for one intend to take full advantage of it. 

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Stacey Hubay, Medical Oncologist at the Grand River Regional Cancer Center. In this episode, we will be discussing her Art of Oncology article, “Just Humor Me.” 

Our guest disclosures will be linked in the transcript.  

Stacey, welcome to our podcast, and thank you for joining us.

Dr. Stacey Hubay: Thank you for having me. It's a pleasure to be here. 

Dr. Lidia Schapira: It is our pleasure. So let's start by chatting a little bit about what humor means to you and what led you to write this piece and share it with your colleagues. 

Dr. Stacey Hubay: I didn't realize how important humor was to me until recently. I just finished a Masters in Bioethics, which was 20 years in the making, and this was the first time I'd been writing anything that wasn't a case report for many, many years. And there was actually specifically a course called “Writing in Bioethics,” and this was the first thing that came to my mind. And I realized sort of how much humor there is in my day to day work life, which, because none of the other people in this bioethics class of 10 or 14 people were working in oncology, they were surprised. So I thought it would be interesting to write about that. And then when I started thinking about it, I realized how integral it is to most of, I guess not just my practice life, but the way I deal with life. And then I could see a thread going back all the way to the beginning of my practice in oncology, and I'm like, “I should write about this.” And I don't think it's unique to me either. I think it's probably many of us in this field.

Dr. Lidia Schapira: It is. So let's talk a little bit about humor in the practice of such a serious specialty as we tend to think, or people tend to think of, as in oncology. You talk about humor also connecting you with joy and practice, can you tell us a little bit more about that?

Dr. Stacey Hubay: I'm just as surprised, probably as anybody, at least when I first went into this field, which is now more than 20 years ago, how much happiness I found in the field. I meant what I said in the beginning of this essay. When I run into people or strangers, you're getting your hair cut or you're at your kid's volleyball practice, and people always say, “Oh, so what do you do?” And I always say, “I'm in healthcare.” And if they start drilling down, eventually I have to admit what I do. And I say, “I'm an oncologist.” And immediately the long faces and people say, “That must be so terrible.” And I'm like, “Well, it can be, but it's not as bad as you might think.” And they're like, “Oh, it must be very difficult.” And I know that avenue of conversation is closed once or twice. I think I did try saying, “You know what? I have a surprising amount of fun in my clinic with my patients.” And they were aghast, I think is the word I would use. And it made me realize sort of what a taboo it is for many people, including maybe some of us in the field, to admit that we sometimes enjoy ourselves with our patients in our clinics.

Dr. Lidia Schapira: So let's talk about that. Let's talk about joy, and then from there to laugh. I think the reason why laughter seems sort of stranger than joy is laughter assumes that we see some levity, humor. And some people would say, there's really nothing funny about having humor. And yet you seem to see it and find it and share it with your patients. So take us into your exam rooms and tell us a little bit more about your process.

Dr. Stacey Hubay: It's funny, when I think about the humor in my clinics, I don't see myself as the one who's necessarily sort of starting it, although maybe sometimes I do. I think perhaps it's just that I'm more open to it. And I think it's frequently the patients who bring it in with them. Obviously, we know patients in the oncology clinic, they're often very nervous. It's a very anxious time for them. And we are in a position of power compared to our patients, they're very vulnerable. And so sometimes the patient makes a joke, sometimes I wonder if it's a way of testing if that kind of relationship will work with you. They're kind of testing you to see if you will respond to that. And it's also a way of them relieving their own anxiety, because one of the theories about humor is just a way of alleviating tension. It makes sense that oncology is a place where humor would be welcome, because it's one of the most tense places, I think, in medical practice, although I'm not sure it's present in other places like at the ICU. 

So the patient often brings it in, and then you respond to it, and if you're on the same wavelength, it sort of immediately establishes this kind of trust between you and the patient. It's not something you can do with everybody. Sometimes some people will not be open to that at any time. And some patients, you have to get to know them quite a bit before that starts to come into the mix. But I find with most people, if you follow them for long enough and you have a good working, therapeutic relationship with them, just like you would the people you like, your friends, your family, that comes into a relationship almost unavoidably. And I used to think, “Oh, I'm not supposed to do that,” when I first came into practice. I'm a serious oncologist, which I am, and I can be a serious oncologist. And I also just didn't have the bandwidth for it. I think I was so kind of focused on, I have to know what I'm doing. Early in my practice, I didn't have the mental energy to devote to that. And then as that part became easier, I became kind of more open, I think, to that, coming into the interactions with my patients. And over time, I started realizing that was probably what I enjoyed the most about my working day. At the end of the day, I'd come home and tell stories, and my kids would be like, “It sounds like you have fun at work.” And I go, “You know? I really do. Surprisingly I do.”

Dr. Lidia Schapira: That's so very cool. I think there's so much wisdom in what you just told us, which is that at the beginning, especially when in the first few years of your practice, you really are so focused on being clinically competent that you may be just very nervous about trying anything. And then as you relax, you actually say in your essay that for some people, this may bring relief and may level the playing field. So if there is an opportunity and you're loose enough to find it, you may be able to keep that conversation going. It made me wonder, I don't know if you've had any experience yourself as a patient or accompanying a family member as a caregiver to a medical visit. Have you used humor when you are the patient or when you're accompanying the patient? 

Dr. Stacey Hubay: That's an interesting question. I haven't been a patient apart from my routine family medicine visits for quite a long time. But when I was much younger, I was a teenager, I did have that experience. I was maybe 15 or 16. I had some parathyroid issues. And I remember seeing these specialists in Toronto, and they were very serious people. I remember thinking, if I want to become a physician, because it was at the back of my mind at that time, I'm going to be a lot more fun than these people. I'm going to enjoy myself a lot more. And little did I realize how difficult that actually was at the time. But I found them kind of very serious and a little bit intimidating as a 15-year-old kid. I hadn't reflected on that before. I'm not sure if that's something that I'm deliberately pushing back against. I think now if I see a physician as a patient, I probably am much more willing to bring that in if the physician is open to it. But you can usually tell many physicians, you meet them and you're like, “You're not going to even try that kind of thing.” But if they're open to it, I think it would bring me much more fun as a patient as well. 

Dr. Lidia Schapira: Yeah. Do you teach your students or trainees or members of your team to use humor?

Dr. Stacey Hubay: That's a very interesting question. How do you do that? So I mentioned, I just finished this Masters of Bioethics, and one of the excellent courses in it was how to teach bioethics, which really was a course about how to teach anything. And most of us who are in medicine, we've spent a lot of time teaching without being taught how to teach. In my own practice of teaching, we mostly use one on one with people coming into our clinics and seeing patients with us. And I think mostly some of it's through observation. I will say to people who work with me that we all have to find our own style. It's important, no matter what your style is, to try and connect with patients, because you're trying to create a therapeutic alliance. You're on the same side. The way that works for me is you don't laugh with people you don't trust. When you're trying to make a plan with people in these difficult situations, I think if you've already formed this alliance where they realize you're with them, they're more likely to believe you and trust your recommendations. I tell trainees, I'd say, “This is my way of doing it. And if it works for you, that's wonderful.” But I can see that for some people it's difficult. 

Although even the most serious clinicians, one of my very good friends and colleagues who I mentioned in my essay and I talked about, he doesn't make a lot of jokes with his patients, which is perfectly reasonable, but the occasional time he does, the patients were so struck by it because they knew him as such a serious person. They bring it up, “Remember that time my doctor said this,” and they thought it was a wonderful thing. So it's difficult to teach. It's just how would the Marx Brothers teach someone else to be the Marx Brothers? It can't be done. Only the Marx Brothers are the Marx Brothers. Not that I'm comparing myself to the Marx Brothers by any means, but I think you find your own style. Maybe what I'd like to show trainees who come through with me is that it's okay to enjoy the patients, even in a very serious discussion.

Dr. Lidia Schapira: Yeah, I would almost say that it speaks to the fact that you're very comfortable with your clinical persona in that you can allow yourself to be totally human with them. And if human means that you can both sort of align around seeing some humor or cracking a joke, that is perfectly fine. I have a question for you, and that is that a lot of my patients in my practice, and maybe some of our other listeners come from completely different cultural backgrounds, and many don't speak the same language as I do. So for me, thinking about humor in those situations is impossible just because I just don't even know what we can both accept as funny. And I don't want to be misunderstood. Tell me a little bit about how to think of humor in those situations.

Dr. Stacey Hubay: That's a good point you make. It makes me think about how when I read Shakespeare's plays, we all think his tragedies are fantastic. And when I read his comedies, I'm like, “This isn't very funny.” Or if even when you watch sort of silent movies from the 1920s, I'm like, “Did people really laugh at this?” So you're right. Humor is very much of its time and place and its culture. And even people from the same time and place might not share the same sense of humor. That being said, somehow it still works with the people who are open to it. Somehow it's not necessary, because you've made a very witty joke, or vice versa, that we all understood all its complexities. It's more the sense that we're laughing together.  

And I talk about a gentleman that I met in my practice in this essay, and he didn't speak English, so his daughter was translating for us. And nobody was making any kind of verbal jokes or humor. And this was the first time I was meeting him in consultation, and he just kept making funny faces at me the whole time I was talking, and I didn't know what to do. I was completely bamboozled by this interaction. And it actually ended up being sort of one of the funniest visits I'd had with a patient. By the end of it, I could barely get a sentence out. And I thought, this is absurd. This is a very serious situation. This poor gentleman has stage 4 lung cancer, brain metastasis, but he just wouldn't let me be serious. So I think that humor can transcend cultural, linguistic boundaries amazingly enough. Again, if the person was open to it, this person was almost determined that he was going to make me laugh. It was like he'd set out that by the end of his visit, he was going to make sure that we were having a good time. And I was just, “I'm helpless against this. We're going to have a good time.” I remember coming out of the room, the nurses I was working with, they're like, “What was going on in that room? Is he doing well?”I'm like, “Well, in a way, yes, he is doing well.”  

At the end of this visit, we were all in a very good mood. But I'll sometimes use sign language, or I'll make some stab at French or whatever it is that the patient speaks, and then they just laugh at me, which is also fine, because they can kind of see that you've made yourself vulnerable by saying, “You know, it's okay if I can't speak your language.” And they just smile and laugh with me. So it's not that it's a joke so much, it's more that they just feel comfortable with you. But you're right, it is more challenging. It's something I wouldn't usually do in such a situation unless I had gotten to know the patient, their family, reasonably well. 

Dr. Lidia Schapira: Let's talk for a moment about wellness and joy in practice. What gives you the greatest joy in practice? 

Dr. Stacey Hubay: Undoubtedly the people that I see and I work with. When you go into medicine and you train, we all train in academic settings. And I had excellent mentors and academic mentors, and the expectation, because you're trained by people who are good at that kind of work and succeeded, is that you might want to pursue that, too. And it took me a while to realize that that's not where I get most of my joy. I like being involved with research and I appreciate that people are doing that work and I love applying that knowledge to my practice. But I get my joy out of actually seeing patients. That wasn't modeled a lot necessarily to us in the academic setting. It's taken me quite a long time to realize that it's okay to lean into that. If that's what I like about my practice and that's what I can bring to the interaction, then that's what I'm going to do. And I started looking back, it would have been nice to realize, it's okay. It's okay to be a clinician who really enjoys seeing patients and wants to do a lot of that. Again, different kinds of people become physicians, but a lot of the people we had as mentors, they had chosen academic careers because, not that they didn't like patients, they often did, but they really wanted to pursue the research aspect of it. And they would try to cut down on their clinical work and say, “It's nice if you don't have two clinics, you can focus on the research.” And I think to myself, but I like doing the clinics and I like seeing the patients, and it would be a shame to me if I didn't have that. 

It's not just the patients, but my colleagues as well, who are also great fun to have around, the nurses we work with. Really, it's the interactions with people. Of course, we get joy from all kinds of other things. In oncology, it's good to see patients do well. It's wonderful to apply new knowledge and you have a breakthrough coming from immunotherapy to lung cancer, melanoma. That sort of thing is fantastic, and it gives me joy, too. But I have the feeling that when I retire at the end of my career, I'm going to look back and go, “Remember that interaction with that patient?” Even now, when I think of when I started in clinical settings as a medical student, I remember, I think it was my first or second patient, I was assigned to look after an elderly woman. She had a history of cirrhosis, and she was admitted with hepatic encephalopathy and a fractured humerus after a fall. I didn't know what I was doing at all, but I was rounding every day. And I went to see her on the third day, she was usually confused, and I said, “How are you doing?” She looked at her arm and she said, “Well, they call this bone the humerus, but I don't see anything particularly funny about it.” I thought, “Oh, she's better.”

That's actually one of the earliest things I remember about seeing patients.  

Or the next year when I didn't realize I was going to pursue oncology. And I was rotating through with an excellent oncologist, Dr. Ellen Warner at Sunnybrook, who does breast cancer. We were debriefing after the clinic, and she said, “Someday, Stacey, I'm going to publish a big book of breast cancer humor.” And I thought, “I wonder what would be in that book.” And that's when I got this inkling that maybe oncology had just as much humor in as every other part of medicine. And that proved to be true. 

Dr. Lidia Schapira: What was it, Stacey, that led you to bioethics? Tell us what you learned from your bioethics work.

Dr. Stacey Hubay: I think it's because basically I’m a person who leads towards the humanities, and for me, bioethics is the application of philosophy and moral ethics to a clinical situation. And I think medicine, thankfully, has room for all kinds of people. Of course, you have to be good at different things to be a physician. But I always imagined myself, when I went to school, that after a class, you'd sit around a pub drinking beer and discuss the great meaning of life. And I thought, this is my chance to pursue that. And I was hoping to kind of– I didn't think of it as that I was going to this because I was interested in humor and joy in oncology, although I obviously am. I was thinking that I would be able to make a difference in terms of resource allocation and priority setting, and I still want to pursue those things. Things often lead you down a side road. And bioethics, for me, has sort of reminded me of what I like about this work. And because I was surrounded by many people who are not doing that kind of work, who were surprised how much I liked it, it made me think very carefully about what is it that I like about this. So the bioethics degree, it's finally allowed me to be that person who sits around in pubs drinking beer, discussing Immanual Kant and Utilitarianism and whatever moral theory is of flavor that particular day.

Dr. Lidia Schapira: What led you to write this particular story and put it in front of your medical oncology colleagues? Is it your wish to sort of let people sort of loosen up and be their authentic selves and find more joy in the clinic?

Dr. Stacey Hubay: That’s a good question! The most immediate impetus was I had an assignment for my degree, and I thought, I have to write something. But I'd been writing down these sort of snippets of things I found funny. Occasionally, I just write them down because they were interesting to me. And because we often relate stories to people, “What did you do today? What was your day like?” And because you tell these stories over and over, they develop some kind of oral, mythical quality. You're like, “Here's what I remember that was funny that happened, and it might have been many years ago now.” And I think I'd been thinking a long time about writing it down and sort of organizing it that way. And I guess having to produce something as part of this degree program was an impetus for me. But I'd always wanted to do it. And I think the main thing was I wanted to make it clear to myself what it is I like about it. It's actually made it, for me, much more clear. It was sort of a nebulous thing that I like my work and what is it like about it. And this is what I like. I like the joy I get from patient interactions. And then a secondary goal is I hope that other people, if they were to read this, they realize it's okay for us to have joy in our work as oncologists. And there is a lot of doom and gloom in the world and in our practices, but there's always, always a chink that lets the light in, there's always some humor in what we do. And so I hope that if other people can find that, too, that they enjoy their practice and they last a long time and ultimately help patients through this difficult journey.

Dr. Lidia Schapira: Are you somebody who likes to read stories? And if so, what stories have you read recently that you want to recommend to our listeners?

Dr. Stacey Hubay: Oh, I am reading The Master and Margarita because three different people recommended this novel to me over the last three years. When a third person did, I thought, “That's it. Got to read it.” It's a Russian novel from the 1930s that was banned until, I think, the ‘60s or ‘70s. It's like a satire of Russian society in the ‘30s. And actually, what I like about it, I haven't finished it. I'm a third of the way through, as I think it's one of the so-called classic novels, people tell me, but that's funny. A lot of the classic novels are kind of tragedies or romances, and this one is sort of absurd black humor in the face of a difficult situation, which I guess is related to oncology, again. So this sort of oppressive, difficult society, the 1930s and Soviet Union, how do you deal with that? With humor. So I'm quite enjoying it, actually. So I recommend that one. 

Dr. Lidia Schapira: Well, you're an amazing storyteller, and I really enjoyed our conversation. Is there any final message that you want to convey to our listeners?

Dr. Stacey Hubay: If you have a chance to become an oncologist, you should do it. It's just the best career I can imagine.

Dr. Lidia Schapira: Well, with your laughter and with that wonderful wisdom, let me say, until next time, to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: Dr. Stacey Hubay is a Medical Oncologist at the Grand River Regional Cancer Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Being on The Other Side; An Oncologist’s Perspective on Grieving,” by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined.

TRANSCRIPT

Narrator: Being on the Other Side: An Oncologist’s Perspective on Grieving, by Shannon MacDonald, MD (10.1200/JCO.22.01363)

As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept.

Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study.

It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us.

In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night.

Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes.

Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life.

Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me “are you sitting down?” So, I kneeled on my yoga mat. I can’t recall how many synonyms for death he attempted before he was forced to say the word “dead” to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said “Dan is dead” and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own.

I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan’s place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, “Shannon, you cried softly and sighed all day long.” When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep.

After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, “I feel so guilty too.” For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death.

With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as “moving on” and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned.

Eventually, I reached that place that Didion described: “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say “I” instead of “we.” I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him.

Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan’s return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a coworker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional.

I learned to answer the “how are you” question by replying okay, as I could not lie and say “well.” When my nephew died, I texted my sister daily “How are you on a scale of 1- 10?” She loved this. People said perhaps well intended but strange things, such as “don’t worry. You are young and will marry again.” and “you are lucky you did not have children and you will be a mother to somebody else’s children.” With these comments I heard, “Dan is replaceable” and “it is good thing that you don’t have a piece of him in a child you shared.” I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself.

Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care.

You can find all ASCO shows including this one at podcast.asco.org. I'm your host, Dr. Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

Today, we are joined by Dr. Shannon McDonald who's an associate professor at Harvard Medical School and a radiation oncologist at the Massachusetts General Hospital, and Mass General Brigham in Boston.

In this episode, we will be discussing her Art of Oncology article; “Being On The Other Side: An Oncologist Perspective On Grieving”.

At the time of this recording, our guest has no disclosures.
Shannon, welcome to our podcast and thank you for joining us.

Dr. Shannon MacDonald: Lidia, thank you so much for having me. It's a pleasure and privilege to be here today.

Dr. Lidia Schapira: I'd love to start by having you tell us a little bit about what motivated you to write this essay that is so personal and so important, and to share it with the large community of oncologists.

Dr. Shannon MacDonald: So, writing it was easy. I found it very cathartic to write about my experience. So, the act of writing it, I did over many years.

I started it soon after Dan died, picked it up a couple of years later, and then put it away for a long time, and recently was motivated to pick it up and start writing again based on reading “Beautiful Boy”, which was one of the Art of Oncology pieces and also, based on another medical narrative that I wrote just before this one.

And the decision to publish it and make it public was a little more challenging. Dan was a very private person. We spent many years being very private about his medical problems. He never wanted to be seen as having a disability or a medical issue.

I think he was wise enough to know he'd be perceived differently, but I made a decision when I gave his eulogy to share some of his medical history and how brave I think he was during that time.
And I think one of the reasons to publish it was to help others. I found reading very helpful when I went through this experience and I think helpful in my career as an oncologist, and reading people's stories, short stories, books, any type of reading about the human experience is helpful to try sort of put yourself in those shoes and try to understand what it feels like.

And I was also motivated by giving a few talks or joining others to give talks on grief during the pandemic and speaking about my experience and was told by colleagues a long time ago,’ we just want to know how it feels’.

And when I gave these talks, I think residents in particular, but also, colleagues of any age were very grateful for the sharing of my experience. And it made me feel sharing this was meaningful.

Dr. Lidia Schapira: And when you talk about how it feels, the sentiment I took away from reading the essay, and I've read it many times, is how raw that felt.

And your wisdom in saying that you had lived as a professional in a culture that's immersed in grief, and you were exposed to suffering, and the suffering of children even, every day in your professional life, and yet you were unprepared.

Can you talk a little bit about what you felt helped you to learn to accept and move on or live with Dan's absence?

Dr. Shannon MacDonald: Yeah, so I think what you said about being totally unprepared and what I said in my essay was completely true. I guess, I thought somehow that seeing patients suffer, seeing them lose loved ones, seeing parents lose children would have somehow made me more prepared, but it did not at all, I was completely caught off-guard.

And I remember calling a colleague who was also 40 and she lost her husband suddenly, about three months after I lost Dan. And one of the first things she cried out when I called her is, “I can't believe I had no idea what this felt like.”

And I think that that resonated with me, I felt exactly the same way, and that's what I answered back to her. And as much as we live it and see it every day, it's so different being on the other side of it.

I think we see the illness, the sadness, and you think of it for moments. You can't think of it every moment of every day. And I remember hearing people say that person that I lost is in my mind every moment of every day, and I couldn't understand that, but it's true.

Somehow, it's constantly there. Even though Dan was gone, he was constantly there, and to do anything meant sort of pushing him out of my mind in order to do another task. And that part is the part that I think is unimaginable. And why would you want to imagine that, and how could anyone? And that is the part that we don't see.

And I think as oncologists, we see our patients through a tremendous amount of suffering. We see them at the time of death of a loved one, and then we see them shortly after, but we don't always see them in the weeks, months, years after that loss.

So, it was that part that was so unknown to me until that happened. And I think you do what you can to get through it. It's not easy, it's messy, and it's hard. And I can't say that I could give someone advice on how to get through it in a better way. I think you just have to go through it. And that was yeah, the experience I learned from my loss.

Dr. Lidia Schapira: So, you say that it's messy and complicated, and in your essay, you reflect also on the reaction that you had or the way that your colleagues responded to this catastrophe that took you by surprise.

It was not as if Dan had a chronic illness and was approaching the end, this was totally unexpected despite the fact that he did have an illness. And you talk about the silence of your colleagues as a wound. At least that's the way I interpret it. Can you talk a little bit about that?

Dr. Shannon MacDonald: Yeah, and it's silence of colleagues and also friends. But I think for me anyway, I can only speak about my personal experience — that was the hardest because it created this awkwardness that was hard to get past.

So, in my opinion, it's better to say anything or write something if you can't say something. But also, I also have learned, and I understand that it's just so hard and people are so afraid of saying the wrong thing that it's natural to avoid it or to try to say something, and then be too nervous to say something.

But I guess, my advice would be to try to write or say something rather than saying nothing because it's so awkward when nothing is said, and it creates an additional stress on that person that's grieving, and sometimes, a sad loss of a relationship for a time or forever.

Dr. Lidia Schapira: Sounds like you have used your experience to now, talk about and write about your personal grief, and you're seen perhaps, as a resource for others or a teacher. What does that feel like?

Dr. Shannon MacDonald: It feels good. I'd like to be that as much as I can be. Again, it's only my personal experience. I've received feedback that it's helpful, but I'm sure I wouldn't receive feedback that it was unhelpful or negative feedback.

But I think that makes me feel like there's some meaning to the writing and the work that I've done, in speaking to others. And I think there's a lot of oncologists, maybe particularly those new to training that are eager for more teaching in the human experience of what we see every day.

They certainly want to learn the trade and the skills, and they can find that in textbooks and in our teaching, but the humanistic part of it is more difficult to learn.

So, it's been very rewarding to have colleagues and residents tell me that it felt great to be able to ask in a comfortable setting how it feels to have someone die, so that they can understand better how their patients feel.

Dr. Lidia Schapira: Can you reflect a little and share with us some of the sort of milestones in your sort of recalibrating and being able to find joy, and then find a relationship and transform your experience into part of who you are and carry with you, but in a way sort of embrace this new place in your life?

Dr. Shannon MacDonald: So, I'd say a lot of steps forward and steps back. And if anyone had told me I would be as happy as I am again, now, right after Dan died or within the first year after he died, I would've said no way, that's never going to happen.
I'd say in the initial time of his death and months after his death, I had no desire to ever date or be with anyone again. As I mentioned in my essay, it was easier to live in the past than to think about the present in an identity that was no longer what I knew was my identity or the future, was daunting.

And I would say, again, time is different for everyone, but maybe after 10 or 11 months, I could be happy again. I could enjoy friends, I thought I was ready to date. And one of my best friends said, “I don't think you are.” And I said, “I think I am.” And then I wore my wedding ring on the first date I was set up on.

And I thought maybe foolishly, “Oh, I don't think he noticed or he cared. He knew I was widowed” and he did. And we didn't go out on another date. But in time, I learned to date other people and not feel guilty about it or disloyal to Dan.

As I mentioned, I met someone who allowed me to speak of him, which was very important for me that I not lose that past part of my life, and that person could still come forward into new relationships and new friends and family.

I still am very close to my in-laws and keep them as part of my family. And I think that keeping my old identity and what Dan did for me and how he shaped me was very important to me in moving forward.

And I feel that I'm able to do that now, and know that he lives on in the person he made me, and the other people that he shaped in his life that was too short.

Dr. Lidia Schapira: So, the question I'm sure on our listeners’ minds is how has that impacted you in your professional life as a radiation oncologist?

Dr. Shannon MacDonald: It allows me to be probably more empathetic rather than sympathetic. I remember being taught in medical school, in my psychology rotation that you can only truly be empathetic if you've been through something. And it's still similar, everyone's experience is different.

But for some patients, I think it allows a little more empathy. I think in the initial months, years after Dan died, I was too empathetic. I was too sensitive to the losses that other people experienced.

And that made me realize that somehow, maybe I built up some desensitization over time that was very subtle. And after Dan died, I worked hard to build that up again to allow me to work with patients and not be too sad and too empathetic, or too upset by what was happening to them.

And I do think that that has happened again, but it's beautiful to be able to empathize, but hard to empathize too much.

Dr. Lidia Schapira: So, in the last few minutes, Shannon, I'd love to hear your take on the value of narratives, of stories to bring these topics to our discussions in the clinic, to the curriculum of our trainees, and I think create a community of people who really deeply care about our lived experiences and want to support each other.

Dr. Shannon MacDonald: So, I think they're extremely important. I love the narratives. I always look at Art of Oncology and I love the New England Journal of Medicine ‘Perspective’, and JAMA’s ‘Piece of My Mind '.

And I also found books; Joan Didion's, The Year of Magical Thinking, and also, those stories by Emily Rapp Black, The Still Point in the Turning World; When Breath Becomes Air by Paul Kalanithi. I think those are three books that I tell my residents to read and narratives, I think we need more of that in the curriculum for our residents and students. And I do feel like there's a generation that is craving that more.

I don't know if you've seen this in the residents you mentor, but, in ours, I feel that they're asking more and more for that to be part of their curriculum more so than they had a decade ago. And it may be that this generation is just more comfortable speaking about feelings and acknowledging that that's an important part of medicine.

And we want to cure patients. We want to help them live with their cancers for a long time with a good quality of life, and we aim to do that. But the reason we aim to do it is so they can have a human experience. So, that part is so important. It's why we do what we do. And I think that it motivates us to take care of our patients and help them to live as well as they can with their disease.

Dr. Lidia Schapira: And we become part of their stories too. I've often thought that in some ways, if we have a strong relationship with patients, we are invited to co-edit those illness narratives, and what a privilege that is.

Dr. Shannon MacDonald: I agree.

Dr. Lidia Schapira: My last question is; what are you reading now?

Dr. Shannon MacDonald: So, what I would recommend that I've recently read for the Art of Oncology listeners would be Between Two Kingdoms by Suleika Jaouad. I love that book. It's also a great audio book. She narrates it herself and does a beautiful job with that.

I also recently, probably a year ago now, read Sanctuary by Emily Rapp Black, which I thought was very meaningful as well. So, for your readership, those are two books I would recommend.

Dr. Lidia Schapira: Well, Shannon, thank you for an extraordinary essay, for the power of your conversation. And for our listeners, until the next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or a review wherever you listen. Be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology that is just one of ASCO's many podcasts.

You can find all of the shows at podcast.asco.org.

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Additional Reading:
My Beautiful Boy

Bio:
Dr. MacDonald who is an Associate Professor at Harvard Medica School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham in Boston.

Listen to ASCO’s Journal of Clinical Oncology essay, “Playing by Eye: Using Music as a Parallel to Clinical Oncology,” by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. The essay is followed by an interview with Preti and host Dr. Lidia Schapira. Preti discusses the parallels in playing music by ear and clinical oncology encounters.

TRANSCRIPT

Narrator: Playing by Eye: Using Music as a Parallel to Clinical Oncology, by Beatrice Preti, MD 

The Yamaha keyboard in our cancer center is strategically placed. It rests in the center of the tall, lofty atrium, an open space that allows sound to travel and echo, creating an effect one might expect from a concert hall or a large-capacity theater. From their position, keyboard players cannot fully appreciate the music they create. In the middle of the atrium, any sound is flat, shallow, and short-lived. But, further away, and on the upper levels of the center, one can hear the music echo as the walls seem to vibrate with reflected sound. It is enough to pause one’s step to listen, perhaps recalling some half-buried memory or latent emotion a song elicits.

But on center stage, beneath the streetlamp-shaped light that feels all too much like a spotlight, the pressure is on. The keyboard faces half of the waiting room and the lobby Tim Horton’s, which means, as one plays, one can see reactions to the music—including winces when fingers slip! Faces turn solemn and reflective during slower songs; patients, relatives, and health care workers alike dance and clap to faster-paced, popular tunes. Feedback and commentary are steady—about the music, the song choices, and, of course, song requests.

I find song requests challenging; a combination of performance anxiety and only moderate competence on the keyboard affects the quality of the music that can be produced on demand, yet does nothing to eliminate the desire to fulfill a patient’s request. Indeed, the request is usually the simplest part:

Do you know Bette Middler’s “The Rose”?

A simple tune, one of my mother’s favorites. But I haven’t played it in years, since high school, actually, and the once-familiar notes now elude me.

But the empty space after a request lingers awkwardly, and the hopeful anticipation from the patient and their family squeezes my heart like a vise. To break the pressure, I test out a few chords. Dozens of pairs of eyes stare down at me from all over the building. My hands start to seize. To freeze.

Panicking, I hit a note. Seems okay.

Then another one. And a chord.

…that was supposed to be a chord.

The eyes pin me down. I see disappointment. I hear whispers. They must be about me, that it’s not as good as it sounded before, that I could do with some practice. I try again. Better. Another note. A broken chord. An octave. A melody emerges. Someone smiles. I think. Sweat soaks my shirt. Are we at the chorus yet?  How much longer is there left in this song?

Singing starts somewhere to my right, also a little out of tune, and it gives me the courage to continue on, although the experience is nerve-wracking enough to make me dread song requests—despite the apparent joy they bring.

The solution, once considered, seems simple: practice playing by ear. It is impossible to predict who might be walking by on any particular day, but having the skills to reply to a request with at least a few bars of a beloved tune, thus brightening a face (and a day!), seems well worth the effort. Playing by ear, like most learnt skills, is more manageable when broken down into steps. 

The first step (or requirement, really) is a general familiarity with the song and a plan for how to approach it (fast or slow? Block chords or broken? Major or minor key?). Once this is determined, one begins with the first verse. The first time is usually rocky, and the mistakes are obvious. But, with luck, a familiar melody starts to emerge by the chorus.

The music grows louder with confidence, and gauging audience reactions helps musicians see how close they are to the target tune and where they need to adjust. Playing by ear—or, perhaps, playing by eye, as it is the reactions which truly guide the musician—is an amazing skill, one which interestingly spills into more domains than initially anticipated. After several ear-practice sessions, I noticed a strange pattern in my clinics—the steps of a clinic encounter mirrored playing a song by ear! Prior to each encounter, I would consider the diagnosis and treatment plan, as well as a vague approach of how to handle the encounter, given the goal of the visit and the patient’s journey thus far. Once inside the room, however, I began to alter this plan based on the patient’s (and family’s) responses, taking cues both verbally and nonverbally.

Sometimes my words, tone, or gestures fell flat, and redirection was needed. Sometimes an unexpected reaction told me I’d just made a mistake, and I backtracked, trying again, paying closer attention to the reactions to ensure the second try was better. But, gradually, we (usually!) reached a steady state and manage to complete the visit on a strong note.

Naturally, then, the next step would be to practice clinical encounters using these same steps, trying to take my clinical skills to the next level. Unlike a song, however, a clinic visit’s stakes are higher—especially in the high-emotion field of oncology—and striking even a single mistimed chord could lead to disaster.

I start small: awareness, noticing reactions I didn’t before. There’s the fullness in an eye before tears fall, the pallor of a clenched fists’ knuckles, the subtle tremor of a shaking leg. I learn to call them out by name, ask about them: grief, frustration, fear. 

There is a pause, an empty space after such a direct question. A wide-eyed stare. My heart pounds, awaiting the verdict. Was my diagnosis correct? A misjudgment breaks rapport, but accuracy is rewarded with surprise, and opening up. Even family members look surprised, as details are elicited that weren’t before. There is no singing along—cancer is not a beloved showtune. But as my skills grow, I find that not only are patients and families less tense during encounters—but I am, as well. I develop faith in my skills to read the room and alter  my direction based on what I see. And, perhaps, the biggest clue that one has succeeded—on both fronts—is the heartfelt thank you that follows the encounter. 

This parallel has made me realize that every interaction between two people, just like every song, has its own beat. Its own melody. Is this fast or slow? Calm or anxious? Is this a happy exchange, or a sad one? The dynamics of the encounter influence the melody, and a misstep or misplaced word, like a note, can lead to dissonance. However, by listening to the song of the encounter and adjusting as appropriate, an astute individual can actually improve the interaction, maximizing the potential of the encounter, and allowing for a strong conclusion to the visit. It isn’t easy work, to be sure, and, sometimes, the impact of the song can be hard to appreciate, especially within the confines of a four-walled clinic room. However, like the keyboard music in the atrium, the echoes resulting from one clinic encounter have the potential to reach far-reaching corners, echoing in ways previously unimagined, and lingering far longer than when the song ends.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. In this episode, we will be discussing her Art of Oncology article, “Playing by Eye: Using Music as a Parallel to Clinical Oncology.” 

At the time of this recording, our guest has no disclosures. 

Beatrice, welcome to our podcast, and thank you for joining us.

Dr. Beatrice Preti: Thank you, Lidia. It's a pleasure to be here.

Dr. Lidia Schapira: So I usually start by asking our authors to tell me what they're reading, but in your case, I'd love to ask you a little bit about perhaps what you're listening to or your favorite musical pieces.

Dr. Beatrice Preti: Yes, absolutely. Well, I do love music. I play three instruments myself, so I have several YouTube playlists that, as I hear a song, I'll add different ones to. So one of them is retro tunes, like '80s, '70s hits that I know mostly from my parents. And then I have Broadway hits, musical hits because I love musicals and singing. And then I have a random one that has a lot of Taylor Swift, much to the chagrin of my colleagues because I will play that in the cancer center, not around patients, but my colleagues. 

Dr. Lidia Schapira: That's lovely. Well, I think Taylor Swift is a global phenomenon, is all I can tell you. Has music always been a part of your life?

Dr. Beatrice Preti: Yes, very much so. I think- I started piano lessons formally when I was seven. Then I taught myself guitar as a teenager. And then once I hit medical residency, actually, my treat to myself was to start teaching myself violin. And I had the opportunity to take some lessons for a few years as well, which was absolutely lovely. But growing up, my mother loves music as well. She was a Sarah Brightman fan, a British singer. And we used to have her playing and my mother would sing. So I know all of Sarah Brightman's songs from the time I was a very early child, trying to pick those out on the piano as a young child as well.

Dr. Lidia Schapira: So let's talk a little bit about how you bring that wonderful part of your life into your work as a physician and as an oncologist. Do you ever sing with or to patients? Do you talk about your love of music? Do you play music during your consultations? I'm curious all of a sudden.

Dr. Beatrice Preti: Yes, absolutely. So I guess one way that I do bring it in is I have a little violin pin that I wear on the lapel of my white coat. It's a conversation point with many patients because the way I approach oncology is really to try to bring in a human aspect and get to know patients, get to know what they like, who's at home with them, what are their lives like outside the cancer center. And oftentimes people who are musically inclined will point to it, and it's a conversation starter, which can actually be quite relevant when we're talking about treatment decisions and such. And then I have the opportunity as well to play and go down in a cancer center. And, yeah, patients will sing and I will sing along with them as well.

Dr. Lidia Schapira: So you speak of this with so much joy. Tell me a little bit about this piano that I imagine from your description, located in the center of a large atrium in a cancer center, and people just walk by and informally connect with you and they ask you to play, when do you play and how long do you play? When did it start?

Dr. Beatrice Preti: When I started off in oncology, I was extremely shy. I still am. And one of my mentors, a cellist, who plays the cello found out about my musical inclinations and said, "Well, we need to get a piano in the cancer center lobby. Essentially, I can get Beatrice down there and start getting her more comfortable in front of groups, in front of people, in front of patients." That really, I think, was the rationale, but maybe on paper it's more to have something nice for the patients to listen to. And he actually got a piano donated or, sorry, an electric keyboard donated to the cancer center. We did have a piano a number of years ago, but unfortunately it was too loud with the acoustics of the center, so we needed something with volume control. There's actually a lot of keyboard, a lot of black keyboard that's down there now.  

And the first time I played was probably two, two and a half years ago now with my mentor, with the cello. I was very, very nervous. All these people were staring at you and all these people were looking at you. And I actually had a bit of a meltdown just before I thought, "Well, I can't do this. There's no way I can do this." But he coached me through it and it was the first of many things that he coached me through related to oncology, relating to overcoming your fears to try to help other people. And that's really how that started. And eventually I got brave enough to go down and play on my own and chat with the people down there.

Dr. Lidia Schapira: That's a beautiful story, both of service and of mentorship. And to see both of these things come together. As you say, your mentor probably had two things in mind: helping the community of patients that you serve and also helping you build confidence, as you say. So talk a little bit about this confidence and this lovely metaphor, in a way. You talk about finding the right tempo or finding the right music to play to please somebody or to help them relax, bring them joy. And then you draw some parallels to how you use communication in the consultation room, taking your cues from people and knowing perhaps when to slow down or when to change the tone or the voice. Talk a little bit about that. It's fascinating to me.

Dr. Beatrice Preti: Well, I think one of the things I struggle with in oncology, and I certainly know I'm not the only one, is that sometimes you feel very helpless. Because we do have wonderful drugs, we have wonderful therapies, I'm a medical oncologist, so drug therapies, but they don't always work. And sometimes, despite your best efforts, despite the best that medicine has to offer, you feel very helpless, and the outcome is not what you or the patient wants. So trying to find something that you can offer and that you can give, that's more than just a treatment or more than just a drug, that's essentially giving of yourself, what can I, as a person, offer to a patient? And I guess superficially, the music itself is something that you can offer. To give people even just a few moments where they can escape the cancer center and they can listen to something. And when I'm down there, I'll play a lot of these tunes and these kinds of things, where maybe it triggers a memory that somebody might have of a time and place that's quite different than the one they’re in right now. But also, it helps evoke that human aspect that I think we touched earlier.

And as you say, Lidia, and as I say in my piece, about trying to match the tempo, trying to match the rhythm, because conversations also have tempos and rhythms. Human interactions have variations and they have moods. And it's also practice in a way. If you can connect to someone through music, perhaps you can connect to your words as well. Perhaps you can connect with your actions as well. Much the same sort of strategy.

Dr. Lidia Schapira: And you bring up a very important point, I think, and that's to play, as you say, you start by saying ‘by ear’, maybe no, but by eye because basically you're also taking in the visual cues that are coming from your audience. In this particular case, it's you're playing in the lobby, but in a consultation room from the patient and family and everybody who is there, and being very quick to take that into account and to redirect or make a change. And when you talk about that in the music, it's so easy to understand. And when you talk about that in the consultation room, that's such a skill. That's sort of where the art and the skill seem to go together. Can you say a little bit more about that or share with us some time or some anecdote where that really worked for you?

Dr. Beatrice Preti: Honestly, I think the first thing that comes to mind is times when it didn't work. Sometimes, especially as a more junior learner, you only realize that the patient encounter isn't going well when it's really not going well. You really miss those early cues that a patient is telling you. That they're in distress, that they're not happy with what they're hearing. And it was, again with the same mentor observing me through several patient encounters and really deciphering it, saying, “Well, this is where– What did you think when they said this? And did you notice this look?” And no, I didn't notice this look. Well, he did, and maybe you can pay more attention. 

And I think it was actually when I was playing music that I really started to make those connections because down there, I'm playing by eye. I'm trying to watch this patient or this person - half the time, I don't know who they are - to see am I playing the tune that they want, and is it recognizable enough? Does it sound okay? Is it transporting them to that place where they're hoping to be and then bringing that into the clinic room and saying, “Okay, this is actually working. I can look at this person and I can figure out how this is going and try and adjust or redirect to really try and make this encounter the most valuable it can be for them and help them get out from what they need to get out .”

Dr. Lidia Schapira: So Beatrice, what I'm hearing is an enormous sense of commitment to your patients. It's absolutely lovely. But I wonder if I can ask you a little bit about the flip side of that, and that is to reflect a little on perhaps how playing and sharing music reduces your stress or increases your sense of being well and being yourself and being more confident. Can you talk a little bit about that? 

Dr. Beatrice Preti: The bottom line is that when a patient encounter goes well, you also feel better because if it's not going well and people are upset, you will also be upset. So, again, very superficially, that's a good end goal to have.

Dr. Lidia Schapira: That's right. 

Dr. Beatrice Preti: Music itself is very relaxing for me. Maybe when you're a small child and you have to play the exam pieces or you have to play what the teacher says, or what your parents say, it's not quite as much fun trying to learn everything. But now I'm at the point where if I hear a song or I see a song, I'd like to play the song, I can just do it. So it's very lovely that way. Of course, I have all my instruments at home, so even if there's a song that perhaps is not cancer center appropriate, I can just play it at home. I hope the neighbors don't complain and it's fine, but it's really fantastic, especially singing. So being able to sing with two of my instruments at least, I don't know. I'm sure there's violinists who sing. I'm not one of them. I don't have those skills. But with the other two, just go down into the basement. I have a microphone, I have a sound system and just get it all out. Get out all your frustrations, all the things that happened that day. It's very cathartic. It's a good release 

Dr. Lidia Schapira: Over the years, we've had a few essays in Art of Oncology that talk about music and how important music is for that particular author. And it's just so lovely to hear. So I want to end by asking you a very simple question, and that is, what is the song that is most often requested these days?

Dr. Beatrice Preti: Oh, that's hard. That's hard. It really depends who it is, because I've played to different generations. I have a rendition of “Zombie” by The Cranberries that a lot of people seem to like, “Losing My Religion.” But these days it's “Flowers” by Miley Cyrus, actually, I would say. Everybody seems to know that song.

Dr. Lidia Schapira: Well, it makes me feel very old because I don't. I was hoping you would say something about these ‘70s or I'll be more comfortable with ‘80s or even with Taylor Swift, but I'll have to go listen now. So thank you. I want to give you the last word in the podcast. What is the central theme of your message as an author and as somebody who's sort of bringing this forward and putting this in front of the global community of oncologists, what can music give us?

Dr. Beatrice Preti: Yes. Well, I think music and writing and words, which are a form of music in a way, they can help us remember, I think, the most important thing about Oncology, which is the human aspect of it. We're dealing with people who are frustrated, scared, alone, lost, in some of the darkest points in their lives. And it's a privilege to be able to serve and help these people through their journeys, but that's not always with drugs and treatments. Sometimes that's just with what we do or what we say, and that's a gift. But it's also a skill that needs to be developed and remembered. And having music is one of the things I think that helps me do that. 

Dr. Lidia Schapira: That's absolutely beautiful. So thank you very much for the work you do and for sending us your essay. And to our listeners, until next time, thank you for listening to JCO Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

Dr. Beatrice Preti is an Adjunct Professor at Western University in London, Ontario, in Canada.

In the poem, Housekeeping, by David Harris, a patient struggles with what it means to be saved. Read by Seema Yasmin.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

Housekeeping by David Harris. I've been clearing out my closets so that my husband won't have to afterward. She wiped her eyes on her hospital gown. I imagined her at home, pulling out hangers and holding up clothes to her wasted body, choosing what to save and what to throw away.

And by save, I mean leave behind for her husband afterward. Me imagining her imagining him, pulling out hangers, loosely dangling clothes, a Christmas sweater, the jeans he liked, a scarf, a blouse. Him wondering what he is supposed to do with a pink blouse.

Should he throw it away or bury it in some unsorted pile, half forgotten, or save it, leaving it hanging in the closet of their bedroom? I am talking to her about CPR now. About what we can save and what we can't. And by save, I mean prolong.

And she turns to me and asks what she is supposed to do with the word terminal. Afterward, after latex gloves are peeled off hands, after the bag is found and zipped around her quiet body, after all the things I said or didn't say, this is what we save. Her hospital gown, unbuttoned, washed clean, folded onto itself, with thousands of other gowns.

With me today is Dr. David Harris, a palliative care physician at Cleveland Clinic. Dave, welcome to our podcast.

Thank you, Lidia. I'm grateful to be here.

It's great to have you. You're the author of a poem that we recently published called Housekeeping. Before we start to talk about your poem, tell me a little bit about what you enjoy reading and perhaps what's on your nightstand right now.

Sure. I've been reading some nonfiction work on behavioral economics by Predictably Irrational or Thinking Fast and Slow by Daniel Kahneman. But I should also probably talk about poetry that I like reading, since the poem in JCO was published.

Two of my favorite poets, and if you read my poem and you want to find more like it, would be Mary Oliver and Marie Howe. And if you're looking for a place to start with those poets, you could look for What The Living Do by Marie Howe or The Fourth Sign of the Zodiac by Mary Oliver.

So training does one need to have to read and appreciate poetry?

Oh, that's a great question. I think when I was in high school, I kind of got scared away from poetry because it felt like something that I really didn't understand and that you had to have a lot of training to read and appreciate. But I don't think it necessarily has to be that way.

I find poetry really nice because it's short, and if you find authors that keep their poetry accessible, you can just read it and spend a moment appreciating it, and go on with your day. So I'd say you don't really need a lot of training other than just being a human being and bringing to the poem the experiences that you've had in your life.

I love that. And with that, let's talk a little bit about the poem that you wrote and that I've had an opportunity to read and love it, and that is Housekeeping. There's a line here that drew me right in, and that is the line, a very simple line, me imagining her imagining him.

It seemed to me that that's almost the perfect definition of empathy. Is that what you had in mind? The ability to connect and just imagine what it's like to be somebody else, to see the world through the mindset of another person?

Yeah. Thank you, Lidia. That's exactly what I was going for. I mean, I think that this poem is mostly in the speaker's imagination. The inspiration for the poetry was the quote at the beginning of the poem, which was told to me by a patient. I'd been cleaning out my closets so that my husband won't have to afterward.

And I think we've all had patients tell us something, and after we leave the room, we just pause and say, like, wow, I can't believe that that conversation just happened. And, you know, what a strange, and meaningful, and powerful thing that patient said to me. So that was the inspiration for the poem. And then for the rest of the poem, I was just sort of imagining different scenes or different thoughts that were inspired by that line.

So in the poem, you talked about having the difficult conversation with a patient, and you state this in the present tense. I am talking to her about CPR now. And then you bring us also to the world of the very practical task of having this conversation and imagining a time when the patient is no longer present, her death.

And then you have this parallel process where you describe all the tasks, the very practical housekeeping tasks, of what happens after death. The sorting of possessions and the dispatching of the body. Tell us a little bit more about how you thought about putting these two things together, and so compactly and beautifully.

Oh, thank you, Lidia. Yeah. I think as I was writing the poem, I began to think more and more about those material pieces of our lives, that they're of special significance when we're thinking about end of life. And that came from the patient who was going through her closets and holding out clothes and thinking, you know, am I going to wear this before I die or can I throw this away, and thinking about how much clothing means to people.

And then I thought about the hospital gowns and how much of a contrast that is, how impersonal that is compared to what people wear in their day to day lives. That sort of focus on these material possessions and these tasks that can be kind of mundane at times came out as I was writing the poem.

And there is this parallel, also, about what we do as physicians when we are looking after patients who are so ill. There are some very practical things, but then there are conversations that have to do with the ultimate abstraction, which is imagining not being here.

I think the title grounds us in the same way that some of these tasks, perhaps, ground us in our day to day world. I also thought that it was very interesting that you used the word afterwards twice, including leading with it in the last stanza. And I imagine that, perhaps, as you were thinking of a title, another title could have been Afterward.

Yeah.

So does that capture some of your process?

Yeah. Afterwards was a rough draft title. You guessed it. Because I think that so much of the poem is about thinking of the future or we're thinking about what's going to happen next.

I think I chose Housekeeping instead because one of the things that I really am interested in in art and in talking with patients is the importance of daily lives, or the importance of these kind of mundane tasks that we all go through.

And how, for people who have cancer and are struggling to maintain quality of life, sometimes doing the laundry or cooking suddenly becomes really meaningful and important to them, or maybe even housekeeping becomes meaningful and important to them. So that title felt like there were more layers to it, which is why I chose it.

You know, as I was reading this, and I read that you were imagining your patient imagining her husband's grief and her husband's reaction to her passing, I was imagining what you, as the clinician in this situation, were imagining and feeling. It was very impactful to me.

And there's something about how simple the lines are and the language is that really drew me in. Tell me a little bit more about your feeling and what this kind of an encounter with a patient does to you as palliative care physician.

Thank you for asking me that, Lidia. You know, this meant a lot to me. And after I left the room after having this conversation with the patient, I was struck by how profound that moment was and how meaningful having those conversations with patients is for me.

And part of the purpose of writing this poem and publishing it is to share that experience. I think most of us in oncology and palliative care go into the field because we look for moments like this and we appreciate moments like this. But also, day to day life can kind of make us blind to these things with all the paperwork we have to do and all of the red tape.

And when I talk to physicians who are feeling burned out, I notice that they don't really bring up moments like this anymore, and I feel like they're not noticing them the way they used to. So noticing moments like this and appreciating them helps me from being burned out, and I'm hoping that people will read this poem and sort of be able to be resensitized to those moments in their practice.

That's a lovely thought. I also would add that one of the themes that we find in the submissions we receive to Art of Oncology is this very sincere desire to honor a patient. And I read that also in your line.

Yeah. I mean, this patient has passed away, but they've made such an impact on me, and it feels like I need to do something to remember them. That's part of what made me write this piece as well.

Well, thank you for sharing all of that with us. And I hope our readers go back and read your beautiful poem, Housekeeping, over and over. Let me finish by just asking you a little about the process of writing. You-- are you a repetitive writer? Do you have time set aside to write, or do you write when you're inspired or when it calls you?

That's a great question. And I feel like people who have previously been on your podcast have said something similar. But for me, I have these moments, and it feels like there's something in me that has to come out. It feels like I already know there's a poem there, and I just have to start writing it.

So usually, that's how things begin. If I'm not feeling burned out and I'm in a place where I can notice those feelings, and then I start writing. And then once I've begun writing, I notice different ideas that I want to develop in the piece.

These are things that you picked up on, sort of this interest in the mundane, daily tasks of life, or another thing that I wanted to develop in this piece was the idea of saving, and what does it mean to save something. And then, you know, I just kind of keep writing and trying to figure that stuff out until it feels like the poem is done.

Well, thank you so much, Dave. I loved Housekeeping, and I hope you keep writing. So this ends our podcast. Please join me again for more of about cancer stories.

Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology Podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology.

TRANSCRIPT 

Narrator: The Power of Story, Erica C. Kaye, MD, MPH (10.1200/JCO.24.00013)

Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room.

Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life.

My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.”

Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care.

As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation.

Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling.

For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope.

As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care.

In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another.

“I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes.

“We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.”

Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed published data. The term anecdotal evidence is often wielded pejoratively, with the implication that the anecdote inherently lessens the value of the evidence.

Yet after many years in medicine, I now believe that stories are not just useful, they are essential. Listening to and reflecting on patient stories gifts us an otherwise elusive power to minister to suffering, connect meaningfully, influence decision making, and offer healing encounters, in a way that data provision alone cannot do.

I personally have seen the power of stories shift mindsets, grow solidarity, change culture, and shape policy. Sharing my own vulnerable stories about grief, infertility, pregnancy loss, sexism, abuses in our medical education system, and other uncomfortable topics has opened doors for difficult dialogue, driven problem-solving, and affected systemic changes, both within my institution and on a national level. I think it is our responsibility, as cancer care professionals, to recognize, practice, and leverage this power with purpose.

For me, on an individual level, the repetitive act of listening to stories has fundamentally changed me as a clinician and person. Being on the receiving end of another person's story compels me to slow down, to question my own heuristics and biases, and lean into my own vulnerabilities. The practice of telling my own story deepens my capacity for self-reflection, humility, and mindful presence. Sharing others' stories encourages me to lend compassion, patience, and grace to all of us enmeshed together in this chaotic, messy health care space. Collectively, all of these practices help me reflect on my boundaries, examine ethical situations with empathy, and reframe my role and responsibility as a healer.

As a scientist, I also think that the power of stories extends beyond the bedside. The most rigorous and impactful research studies are often those inspired by the stories of patients and families. Early in my career, I sat down with a group of bereaved parents to hear their thoughts about my research concept. Their vivid stories about communication between the medical team and their family directly shaped my research question and study design for the better. More than a decade later, listening to stories from patients, caregivers, and colleagues continues to help my scientific team develop holistic aims, hypotheses, and methods; implement study procedures that respect the person over the disease; and analyze and synthesize findings that honor and elevate community voices. Storytelling also strengthens my scientific writing, reminding me to not get lost in the weeds and simply tell a narrative that cuts to the heart of what matters to our community.

Yet the art of storytelling carries relatively little prestige or social currency in the field of oncology, particularly when compared with evidence-based practice. Oncology training rightly emphasizes the development of rigorous skills in collection, analysis, and interpretation of data; fewer aspects of our training incentivize us to value the art of storytelling. I worry that this is a mistake.

In my opinion, we spend substantial time teaching our trainees what to say and not enough time teaching them how to bear witness and listen. We have drifted too far from the core philosophy of Hippocrates, who believed that careful listening to patients' stories held the key to revealing diagnostic and therapeutic truths.1 Rooted in Hippocratic principles, the first clinical skill that medical students practice is how to elicit a patient history, listen actively, and reflect on a patient's unique story to develop a problem list, assessment, and plan.

At the core of each patient encounter is the fundamental concept of narrative competence, comprising a clinician's skills with respect to bearing witness to, acknowledging, interpreting, and sharing stories.2 About two decades ago, the field of narrative medicine, or medicine practiced with narrative competence, was popularized and championed as an approach for teaching and sustaining holistic, person-centered health care.3 Today, a growing literature shows us that training and practice in narrative competence has the potential to improve communication, collaboration, empathy, mindfulness, and professionalism in medicine. In the field of oncology, multiple studies have investigated the feasibility, acceptability, and impact of interventions such as reflective reading and writing, oral and visual storytelling through art and music, and experiential learning sessions on narrative competence for cancer care professionals. While mostly single-site studies, the findings suggest that narrative-based interventions can foster mindfulness, emotional connection, and solidarity; improve self-awareness and self-compassion; encourage personal satisfaction, sense of accomplishment, and overall well-being; improve ethical decision making; strengthen collaboration and teamwork; bolster resilience; and mitigate burnout and secondary traumatic stress for cancer care professionals.4-10

Yet clinicians often face barriers to the integration of narrative-based approaches in education and clinical practice. Lack of time, resources, and support are commonly cited as roadblocks to incorporating storytelling in day-to-day activities. Templated notes may hinder the dual, interrelated processes of listening to and documenting patients' stories, reducing lived experiences to a litany of check boxes. Despite these challenges, simple exercises can increase narrative competence with minimal time or effort. Even a short, one-time session of reflective writing can help health care professionals explore and learn from difficult clinical experiences with seriously ill patients.11 For those who don't enjoy writing, the brief act of reviewing patient narratives can be impactful: for example, oncologists who spent a few minutes reading digital stories written by patients with cancer reported positive changes in their patient-clinician relationship, a heightened sense of empathy and intimacy, a greater appreciation of the patient as an individual, and rehumanization of health care work.4

For narrative-based approaches to grow and thrive in our field, though, we need clearer definitions of what constitutes narrative practice in oncology. I suggest that narrative oncology should encompass the purposeful practice of eliciting, listening to, reflecting on, creating, or sharing stories about the cancer experience, told through diverse mediums, with intentional integration of these acts in clinical practice, research, and educational arenas. Narrative-based approaches or interventions in oncology should comprise a spectrum of deliberate activities including reflective reading, interpretation, discourse, and writing practices designed to emphasize and promote self-awareness, compassion, and humanism in cancer care.

I encourage us, as a field, to respect narrative oncology as a unique corpus of knowledge, comprising content experts to inform its relevant applications to education, research, and clinical practice and governed by its own criteria to assess competency and impact. We can appreciate that the aims and skills underpinning expert narrative oncology practice may overlap with other areas of expertise, such as communication skills training, while recognizing the distinct competencies required to engage in, role model, facilitate, teach, and study narrative practice in oncology.

Each time that I listen carefully to a patient's story, or share my own story with others, I feel myself grow as a clinician and as a person. It can be tricky to measure or prove this growth, and some people may argue that quantification belies the spirit of narrative practice. Personally, I believe that, for the field of narrative oncology to grow in legitimacy and impact, we need to develop some consensus standards and collaborative approaches to demonstrate value to naysayers. I am hopeful that oncology, as an evidence-based field, can rise to this challenge. At the same time, we should anticipate a priori that we won't be able to capture every intangible impact, and lack of data must not discourage us from advocating for the importance of stories in cancer care.

Certainly, changing the culture around storytelling in oncology will not be effortless. I believe that a multipronged strategic approach is needed to grow credibility for the field of narrative oncology, and I encourage colleagues to consider supporting the stepping stones outlined in Table 1.

I hope that we are reaching an era in modern medicine when the power of listening to and telling stories need not be controversial; it is time for the field of oncology to be proactive and purposeful about legitimizing, teaching, and practicing storytelling across clinical, education, and research settings to benefit patients, caregivers, clinicians, researchers, and communities.

When I think back on that difficult DNR conversation years ago, I remember none of the data informing our high-stakes medical decision making. I don't recall the odds of further disease progression or third-line treatment efficacy. I do remember, though, each story that the mother shared, as I knelt at her feet, listening quietly. She told me stories about hope and faith. About fear and despair. About family and resilience. In the end, I got the DNR, but I left the room with so much more.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University. Today, we are joined by Dr. Erica Kaye, the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. In this episode, we will be discussing her Art of Oncology article, "The Power of Story.”

At the time of this recording, our guest has no disclosures.

Erica, welcome to our podcast and thank you for joining us.

Dr. Erica Kaye: Thank you so much for having me. I am so glad to be here with you today.

Dr. Lidia Schapira: It is such a pleasure. Before we dive into the content of this beautiful essay, and a call to action in a way, tell us a little bit about your relationship to writing as a physician both in training and now in practice and also as a researcher and educator. What role does writing have for you as a person?

Dr. Erica Kaye: That is such an important question, one that I am not sure I have ever been formally asked before so thank you. Thank you. So transparently I studied English as an undergraduate and focused specifically in poetry for my Bachelor of Arts degree. And so I spent a lot of time during a formative period in my life thinking carefully about language and writing, about the construction and also the analysis of words and how carefully we choose them to communicate and share a message. And then when I entered into medical school, I spent a lot of time thinking about the power of language, about the ways in which the words we choose convey a profound meaning and enable us to connect with others in incredibly powerful ways. And I was fortunate, through some luck, to encounter the field of palliative care, which is anchored in the power of language and communication. And so for me, it was a natural marriage of the things that I felt so passionate about, learning communication and conveying stories through words and through body language in order to connect meaningfully with patients and families in a very sacred space at the, arguably the most difficult and stressful times in their life.

And so as I now train other students and many come through our clinical and research programs, from undergraduates to graduate and medical students and residents and subspecialty fellows, we really emphasize the importance of storytelling in the work that we do in medicine and in research, and I would argue as people of the world, and try to help students understand that the ways that we construct narratives about our patients, about one another as colleagues, about the world in which we work and live in, the ways that we construct and reflect on those stories, so powerfully influence how we feel in our practice and how we collaborate with one another in the work that we do. And for some of us, we can connect really deeply with that message through writing. And through others, we can act through oral storytelling, or through mindful listening and reflection. So there are lots of different ways to engage in the creation and sharing of those stories.

Dr. Lidia Schapira: So, Erica, let me just go a little bit deeper into this and into the personal meaning for you. You talk about poetry, and the one lovely thing about poetry is that you have to use very few words to get out the essence and meaning of your message. So for you, does writing or reflecting through storytelling bring you joy, lighten some of the emotional burden perhaps that we carry because of the work we do? Tell us a little bit more about it from a very personal perspective.

Dr. Erica Kaye: That's a fascinating question. I am not the kind of person who would say that the practice of writing itself brings me joy, although sometimes it does. But I think, for me, the joy comes in the practice itself, from the knowledge that something I write will connect with another person. And so I think a lot in my practice, as I'm choosing carefully the words that I want to place on a page for others to read or hear, I think about how that might resonate or create meaning making for somebody else.

Dr. Lidia Schapira: So you talk about intentionality as well, right? That seems to be what I'm hearing you say, intentionality and putting effort into actually thinking through this instead of it being perhaps an automatic process. That's incredible. And I would say that the other thing that I'm hearing you say, maybe you didn't frame it exactly like this, is that in the act of choosing your words, in delivering and crafting a message, you're also showing some wisdom or appreciating the wisdom that can come from the proper telling of such stories. Is that- does that get at it, or am I making this up?

Dr. Erica Kaye: I think that’s true. And I also think that I find something sacred about the idea of being able to connect in a meaningful place with somebody who I may not know. And sometimes there's conscious, purposeful direction towards that moment. And sometimes I think it may be unconscious trying to create a message or a feeling for the idea or the hope that someone may receive it on the other end.

Dr. Lidia Schapira: That’s a beautiful thought. Turning back to the title you chose for the essay is about power, so let’s talk a little bit about power. As I see that is one of the central messages that it’s not just about releasing our own emotions onto a page, but it’s also about leveraging some of the power that we have to implement change or to help others. You talk a lot about the elusive power but you also talk about very concrete benefits of storytelling. Can you tell us a little more about how we should think about that?  

Dr. Erica Kaye: I love the word ‘power’, and not because of the way in which it’s traditionally used in a unidirectional approach wielded by someone against or on another, but because of the root. So I think of empowerment and how important it is for people to feel like they own and can share their power. And so I think the reason I chose that title was a purposeful and directive reminder to the reader that we all share in this collective power, so that title becomes then in and of itself a form of empowerment.

Dr. Lidia Schapira: That’s a very important and relevant message. You also talk about the fact that telling stories has generally been devalued within our professional community because it is dismissed and put in the same bucket as anecdotes. And anecdotes, we have all been trained are sort of bad when we’re at the bedside making recommendations. Can you untangle that for us a little bit, see story from the anecdotes, and the power that comes from storytelling and how it is different from the aspects of anecdotal medicine that we have been taught to set aside?

Dr. Erica Kaye: I think that’s a complicated question. For me, there is not a whole lot of difference between the data point, an anecdote, which I agree with pejoratively characterized and the story. And a lot of these are semantics and how we choose to present information to shape a message that conveys how we think or feel to influence the people we care about around us. And in our profession of oncology, I think we have over relied on quantitative data points to do that task of conveying a message that’s important to us to influence the people around us, and for good reason because our clinical trials are reliant on these data, that inform our next steps, how we practice, how we advance our field so that we can better care for our patients and families. And I also believe there’s huge value in the anecdote. For me, an anecdote is a story of how an individual experienced something or how we observed someone experiencing something. And I think there’s huge value in listening to our colleagues share an anecdote about something that happened when they treated a patient or hearing a patient or family member share an anecdote about what they experienced in this space. And I think these anecdotes contribute to the practice of medicine as an art and not simply as rote progression to an algorithm founded exclusively on data.

And maybe it’s semantics, but for me, I think, when we capture all of this information and reconceptualize it as a story, it somewhat levels the playing field. For me, when you tell me a story that’s rooted in quantitative data about why this information is important to you and  conveys a message to influence someone that you care about, that’s very meaningful, and I want to listen to that story. And similarly, when someone shares a story rooted in more abstract information about their personal experiences, what they see, feel, think, perceive, wonder, hope, worry about, that’s also incredibly important information that I want to create space for and integrate into how I think about sharing a story about something I care about to influence others.

Dr. Lidia Schapira: And you say in your essay that that requires competence or it requires a series of skills, and study and preparation. Tell us a little bit more about how one gets to be competent in telling a story in such a way that you just did that really becomes a tool and is in and of itself a powerful tool.

Dr. Erica Kaye: That is a really important question. And I like to start by debunking the fallacy that I think many of us carry, at least internally, it’s a message that gets socialized, this idea that you are either good at this sort of thing or you’re not good at it. And I think that that is largely baloney. I think that some of us intrinsically tend more towards active listening and the art of storytelling resonates with us. And because of that, we lean into it more and have more opportunities to practice, mess up, think about it, practice again. And maybe others intrinsically are less drawn to it and therefore have fewer of those opportunities to practice, mess up, and try again. I really believe though that all of us have the ability to become excellent, impactful, effective storytellers in medicine and in our lives. And I think that practice is arguably the single most important practical component or ingredient. However, in order to create those spaces for practice, facilitate it, be open to it, I personally think that the most important attributes to name for people, to hold them accountable to our humility and vulnerability, and unfortunately, medicine and science do not incentivize us to lean into either humility and vulnerability. And so I think there are a lot of opportunities for us as we role model in medicine and in science, as we create opportunities for learners, for us to be more verbal about socializing those terms as positive attributes so that we can grow together in this space.

Dr. Lidia Schapira: So, Erica, I am hearing you talking about a cultural change, that the culture is not oriented towards some of these values that you say that are sort or essential or underpinnings for promoting storytelling and opening ourselves up to that more expressive part, whether or not we are wonderful with words as you are or not or struggle to put them together into an understandable sentence. Can you talk a little bit about the table that you provide in your article and the very practical suggestions that help us think more about this in practical terms about, again, moving the culture slightly away from what you described as the status quo which is more aggressive and puts down the story and one that values the story and cultivates traits such as humility, openness, and curiosity?

Dr. Erica Kaye: Thank you. I think, like many things in our world, the answer often lies in growing a new generation, who thinks innovatively and often differently than we have historically. And that doesn’t mean that we give up on ourselves or our peers, our seniors. It means that we empower and listen to the lessons that we can learn from the people coming up after us. And in doing so, they will shape and change the culture in our present as well as for others in the future. And so the table, I think, focuses on a few areas. First, is the idea of integrating the arts and humanities into education earlier, and reconceptualizing what we mandate as essential prerequisites for a career in medicine and science. So, why do we feel so compelled to say that Physics is an absolute requirement in order to apply to medical school, yet understanding the art of communication is not? What are the opportunities at an undergraduate level for us to rethink how we encourage students in this very formative time to begin shaping their influences and prioritizing their interests and what they feel to be most valuable in shaping who they become on their journey? 

I also think there are concrete opportunities for us to be empowered at an institution or center level where we can have one on one conversations with our peers, with our leaders about our personal experiences with the power of storytelling, how it shapes our profession in real time and the value that we derive and that we see the potential for learners to derive. And then I think there are concrete strategies for us to think bigger on a national level leveraging our professional organizations, making sure that we have purposeful space for these types of narrative medicine experiences at our national meetings, that we create special interest groups and forums that facilitate and foster the coordination of networking and mentorship and sponsorship around these meaningful topics. And that we think carefully about our avenues for scholarship and hold our medical and inter professional journals accountable to valuing the human centered experience as much as we value population level data

Dr. Lidia Schapira: So, my final question, of course we can go on chatting for a long time but just to bring this podcast to a close, Erica can you think of perhaps an Art of Oncology essay that we've published that sort of opened your thinking up in new ways or that really impacted you, touched you, or moved you as a reader?

Dr. Erica Kaye: Absolutely. There have been many pieces that have touched and moved me, and so without lessening the impact of all of the others, I might mention a piece entitled "Knuckles," about the experience of, I believe, a radiation oncologists, who felt challenged in connecting with the lived experience of one of her patients who came from a very different set of circumstances than her, and espoused beliefs that she found abhorrent and the effort poured into connecting on a human to human level and the ways in which that connection can be so powerful in shaping minds, changing biases, opening our eyes to our collective human experience. I found that piece to be very beautiful.

Dr. Lidia Schapira: I am getting chills and a little misty as I hear you talk about it. So thank you for reading, thank you for writing, thank you for sending us your work and for everything that you do in this field.

Dr. Erica Kaye: I am so grateful that JCO creates this meaningful, important space for oncology healthcare professionals to appreciate the power of story in oncology

Dr. Lidia Schapira: Thank you, Erica. And until next time, thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience and conclusions. Guests' statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio: 

Dr. Erica Kaye is the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital.

Additional Materials:

Table 1

Knuckles, by Kathryn Hitchcock

Knuckles podcast

A medical team empowers a family to love fully by allowing them to feed their child.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

Alonzo was a 10-year-old boy with a recurrent refractory brain tumor whose disease progressed through multiple therapies over many years. When no additional cancer-directed options remained, Alonzo was admitted to the hospital for symptom management as he approached the end of his life. Although Alonzo was unresponsive and posturing, his family continued to hope desperately for a miracle. As they kept vigil around the bedside of his frail body, praying and waiting, they gradually began to notice, and then fixate on, how the sharp angle of his bones protruded more with each passing day.

Alonzo's mother believed fervently that his body needed nutrition. She understood that Alonzo was dying, that modern medicine had failed to keep the cancer from ravaging his brain, yet, as a mother, she continued to feel a profound desire and duty to nourish her child. She couldn't bear the idea that he might be feeling hungry, while unable to ask for food. She felt that, if he were to die of starvation as opposed to cancer, she would have failed him as a mother. She also continued to pray for God to create a miracle to heal Alonzo, and she believed that a healthy, nourished body was essential to host this miracle.

Each day, our medical team spent hours debating how best to partner with Alonzo's family to align his medical management with their deeply held goals and beliefs. We worried about the provision of enteral nutrition, as Alonzo's gut was impaired in the context of his disease progression, placing him at significant risk for aspiration. We discussed the sizable risks related to the placement of a nasogastric tube to initiate enteral feeds with the low likelihood of long-term benefit. His mother expressed understanding, yet her broken heart steered her to feed him soup in secrecy later that evening. Alonzo choked, turned blue, and developed respiratory distress. It took several days to restabilize him. His mother was traumatized and racked by guilt, and yet she continued to speak of nothing but his need for nourishment.

Fearful of oral and gastric feeds, she turned her energy to the prospect of intravenous sustenance. She begged us to consider total parenteral nutrition. As the days passed, we gently explained how the acute risks of volume overload and hepatic dysfunction outweighed the negligible long-term benefits. She expressed understanding, but with tears brimming, she pleaded for us to find some way to give him something. Just a little fat, sugar, and protein. His brittle, translucent skin was breaking down at each bony protrusion, and she believed that even a small amount of nourishment might help to heal his festering wounds.

By this time, our medical team was emotionally overwhelmed. Upon admission, Alonzo's prognosis was days to a week or two. By the eighth week, the inpatient team was incredulous and exhausted. We spent multiple hours each day at the bedside with Alonzo's mother, bearing witness to her grief, validating her wish to be a good parent, affirming her spiritual belief in the possibility of a divine miracle, reiterating the limitations of medical interventions, and sharing in her wish that Alonzo not suffer.

Our medical team gathered to debrief. Oncologists, nurses, palliative care clinicians, nutritionists, chaplains. We all shared a common desire to partner with Alonzo's despairing family without causing undue harm to our frail, voiceless patient. We talked about Alonzo's mother's love, how she never left his side, her warm hands gently caressing his emaciated limbs. Our nutritionist wondered aloud, might there be a safe approach for the topical application of essential fatty acids? We called our pharmacy, and they had not previously dispensed topical oils to patients.

We then turned to the literature, and found several citations that suggested possible benefits associated with the topical application of oil, with no evidence of inherent risk. One study suggested that topical administration of essential fatty acids might lessen the progression of pressure ulcers in individuals with poor nutritional status. A few published manuscripts theorized that the absorption of essential fatty acids through topical application was feasible, predicated on case reports and theories describing the reversal of essential fatty acid deficiencies with cutaneous application of the essential fat linoleic acid in pediatric patients ranging from neonates to adolescents. A randomized controlled trial looked at transcutaneous absorption of massaged oil in 120 newborns in a tertiary care neonatal intensive care unit, demonstrating a significant increase in serum essential fatty acid profiles in the cohort that received topical safflower oil, with no appreciable adverse effects.

Yet, even more compelling than the potential to offer a gentle nutritional boost was the possibility of empowering Alonzo's family with a hands-on intervention that could manifest, both literally and figuratively, their love and desire to nourish him. In the context of his family's profound spiritual distress, we also wondered whether coupling two forms of love, nutrition and touch, might offer comfort to the caregivers suffering at his bedside. Prospective evaluation of a systematic intervention to promote physical contact between a caregiver and a seriously ill child in the pediatric intensive care unit has been shown to improve caregiver spiritual well-being. In partnering with his family, perhaps we could minister to their spiritual distress, as well.

Our team also became encouraged by reading the growing body of data cataloging the benefits of therapeutic touch for infants and children. We learned that premature infants who receive massage at the bedside gain weight faster and discharge days earlier than those who do not receive therapeutic touch. Within pediatric oncology populations, evidence suggests that the provision of simple massage techniques, either by trained health care staff or by parents who receive training from staff, is feasible and effective for improving anxiety, sleep fatigue, and overall quality of life. Of note, in addition to positively affecting caregiver distress, therapeutic touch may also mitigate patients' suffering, as evidenced by reductions in analgesic administration.

Emboldened by these data, and united by our shared mission to support this child and his family, our oncology team sprang into action. A team member drove to a local grocery store and purchased a bottle of safflower oil. A pharmacist officially answered the oil into our formulary for the bedside nurse to dispense. The inpatient team placed an order for one teaspoon of safflower oil gently massaged into the patient's skin by caregiver four times per day.

At the bedside, our oncology and palliative care teams explained to Alonzo's family that the topical absorption of oil would not cause Alonzo to gain weight. We discussed transparently that, although a small amount of essential fatty acids would be absorbed, this was extremely unlikely to replete his nutritional stores or prolong his life. Through tears, his mother expressed understanding. A team member trained in pediatric massage demonstrated and taught his mother a series of simple, safe massage techniques to provide comfort at the bedside. We encouraged her to nourish Alonzo with her bare hands, to caress his arms and legs gently with the safflower oil.

In synergy with the topical oil, we also started intravenous fluids with 5% dextrose at a few milliliters per hour, plus a tiny daily dose of 5% albumin. We shared frankly with the family that the small amounts of sugar and protein would not yield weight gain. However, the total amount of fluid was low, mitigating the risk of worsening secretions or pulmonary edema. With unified consensus, we gave Alonzo just a little fat, sugar, and protein, less so to nourish Alonzo's cachectic frame, and more to nourish the minds and hearts of those who surrounded his bedside with love.

Alonzo's family expressed deep gratitude for these offerings of sustenance. The excruciating daily conversations, which previously had fixated on feeds with circular dialogue, evolved into forward-looking discussions about end of life, grief, and resilience. Alonzo's mother assumed primary responsibility for the application of the oil, creating a formality around the process that culminated in loving caresses and gentle massage.

For a hands-on parent, this single intervention carried profound therapeutic power. It allowed his mother to fulfill her duty to feed her child, thereby affirming her desire to remain a good parent, even as she watched her child die. It empowered his family to provide tender, devoted touch as part of their loved one's care, thereby gifting a small sense of control and contribution in the respective faces of perceived powerlessness and uselessness.

It eased his mother's spiritual distress, as she felt successful in her advocacy to nurture Alonzo's corporeal host, as she prayed for a divine miracle. It created a deep therapeutic alliance between the medical team and the family that felt heard and honored, thereby smoothing the path for future difficult discussions as imminent end of life approached. And it eased the distress experienced by a clinical team that felt helpless in the face of extreme caregiver suffering, ultimately bringing us together through a unified mission to honor the family's goals while providing high-quality and holistic medical care.

24 days after we offered nourishment, Alonzo died, peacefully, surrounded by his loving family, his frail body gleaming with soft swirls of oil. His mother cried, holding his hand, her face pressed against his. When she lifted her eyes, tears falling, she reached for our hands. "Thank you for listening. Thank you for sustaining us."

Hippocrates, revered father of medicine, allegedly said, "let food be thy medicine, and medicine be thy food." Just as we administered medications to ease Alonzo's physical suffering as his disease progressed, so did we offer nourishment. And for his family, just a little fat, sugar, and protein was the medicine that yielded the most profound comfort.

As our team debriefed this difficult case, we grasped a salient truth-- to nourish is to love. By allowing his family to feed their child, we empowered them to love fully. Alonzo's story helped our team to realize that addressing nutrition at the end of life is paramount. We have a responsibility to be proactive in discussing nourishment when a patient is dying so as to better support families who feel helpless to nurture their loved ones.

We acknowledge that traditional approaches for nutritional support through enteral nasogastric feeds or total parenteral nutrition are not inherently inappropriate for patients who are at the end of life. Our team believes that it is essential to avoid drawing arbitrary lines in the sand that automatically negate the use of low-volume nasogastric feeds or total parenteral nutrition.

Rather, we advocate for the consideration of nutritional interventions on a case-by-case basis, weighing the risks and benefits for each unique patient and family. In this case, the clinical team believed that even small volumes of nasogastric feeds and total parenteral nutrition carried significant risk for incurring harm, without hope for benefit. Initiation of topical essential fatty acids, in synergy with low-volume intravenous dextrose and albumin, however, brought Alonzo's family substantial comfort, with no evidence of harm incurred.

Since the culmination of this difficult case, our team has offered the option of administration of topical essential fatty acids and massage training to multiple other families who expressed a desire to nourish their children in the context of approaching end of life. For each family, this simple, non-invasive intervention has provided comfort, without appreciable detrimental sequelae. We believe that the interdisciplinary team should explore the nutritional values and goals of every family at the bedside of a dying patient, and all caregivers who express distress or uncertainty should be given an opportunity to learn about topical essential fatty acids and nurturing touch as comforting options.

In the context of families perceived to be difficult, clinicians often worry that offering any intervention will result in a slippery slope of demands for additional escalation of care. In our experience, however, we have observed the opposite. These simple and relatively benign interventions lessen tension, facilitate trust and partnership, and create space for dialogue about other goals as death approaches.

Cost and accessibility are also important considerations. Compared with enteral or parenteral fats, the price for topical oil is negligible, and options are available at most local grocery stores. Practically, our team typically offers safflower oil, which contains 60% to 70% linoleic acid and has shown potential for topical absorptive qualities. On the basis of prior studied regimens, we recommend the administration of 5 mL topically to extremities through light, gentle massage four times per day, as desired by family. However, sunflower, sesame, soybean, and corn oil each contain linoleic acid, and might be used interchangeably, depending on which oils are most readily available.

Among our team and with our families, we acknowledge that topical essential fatty acids and a trickle of dextrose and albumin provide negligible nutritional content if one's metric for efficacy centers on weight gain or repletion of nutritive stores. However, we also recognize that, in these difficult cases, the sum, nourishment, can be so much greater than its individual parts-- a little bit of fat, sugar, and protein.

Beyond the concrete value of food, we saw the power of nourishment to support families by gifting them an invaluable sense of control within a situation that is otherwise uncontrollable. Within the quintessentially human belief that food is love, we discovered a unique opportunity to offer a family in crisis a few concrete tools with which to honor and affirm their roles and responsibilities as primary caretakers and good parents.

By listening and aligning our medical management with the values and goals most important to the family, we identified a path to build trust, ease regret, and accompany them along the painful anticipatory grief journey. Through this partnership, we found a way to alleviate stress for both the family and clinical staff. Of importance, we also discovered an intervention that bridged multiple medical disciplines, bringing unity and collaboration as sustenance for clinicians practicing each day within a poignant space.

When Alonzo's mother carefully reported the safflower oil into her hands, she did so with reverence, determination, and purpose. When she laid her palms on his broken skin, she brought together nutrition, touch, and love in a single, simple, therapeutic intervention. Empowered with the knowledge that she held in her own hands, the ability to provide comfort, she nourished her child and herself, and by doing so, she sustained us all.

Welcome to Cancer Stories: The Art of Oncology narrative series. I'm Lidia Schapira your host. And with me today is Dr. Erica Kaye, a pediatric oncologist and hospice and palliative medicine physician and researcher at St. Jude Children's Research Hospital. Welcome, Erica.

Thank you so much for having me today.

It's great to have you, and love to chat with you about this new piece that you just published in Art of Oncology, which addresses the need to provide nourishment to children who are sort of in the ultimate phases of their illness. Tell us a little bit about the inspiration for this piece.

Thank you. So this piece was inspired by a real-life patient for whom our pediatric oncology and hospice and palliative medicine team had the privilege of caring. He was hospitalized at the end of his life, and died very slowly over the course of multiple weeks in our inpatient unit. And during that process, his family struggled profoundly with their inability to feed him.

And we began to think quite a bit about what it means to nourish a child, and how nourishment takes many forms, not just corporeal, and not simply food going into the mouth and through the gut, but the many ways that parents love and support and nourish their child and themselves spiritually and emotionally, and the ways in which teams are deeply affected by parents as they struggle in that space. And so we decided to share the lessons that we learned from this complicated and very difficult case at the end of life, and how we found beautiful compromises to help promote the importance and value of nourishing a child even throughout the dying process, what that looked like and what they taught us.

In the essay and now, you just talked about the effect this has on the team. In the essay, you mentioned that you all thought this child would die, and then by the eighth week, you say the medical team was both incredulous and exhausted. And it sounds like you needed to find sort of a creative or resourceful way of sort of opening up and aligning again with the family, and that you did this by listening to what the mother was saying, was asking, and by giving her the opportunity to give the child a little fat, and then you provided the sugar and protein. Tell us a little bit about that nourishment, and that idea of sort of the gifts that were exchanged from your team to the family, and then the family back to the team.

Thank you. That's such a thoughtful question. And this family, and in particular the child's mama, struggled very deeply with her inability to feed her child as she sat minute by minute at the bedside watching the child slowly die. And I think, in the sort of paradigm of a good parents narrative, how we internalize our role as, quote unquote, "good parents," to a certain degree, the concept of food as love is quite integral to that good parent narrative.

And although she fully understood, from a medical standpoint, why giving enteral or parenteral nutrition would likely cause more harm than benefit to her child, the inability to give him fat and sugar and protein created tremendous existential, emotional, and spiritual distress for her. And as we listened and validated and affirmed her wishes and goals and fears, we, as an interdisciplinary team, began to try to think creatively about how we could honor the needs that she had to fulfill her role as a good parent, while also not introducing undue harm or suffering to the patient.

And through some research and creativity and exploration of limited existing literature, we decided to empirically trial teaching compassionate touch through gentle massage in conjunction with the application of topical essential fatty acids. And our thought process was that not only could we create a space for his family to offer a small amount of nutrition, the fat that was so important to them, but we could couple that with empowering them to be that good parent, that caregiver at the bedside, participating in the offering of not only sustenance through fat, but sustenance through touch and through love.

I think what was most profound as we partnered with the family in this process was seeing their palpable relief, and how much their trust in the team grew through this experience. And the therapeutic alliance that was engendered through these simple offerings was very meaningful and profound, and I think created a remarkable positive feedback cycle. The more they trusted us, the more they listened to our recommendations.

And I think it's really important to note that, often, we on the medical side fear a slippery slope hypothesis, that the more we offer, the more the family will ask for. And that has not been our clinical experience. I think when we listen carefully and thoughtfully, with an eye towards partnering genuinely and authentically with families, it does not create unreasonable requests for more. And I think it instead creates trust and love and support bidirectionally. And that was a very meaningful lesson, I think, that our clinical team learned.

Yes, and to the reader, Erica, it comes across as the suffering of caregivers, both the professional caregivers, the members of your team, and the family caregivers, the informal caregivers, it was reduced in sync. So what helped the family also helped the team. And there's something very beautiful on an existential level of thinking about that, sort of the power of connecting. You connected with each other, and then with the child. And then, as a reader, what is really impactful is that the child is slowly dying for these eight weeks that feel so exhausting, and then, within 24 hours of relieving this caregiver distress, it's as if everybody can let go and the child dies. Did your team have a chance to think about that?

Absolutely. So quick point to clarify, I'd say within hours of beginning the interventions, there was palpable relief at the bedside, and all the conversations evolved in an organic and very meaningful way. The child actually lived another 24 days after initiation of those interventions, which, on some level, was an ongoing difficulty for both the family and the staff because a prolonged dying process is very emotional.

But on many levels, those 24 days were such a gift to the family and the staff. There was an opportunity for intentional and thoughtful legacy-building and memory-making, and there was provision of a significant amount of psychosocial supports throughout that process. And I think because we were able to relieve the stress intrinsic to feeling powerless and unable to nurture the child, we were able to focus instead on meaning making, in all of its many, varied forms. And I think that was incredibly useful, not just for family, but for the staff to see and participate in.

So wearing your research hat now, if you're looking at this and think about ways of studying it, I have a couple of questions. One is, is your team studying it? And the other is why you chose to tell this story as a story to this readership, in order to perhaps help to start a dialogue or-- you know, what were you thinking? Why present it as a story?

Thank you. Those are both incredibly important questions and considerations. The former I think is very interesting. I have been reticent to design a research study to the gold standard that I think is deserving for answering important and unknown research questions, in the sense that I believe strongly in the meaning making inherent to this offering and am quite reluctant.

I feel like it is borderline ethically fraught to withhold the opportunity to consider this intervention. I think it's really important to talk about nutrition and nourishment on many levels with the families of all children at the end of life. And so I feel quite conflicted about the idea of offering this intervention to some and withholding it from others. And think it's a very deeply personal decision, what feels meaningful to a family and what doesn't, and would like to empower families to make the choices that most align with their goals and their belief systems.

That said, I think it would be very interesting to try to study the value added by this intervention, even if retroactively, through interviews and focus groups with families whose children have died, and ask them, you know, what conversations around nutrition, if any, were had? What was meaningful to you? What do you wish had been discussed? What are your thoughts about this type of intervention? Might it have been helpful to you, or if this or a similar intervention were offered, what was helpful and why? And so that's something that I have been thinking about, and that we will likely be moving towards in the future.

To respond to your latter question, I am quite biased as a personal believer in narrative medicine. I think that the narrative, the patient's story holds such tremendous power, not only in allowing for self-catharsis and self-reflection, but also in the transference of meaningful lessons learned and in advocacy, in helping to empower others to learn and teach and move the needle at their respective institutions. And so we were quite intentional about our decision to share the lessons that we learned through the lens of the stories that impacted us. And in this particular case, the one patient who really got us thinking deeply about this issue.

I think there's a lot of emotional valence intrinsic to the sharing of a true story, and that emotional valence allows us to connect with and remember lessons learned in ways that, often, objective didactic does not. And so I believe that this format is very meaningful for all of those reasons, and I also think that it reaches a wide and diverse target audience of readers within the field of oncology, all of whom may interpret and synthesize this information in unique and personal ways, and then, I hope, take it with them to share with their colleagues and to help inform the clinical experiences that they go on to have in the future.

Well, Erica, that has been so enlightening. I look forward to reading some of that qualitative research that you'll probably do by interviewing families. I love the idea that there's an almost sacred aspect of the experience that perhaps we should always strive to improve, but shouldn't tinker with. And one of those has to do with the expression of that incredible emotional connection between a parent and a dying child. And so we should definitely support it in any way we can.

And then how we can strengthen our own community of thoughtful oncologists to be creative, to be resourceful when they are faced with a situation that, at some level, may almost appear to be a conflict, but if you sort of peel back all the layers through narrative, through listening, you actually can find that you can align with the family around a common goal. And that makes everybody better, and certainly relieves caregiver distress, in addition to family suffering. So thank you so much for your beautiful writing, for your advocacy, and for sharing it with the readers of Art of Oncology.

Thank you so much. It is an honor to be able to share these stories and, in doing so, honor the patients and families for whom we care. Thank you.

Thank you so much.

Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

Dr. Hayes interviews Dr. DeVita about his role as Director of NCI and his time with CHOP and MOPP.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

TRANSCRIPT

[MUSIC PLAYING] The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

Welcome to Cancer Stories. I'm Dr. Daniel Hayes. I'm a medical oncologist and a translational researcher at the University of Michigan Rogel Cancer Center. And I'm the past president of ASCO. I'm really privileged to be your host for a series of podcast interviews with the founders of our field.

In this series of podcasts, I hope to bring appreciation of the courage and the vision and most importantly the scientific background among the leaders who founded our field of clinical cancer care over the last 70 years. I hope by understanding the background of how we got to what we now considered normal in oncology, we can all work together towards a better future for our patients and their families during and after cancer treatment.

Today, my guest on this podcast is Dr. Vincent T. DeVita, best known as Vince. Dr. DeVita is generally considered one of the so-called Gang of Five, including Doctors Canellos, Young, Chabner, and Schein, who I've been trying to get on for this podcast in the future, all at the NCI, and who brought many of the concepts we now accept as standard into the clinic in the 1960s and '70s.

Dr. DeVita is currently a Professor of Medicine and Epidemiology and Public Health at the Yale School of Medicine. I think it's also fair to say, Dr. DeVita was instrumental in the passage of the 1971 National Cancer Act. And I want to hear more about that as we get into this.

He was director of the NCI and the National Cancer Program from 1980 to 1988 and then moved to Memorial Sloan Kettering Cancer Center as Physician in Chief and subsequently became the Director of the Yale Cancer Center in 1993. Among his many honors-- and I don't have time to go through them all-- but he has served as President of the American Cancer Society. And I think most dear to me, he was President of ASCO in 1977 and 1978. Dr. DeVita, welcome to our program.

Nice to be here, Dan.

I've done a little background. I know you grew up in the Bronx. And I know you went to William and Mary for undergrad and George Washington Medical School. And I also read what I didn't know, which is that you did your internship and residency at the University of Michigan.

We're recording this just before the NCAA basketball tourney. And I have to say, go blue. We're all excited here in Ann Arbor about our basketball team.

[LAUGHTER]

What I'm really interested in is, were your parents physicians? Or what made you choose medicine out of the Bronx?

Well, no, my father was a banker. And my mother was an interior decorator. So it was kind of a funny mix.

But I think it's kind of peculiar. I was growing up, and my mother-- I tell this story in my book. My mother was kind of frightened by the fact that I really, as a seven- or eight-year-old kid, really thought the guy who delivered the ice-- in those days, we had ice boxes-- was terrific. And I wanted to be like Nunzi the iceman.

And she panicked and said, no, no. You're going to be a doctor. And every time someone asked me what I was going to be, I just said I was going to be a doctor. And when I went to school, I decided I'd be a doctor. It was sort of Mama driving me in that direction.

So you had a choice of being an iceman or a doctor [LAUGHS].

Right. I like-- I mean, biology was always a favorite subject of mine. So it was a good fit.

And tell me about how you ended up going to the NIH and choosing oncology. Was that serendipitous? I talked to Bob Young the other day. And he said, fundamentally, he hadn't planned to be an oncologist and got to the NIH and liked it. Was that your role, or did you know you wanted to do cancer from the start?

No, I was going to be a cardiologist. In fact, when I was a first-year resident, I did cardiac catheterizations and was a co-author on a paper that for a long time was well-cited in the field. So I applied to both the Heart and Lung Institute and the Cancer Institute.

And those are very competitive positions. And I had an interview with Robert Berliner, which didn't go well [LAUGHS]. So I didn't get invited to the Heart Institute. And I went to the Cancer Institute.

And when I walked in, Dr. David Rall was the chief of the pharmacology branch. And I asked him if I could work on the pharmacology of digoxin. And he, wise person that he was, said, sure. Go ahead if that's what you want to do.

And I was surrounded by people who were working on anti-cancer drugs. And I actually became fascinated with them. And it was only a few months, because I was also on the wards at the time, that I said, oncology is the way to go. It was an exciting new field. It was kind of a funny field in those days. But I found it exciting, so I switched.

So just to give you a plug here, I think many of us know that you wrote a book, The Death of Cancer, published a couple of years ago, co-written with your daughter Elizabeth by the way. But in it, you described a number of things. And one of those that I loved were your stories about Gordon Zubrod.

And I trained with Dr. Frei at the Dana-Farber. He always had great things to say about Dr. Zubrod. And I wonder if you could tell the folks listening in who he was-- I think most people don't even know that-- and the impact he had on our field.

Yeah, I used to call him the great umbrella. The field was very controversial at the time. And so the people who were doing things like saying, I'm going to try to cure this cancer-- leukemia in Frei's case and Hodgkin's in our case-- were considered just a little bit this side of insane. He was somebody who was distinguished.

Now, Frei had-- Zubrod had been at St. Louis as a professor and also at Johns Hopkins. And he was a very distinguished-looking man and a very polite, careful man. And so he used to provide sort of the umbrella for all of us, so that [INAUDIBLE] he'd take the heat. And we could go on and do our work.

So he was-- he did enormous number of things. I mean, the whole clinical trial structure was established by Gordon Zubrod. The phase I, II, III trials was all done in a paper by Gordon Zubrod in the late 1950s. So I think he was just a guy who had foresight and was a great leader.

I ultimately took his job. He got tired of bucking the bureaucracy and retired and went to Florida as the director of their cancer center there. So I got to know him pretty well. And like Frei, I have great admiration with him.

I mean, it's interesting how we take phase I, II, and III for granted. And when he came in, and not too long before you came in, those things weren't-- nobody really knew how to do this stuff. Doctors Frei and Freireich were already at the NCI when you got there, correct?

Yes, indeed. Yeah, they were.

Yeah.

And so they must have been inspirational.

They were, and especially Freireich. Freireich was always on the wards. And Tom didn't come over to the wards very much. He was sort of the direct-- he was chief of medicine. And Freireich was the chief of the leukemia service. So we saw Freireich all the time. Tom came over once in a while.

And Jay was a super doctor. And it was very hard to stay ahead of him. You'd get an x-ray on a patient. And he'd call you up 20 minutes later and tell you what it was. He was already down looking at it. So you had to stay on your toes with Jay.

And of course he was, as everybody knows-- Jay-- he was a bold guy, who-- I mean, he looked like he could walk through a wall. So he frightened a lot of people. But he was an inspiration. So I'm always grateful for what Jay Freireich taught me.

There's a great story in your book, that Dr. Frei has told me as well, about the first platelet transfusion at the NCI. Can you elaborate on that? I think most folks don't know about that story.

Platelet transfusion was, again, one of those radical departures. But Freireich reasoned that we were losing more people from bleeding than we were from leukemia. So he worked out a way of plasma pheresing people and collecting platelets. And we didn't have a lot of the expertise we have now.

And they came in quart bags. I mean, they were plasma bags that were huge. And we were treating little kids. So they were-- throwing them into heart failure was a problem. So it was pretty radical. And he was told to stop doing it by the clinical director at that time.

And in fact, he was told that if he didn't stop doing it, he was going to be fired. And he told me-- he said, I went back to my office, sat down, and thought about it. And I decided I didn't want to work at a place where I couldn't do that. So I just kept on doing it. And the person who said he was going to fire him never did. But that was Jay Freireich.

[LAUGHS]

He believed so strongly in it. And when I went to Yale right after I left the Cancer Institute-- I finished my residency up there. And I told them-- when I saw leukemia patients who were bleeding-- and I said, what you should do is platelet transfusions. And they said, they don't work.

And I said, I used them. And I saw them work. So I think we're losing patients unnecessarily. It was just very controversial. So eventually I left the program.

I was going to take a residency and then a fellowship in hematology there. And I decided to go back to the Cancer Institute where these adventurous things were going on. Times are different now, of course.

Dr. Frei once told me a story that he-- you may have been with him-- that he was making rounds in the clinical center. And in those days, apparently, the adults and the kids were in the same ward. And there was a child with essentially no white cells, who'd been induced for leukemia, and a man next to him with CML.

And so-- and actually, when Dr. Frei told me this, I kind of said, I don't think I want to hear this story, because he said, well, you know, the kid didn't have any white cells. And the guy next to him had way too many white cells. So [LAUGHS] I said, tell me you didn't do this.

He said, yeah, we took platelets out from the guy and gave them to the kid. And the kid got better for a while. It was really exciting. I thought, boy, you don't see that anymore.

Yeah, I mean, it was a very reasonable thing to do, because the white cells in a chronic myelogenous leukemia patient work very well in terms of fighting infection.

Yeah.

So there was no reason. And the kids, otherwise, wouldn't survive. And so, yeah, I was there when we got these-- we gave these. I mean, they weren't easy to give, because they stuck in the lungs. And we didn't have HLA matching at the time. So they were-- a lot of them were mismatched.

But for a while, they were effective. And then we went to collecting white cells from normal people. But the white cells had not worked as well as platelets had worked.

Platelets have been a lifesaver. Now it's a couple of hundred million dollar business each year now. So it's routinely done, as many things that Jay started are routinely done now.

Of the many things for which you are credited, I think it's the use of combination chemotherapy for Hodgkin's and then subsequently non-Hodgkin's that is one of your lasting legacies. There must have been a lot of drama around doing that. I mean, I think we all just assume you're going to start protocol. You write the protocol. You get funding for it. And you go forward.

But can you give us some stories about sitting around at night and thinking about how to do this? Or how did you choose those drugs and why and how to give them and the obstacles that were involved?

Yeah, actually, it was a very complicated process. And we didn't have the information we have now. What we had was-- I was doing this with Jack Moxley, who left active medicine and became a dean after he left the Cancer Institute. But we're still in touch.

And Jack was working with [? Sy ?] [? Perry ?] using the new isotope, tritiated thymidine, looking at the bone marrow of CML patients and also of mice. And I was doing the same thing with the leukemia 1210, which was a model that we used for chemotherapy all the time. And what we were trying to do was figure out the kinetics of human versus mouse marrow, so we could develop schedules that humans would survive.

We quickly found out that you can't use the mouse as a model, because their blood cells went through a kinetic phase about half the length of humans. So you had to schedule in a different way. So we worked that out.

And then we looked at very simple-- something that people really ignored is that when you give a chemotherapy agent that is toxic to the marrow, you don't get abnormal blood counts right away. For a week, you'll have a normal white cell. And then on day seven or eight, it begins to fall, because the storage compartment in the marrow works well for about a week. And then there's no replenishment. And the white count falls.

So between the two, looking at the marrow and looking at the white cells in the periphery, we came up with a schedule for MOPP. And then the other things were simple. We just decided that you'd have to have three or four drugs that worked by themselves.

There had been people doing combination chemotherapy before-- Tom Hall in Boston and [? Alan ?] [INAUDIBLE] at Yale. And their rationale was they're looking at a sequential biochemical blockade. But they ignored whether the drugs actually worked against the tumor, assuming that if you gave them together, that the biochemical blockade would dominate.

And it didn't work. In fact, it was very discouraging. But we decided the way to do it was take drugs that had some activity in the disease and use them together and use them in full doses in the schedules that we worked out because of the prior work I was telling you about. So it took a while to put that together.

And then Jack Moxley and I used to do this at a bar in Georgetown called the Lehigh Grill, where we used to-- my cardiology desire-- I used to go to Georgetown where there was a wonderful cardiologist Proctor Harvey, who used to hold Thursday night sessions. You had an auditorium that was wired. So you could hear heart sounds. And after that, we'd go to the Lehigh Grill. And we sort of put together the protocol.

When we presented it to Tom, he thought it was a good idea. But the other people around him thought it was insane and really tried to stop it.

Tom Frei?

Yeah.

Tom Frei, yeah, yeah.

Well, Tom was supportive. Yeah, Emil Frei was his real name. But everybody called him Tom. Yeah, he was supportive. But the people around him and my immediate boss was very much against it, because he thought it would interfere with the protocol that they were doing and so forth.

So Tom worked out a solution worthy of Solomon. He said, OK, we could do-- the magic number for phase I trials in those days was 14. If you got nothing in 14 patients, then you didn't go any further. So we could do 14 patients with the first protocol, which was called MOMP-- M-O-M-P.

And we had to do the workups ourselves. We couldn't use other colleagues to work up the patients. And we had to go get the patients ourselves. So Jack Moxley and I did all those things. And the results were very encouraging.

And then Jack left. And I sat down and decided that we'd put procarbazine. I was working on procarbazine. It was then called [INAUDIBLE]. And I was working on it and doing the pharmacology in the phase I study with it in Hodgkin's disease. It was a promising candidate. So we put it in. And that became MOPP.

Also in those days, six weeks of therapy was it. They didn't get more than six weeks. We reasoned that the marrow problems would be acute. But you'd have to give it probably for a long period of time to affect the tumor.

So we gave it for at least six months or to a complete remission plus two months. And we assumed that there were cells left after we couldn't see them. So it was a lot of good thinking that went into it that turned out to be correct, because most of the-- since then, a lot of protocols follow the same sort of routine. And it really works for a lot of cancers.

But it was controversial. I went to the AACR meeting. This was before ASCO. And I presented it as an abstract. And David Karnofsky, who was sort of a god at that time at Memorial Sloan Kettering, just tore me apart.

And what was I doing using the term complete remission for a solid tumor. He said, that was a term that was used in leukemia. Now, I didn't say it. But I'm thinking, the reason you use them is you can get complete remission. So we had complete remissions.

And I was kind of shaking with the microphone in my hand at the time. So it was a scary but it was a good experience.

I have to say--

So it just gives you an idea that people were not receptive [INAUDIBLE].

Those of us who are junior to you can't imagine that you were intimidated by somebody else [LAUGHS].

Well, I was a youngster, then. I was-- Jack Moxley and I, I would say, thinking back, we were cocky. But the big guys in the field could scare me. And Zubrod was a-- I mean, Karnofsky was a big guy in the field.

Yeah.

He just had a hard time getting out of the leukemia mind frame. And so of course, we've used complete remission since then in any kind of solid tumor where you can get one.

In your book, you have a great quote that you presented somewhere. And Dr. Frei was there. And Wayne Rundles was there. Wayne, of course, has been at Duke for 100 years. And he said, do your patients speak with you after you're done?

Well, Wayne Rundles-- when he first saw the MOPP protocol, Wayne Rundles said, that's nonsense. He said, I get the same thing with nitrogen mustard by myself. Well, nobody had ever got that with nitrogen mustard. So we actually had to set up a controlled trial and do it and prove that MOPP was better.

So when I presented it when we were first starting it-- at a meeting. Tom had arranged this meeting with all the bigwigs in the field. And when I presented it at that, everybody was sort of quiet. And then Wayne Rundles raised his hand. He looked pale. He raised his hand and said to me, Dr. DeVita, do your patients speak to you after you do this?

[LAUGHS]

So he-- a few years later when we were obviously getting good results, he invited me to grand rounds. And by then, we were good friends. And I was up on the podium. And after I gave the talk, he was sitting down below smiling at me.

And I said, Dr. Rundles, if you remember, you asked me if your patients speak to you when you do this. And I can tell you that they do for a lot longer. So it was fun. But it was fun. He was a good friend by then. And I had great respect for him.

Actually, he was a very nice man.

He was.

When did you start thinking that you had a success? Was it during those first 13 patients or 14 patients that you treated? I mean, was it obvious right away, or did you start [INAUDIBLE]--

Well, it was obvious--

--you were in the wrong place?

We put-- no. We thought it pretty early, because we were worried. We put patients in reverse isolation. Nobody knew whether you were going to kill them if you gave them all these drugs together. And it turned out the first surprise was, yeah, they had the usual toxicity. But it really wasn't that bad. So it was doable.

And the second was-- we had a small number. But we had-- something like 80% of the patients went into a complete remission. And I think nobody had seen that. Now, the question was, how long were they going to last?

So we were optimistic. And when we put patients on it, there was no cure for them at that time. And we said, we're optimistic that this is going to be something that will last. But we don't know.

And then by three years, it looked pretty good. And I think I presented the first abstract four years after we started. And by that time, we had relapse-free survival curves. And again, nobody before that time had presented relapse-free survival curves in any of the lymphomas. So by then, by four years, I think we felt we had probably cured some patients with the disease.

I asked Bob Young this same question. Did you feel a sense of history at the time, that this was really historical? Or did that come later when you looked backwards?

I think what people don't realize about those days is neither Freireich nor ourselves were treating leukemia and Hodgkin's disease. In other words, we weren't out to develop a treatment for those diseases. We were out to prove you could cure cancer with drugs, because nobody believed it. If you said that, they really thought you had gone balmy.

So we were out to look-- so we knew if we could do it, it would be historic. So we were excited when we looked like maybe it was going to happen. By that time, when we had first reported it, the VAMP program that Freireich did, which was an historic program-- he only had 17 patients. And they actually never published a paper on VAMP. And I asked Jay why they never did that. And he said because he didn't think they would accept it anywhere.

So but by that time, they were getting about a 50% complete remission rate going four or five years. And they were thinking they're curing leukemia. And we were getting 80% complete remission rates. So I think everybody felt that we were going to prove that you could cure cancer with the drugs. And we did.

So yes, in a sense, we set out to do something that would be historic. And so when it happened, I think, it is. It was a sort of a door opener for medical oncology in Hodgkin's disease.

I'd like to turn now for just a minute to your role in politics. You were pretty instrumental, I think, when the National Cancer Act was signed in 1971. And that also sounds like a TV drama to me. It sounds like-- and I know this anyway, but in reading your book, it was not clear that was going to get through. Can you give us some of the playground behind that and Mary Lasker's role and how that happened?

Well, Mary Lasker played a big role. The MOPP program actually played a big role, because Mary Lasker was sort of working in the background. Cancer was always a cause for her.

But when we did the MOPP program, there was a guy named Luke Quinn, who she had hired to be a lobbyist, who was sort of hidden in the American Cancer Society so they wouldn't realize it was Mary Laskers' lobbyist. And he was referred to me by Sidney Farber.

And I didn't want to take him at first, because he was diagnosed as having gall bladder cancer. And I said to them, you know-- I said to Sidney Farber, I don't really treat patients with gall bladder cancer. And there was silence on the phone. And he said, (SOMBER, COMMANDING VOICE) you will take this patient.

[LAUGHS]

So I took the patient. And when I examined him, when he came down and I examined him, he had adenopathy in both axillae. And gall bladder cancer just doesn't do that. So I had to do another biopsy.

He was not a pleasant guy. So it was not easy to do these things. I had to get another biopsy. And it turned out that my pathologist at the time, Costan Berard, when he compared the biopsy, he said, it's a lymphoma, clearly. It was a diffuse, large cell lymphoma.

What they had done is, because Claude Welch did the surgery-- a very famous abdominal surgeon-- and he said it was gall bladder cancer, that the pathologist sort of assumed it was. And it was a compression artifact. Long story short, he went into remission.

And Mary Lasker went gaga. Wait a minute. We got something here. And that was what pushed her to get her friend, Senator Ralph Yarborough, to put up a committee on cancer to come up with the Cancer Act. And--

So it must have been quite a day when President Nixon signed that.

Yeah, well, it was-- I wasn't at the signing. I wasn't high enough up in the chain to be invited to the signing. But yeah, I have all the photos of him signing it. And later when I met him-- I have a picture in the book of he and I shaking hands and him looking like he's having a roaring laugh. People ask me what I said that was funny. And I have no idea.

But when I asked him, I said what is your greatest achievement as a president? He said two-- opening up China and signing the Cancer Act. So he was--

Really?

Yeah, so I think he was proud that he did that.

That's a great story. Actually, the other story I had not heard, but read in your book-- I'd like you to tell me about your lunch with Mr. Featherstone.

[LAUGHS] Featherstone Reid, his name was. Well, this was a very-- this was a regular occurrence. Mary Lasker, when she came to town, would stay with Deeda Blair, Mrs. William McCormick Blair, who was a Washington socialite and had a lovely house on Foxhall Road.

And they would have lunches and dinners. And they always arranged it so that people-- the scientists sat next to somebody with influence. And this is how they influenced the Congress to put more money into the cancer program.

So one time, I got a call in the morning from Deeda Blair, saying, I'm having a lunch. We'd like to have you there. And I said, gee, I-- it's too short notice. I can't do it. And she said, well, Mary really wants you to be there. Mary was hard to say no to.

So I rearranged my schedule, drove down to Deeda's house. And there was a big black limo sitting in the front of the house. I went in, and they introduced me to Featherstone Reid. I had no idea who he was. And every time Mary would say, we want more money for research with leukemias and lymphomas. Vince, tell him about what's going on. And I would tell him about.

At the end of the lunch, he left. And Mary and I sat down on the couch to have a cup of coffee. And I said, Mary, who is Featherstone Reid? And she said, he's Warren Magnuson's driver. And when she saw the shock on my face-- Senator Warren Magnuson was the chairman of the appropriations committee of the Senate.

When she saw the shock on my face, she said, wait a minute. When Mrs. Maggie-- he takes Mrs. Maggie shopping during the day. And Mrs. Maggie-- he fills her with all this information we're giving him. And then Mrs. Maggie is the last person to put her head down on the pillow next to Warren Magnuson.

This is the way she worked. She would take someone like Magnuson, who was a good friend, but she would surround him with extraneous people who would say the same thing. So it was sort of like subliminal stimulation for him. He was always hearing these positive things. And then he supported the program. She was a piece of work.

I never got to meet her. But it sounds like she was a force of nature.

She was.

And of course, the Lasker Award is now named for her and her husband and sort of the American Nobel Prize. She's had such [INAUDIBLE].

Yeah, and our crew won it in 1972-- Frei, Freireich, myself, and other people for other things. So I'm very fond of Mary Lasker, obviously.

It's just a wonderful story.

And I got to know her pretty well, so.

I have one other question. And I'm not sure you'll want-- if you don't want to go off on it, we can edit it out. But in your book, you talked about Howard Skipper and Frank Schabel. And Dr. Frei used to talk about them all the time.

And I think it's worthwhile to bring them into the history of what we do. Did you actually work with them or collaborate with them, or just base some of your ideas on what they had in mind?

When I was starting at the Cancer Institute, I thought Schabel worked at the Cancer Institute-- I mean, Skipper worked at the Cancer Institute, because I would be working in the lab. I was doing the tritiated thymidine studies on L1210 mice. And he would be looking over my shoulder.

He was doing the similar studies, but he was just doing it with cell counts in the abdomen of the mice. And he thought that was good enough. And he was there at a weekly meeting we had, which George Canellos named the Society of Jabbering Idiots. It was a great, great meeting, actually.

[LAUGHS]

And he was there all the time. And my view and Tom's view differ a little bit on Skipper. I think he was a real driving force, that he did the studies in mice that we were doing in the clinic with people.

And he actually-- in 1964, he wrote a paper showing that you could cure L1210 leukemia. It was the first example of curing a mouse with leukemia. And I think-- so it was sort of a feedback mechanism between the Cancer Institute and the Southern Research Institute.

So and he did-- he used to do these booklets. And I think he published hundreds of these booklets. Some of them, we convinced him to actually publish as papers. But I have the collection. There may be 100 booklets he wrote.

And he would take a concept that we were working on and then work through it in mice. It was very, very important. And he was a wonderful person. His only problem was he smoked like a chimney. But he was-- I liked Frank and Howard.

Yeah, Dr. Frei had the entire set of monographs on his bookshelf in his office and would encourage us to come in and borrow them and read them and come back. And frankly, he basically predicted what you've done with combination therapy. He predicted adjuvant therapy working. There were just a number of things he saw in these mice that we've gone on to apply in the clinic. It's pretty remarkable, I think, so.

Yeah, I mean, it's not only he predicted it. But he actually showed the concept worked in mice. So as we know, mice and human are very different [INAUDIBLE]. There was a guy in Boston, Stuart Schlossman, a very fine scientist. And he didn't like mouse models. And when asked what he would do when he saw a tumor-bearing mouse, he would say, I would step on it, because he didn't believe mouse models.

And but Frank and Howard did experiments and made allowances for the difference between humans and mice. So it was always good to know. I mean, I have the summary he wrote on Hodgkin's disease after he saw the MOPP program. So I think they're very instructive booklets. So I kept them. Like Tom, I think that we sort of live by them.

Well, thanks for discussing them. I think our listeners need to remember these two guys. They were great.

We're running out of time. I've really just touched the surface of what you've done and contributed to the field. And the people you've trained is sort of a who's who of oncology, frankly. But at the end of the day, what's your-- I'll ask you the same question you asked President Nixon. And that is, what is your legacy? What do you want people to remember that Vince DeVita did?

I get asked that question a lot. And I don't have one thing that I can say. I mean, I've been lucky in my career that I've had a chance to do many things.

Being the Director of the Cancer Institute was wonderful. You could sit on top of the whole field and just sort of scan it and see what's going on. And it was very important, because you've become the spokesman of practicing physicians at the same time.

MOPP, of course, was important. Putting out the first comprehensive textbook in the field and watching it-- we just came out with the 11th edition-- is also very exciting. So there-- we were the first to successfully treat Pneumocystis carinii pneumonia. And we reported it in a paper in the New England Journal. I mean, there were a lot of things.

I'm best known, I think, for MOPP, probably, and the principles of MOP, which I'm very proud of. But there's so many that I have a hard time. I like opera. And people ask me, what's my favorite opera? And I usually say, it's the one I just saw.

It's very hard for me to pick one opera. There's so many that I like. So I'm not dodging it. But I just never can say, well, it's this.

That's very fair. Frankly, I think, without your contributions, I probably wouldn't be sitting here doing what I do. And I think there are thousands of us who would say that. So we're--

Well, that's very flattering.

Well, not only are we appreciative, more importantly, there are a lot of people who are alive who wouldn't have been without what you and your colleagues did at the NCI that so many years ago, so--

[INTERPOSING VOICES]

I was involved in the training of 93 medical oncologist. At one time, something like 40% of all the [INAUDIBLE] directors were our graduates. So they have gotten around. And that was good for the field. They went out with the same principles we were developing at the Cancer Institute, so that's very gratifying.

Have you kept in touch with any of the patients that you're treated back at the NCI? I talked to Saul Rosenberg. And he told me he still sees people that he treated 30 or 40 years ago when he first moved to Stanford.

We're writing a paper on the 45-year follow-up of the first 188 patients. Again, nobody has 45-year follow-ups. And we called every one of the survivors. And there's something like 60% or so of the complete remissions are alive.

So I talked to some of them. But we had a nurse talk to a lot of them. And I got messages from them after the call. And some of them still contact me, after sort of an anniversary of their treatment. So yeah, I've kept up with them.

The gratifying thing is most of them are suffering from the same illness as most people who are getting into their 70s or some of them 80s. They have hip problems and so on and prostate cancer. But there doesn't seem to be any really major increase in anything in these long survivors.

Now, mind you, these were patients who got MOPP as their only treatment. And so when you see second tumors in these kinds of patients, it's usually patients who got radiation therapy plus MOPP. So these patients who are 45 years had just got MOPP. And they seem to be perfectly fine.

That's remarkable. I love your comment that they are getting the same illness as the rest of us get as they get older. That's great.

Yeah, we don't cure bad hips and bad knees and--

Yeah, we can't cure old age. When I was at the Dana-Farber, I had a patient who had been one of Sydney Farbor's original patients from the early '50s. And by this time he was obviously an adult. He was older than I was. And he was fine, as you've said.

Although he said Dr. Farber kept treating him and treating him and treating him. And then finally, when Dr. Farber passed away, someone else picked up his chair. And they said, why are you still getting this? And they stopped it.

Yeah.

So he got a lot of treatment.

I had one of Freireich's VAMP patients. She was a girl in her early teens. And she was a wildcat. But she had had something else, and it failed. And she was one of the first patients on VAMP. And she went into remission. And she stayed in remission.

And I followed her for many years. She went to college. She got married. She had children. She brought her children in to see me. And last time I had any follow-up with her, she was in her 60s. And she was one of the really first long survivors of that particular program. So it's really neat to see these patients.

And it's not rare for me to go to a meeting and have people walk up to me and say they got MOPP 25 years ago. Someone else gave it to them. And they're alive and well. So that's one of the great gifts of having a chance to do this kind of work.

What a privilege. Well, I think we need to end. Again, I want to thank you for being on with us today and filling us in with some of these stories. Had really good feedback for my podcast series. And it's because of the people I've had on it. So thank you very much for all you've done.

It's really good talking to you. And I look forward to listening to all your podcasts.

[MUSIC PLAYING]

Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcast or wherever you listen. While you're there, be sure to subscribe so you never miss an episode.

JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

[MUSIC PLAYING]

A doctor recalls how deceased patients both haunt and sustain her.

Read "Haunted" by Dr. Katherine E. Reeder-Hayes on JCO.org.

Listen to ASCO’s Journal of Clinical Oncology essay, “How Are You, Choi-Seonsaeng?” by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. The essay is followed by an interview with Choi and host Dr. Lidia Schapira. Choi discusses how navigating US healthcare is similar to acclimating to a foreign country.

TRANSCRIPT

Narrator: How Are You, Choi-Seonsaeng?, by April Choi, MD (10.1200/JCO.22.02103)

It was not until Mr. Yoon’s nurse contacted me (an intern eager to flex her Korean skills) for an “agitated patient who is trying to leave the hospital” that his limited knowledge of English became apparent to everyone.

Mr. Yoon was sent down to the radiology department for an additional computed tomography scan earlier that day. He had been admitted for partial bowel obstruction secondary to a colonic mass. After his scan was completed, a technician reportedly told him that he was “good to go.” As soon as he arrived back in his hospital room, Mr. Yoon, happily thinking that he was being discharged, began to pack his belongings and changed out of his hospital gown. The nurse, aware of the team’s plan for his upcoming hemicolectomy but ignorant of what had transpired downstairs in radiology, interpreted this as the patient trying to leave against medical advice.

I ran into his room, ready to de-escalate the situation, only for him to turn happily around and ask in Korean, “how are you, Choi-seonsaeng?” (seonsaeng means a teacher, but here it is used as an honorific for respecting the person to whom it is addressed).

His hospitalization was already difficult because of a lack of family support; his surrogate decision maker was a fellow church member of whom he had “asked for a favor.” To add to this, his English was just good enough to cause more harm than good. Had he not spoken any English, more people would have defaulted to using an interpreter. Instead, he knew just enough English to convince his doctors and nurses that he understood his treatment plans, and they would leave his room each morning satisfied when he would smile, nod, and say “no questions.”

I could empathize with the struggle that he had in this hospital. As a 1.5-generation (those who immigrated before or during their early teens) Korean immigrant growing up in California, I quickly became an expert in appearing unfazed by something, even if that thing seemed very odd to me at first. Things like adults asking me to call them by their first names. Following my friend into their living room without taking off my shoes.

Someone telling me, “I see where you’re coming from,” when I had been sitting down and talking to them for the past 15 minutes—I was not coming from anywhere! In most of these situations, my strategy has always been to smile, nod, and try not to say anything that might sound incredibly stupid. I am fairly certain others implement similar strategies when navigating different cultures as they travel in foreign countries. After all, most of us do not harbor the communicative finesse that Anthony Bourdain had while interacting with the locals in Parts Unknown. For many of us immigrants, “smile-and-nod” ends up being the default response in unfamiliar or uncomfortable situations, such as in hospitals.

I can attest that this sense of “foreignness,” or “Asianness,” never quite goes away. Although my parents would increasingly comment that I “act like an American,” and even after I had been living in the United States longer than I had in Korea, my Korean-ness stuck around.

Sometimes more, sometimes less, very much like the awkward lilt in my English that made people ask, “so where are you really from?” I would prick my own thumb with a needle if I had indigestion because I was told it would get out the bad blood. When I got nauseous, I would make myself jook, or rice porridge, because it was the only thing my stomach could tolerate. I continue to identify as a Korean—maybe Korean American on some days, but never fully just American.

On my last day of service, Mr. Yoon was still waiting to get his hemicolectomy. As I explained the general plans involving surgery followed by chemotherapy, he asked if there was any way he could have some jook before his upcoming hemicolectomy. He had been ordering oatmeal, but it “wasn’t right.”

I could only eke out, “I’ll look into it,” before I ran out of his room and straight into the unit’s physician’s workroom. There I started crying and babbling incoherently to my non-Asian co-intern about jook and how I simply must get some for Mr Yoon. Although crying in a workroom for sleep-deprived and overworked interns might have been a rite of passage in my residency, I cried because it had finally dawned on me that Mr. Yoon was terrified of his diagnosis.

This gentleman, who was more than twice my age but still made my day by referring to me as a seonsaeng, had been smiling and nodding his way through the uncertainty of his cancer diagnosis and what was to come. He wanted something he was accustomed to, something he could bank on to make him feel better.

For him, like many Koreans I know, it was the jook. Unfortunately, he had no friends or family checking in on him, let alone bringing him food that he enjoyed. For him, finding a way to get some comfort through jook was more important than hearing strangers give reassurances of “everything will be fine” and “we have a plan.”

On that day, I was reminded of when I moved to a strange new city for medical school, forlornly eating dinner by myself when instead I could be surrounded by my family and talking about how our day went. I understood the sadness you feel when you are sick and too tired to do anything, but you are cooking your own jook because your mother is not there for you.

I empathized with wanting to eat food that you are accustomed to and the distress you feel when you are unable to find it because of where you are or the situation

you are going through. In my family, food is both comfort and love; sharing food is how I know I am cared for.

For Mr. Yoon, it was not just about food but rather the lack of support he felt during his upcoming cancer treatment. I ended up getting some jook delivered to our hospital that day. I recall muttering something about wishing him an uneventful surgery as I tearfully handed him the plastic tub of jook. Several months later, I was paged to the hospital unit and found Mr. Yoon waiting for me, skin duskier than I recalled but overall appearing well. He told me that on being discharged after surgery, he connected with a Korean-speaking oncologist and completed his chemotherapy.

His oncologist told him his recent scan did not show any evidence of cancer. He said he had been meaning to visit me because he wanted to thank me for the jook I had given him before his surgery. We talked for a bit before I had to leave for my afternoon clinic—that was the last time I saw Mr. Yoon.

Several years and a worldwide pandemic later, I find myself fortunate to be training in oncology in a strange new city again. I am once again reminded of how difficult adjusting to a new area is and then think about how more difficult it is for our immigrant patients to navigate their cancer treatment. Undergoing cancer treatment is very much like immigrating to a different country. You cannot be 100% sure of what may happen in this new country, and no amount of second-hand information from other people can adequately prepare you for what lies ahead. You do not quite grasp the language, so you smile and nod your way through each doctor’s visit and hope things will turn out alright. When you couple this with an actual language barrier, it may feel like being lost in a foreign country without being able to ask for directions.

It is important for us oncologists to dig deeper and understand the cultures from which our patients come. Instead of asking if they are eating well, ask what they enjoy eating. Are they able to eat the food they were eating before? Or are they navigating a new diet planned by a nutritionist who does not know the difference between oatmeal and jook? Have we considered what a patient’s family does to provide support, on the days when chemotherapy is too rough and the nausea is too bad? We may be surprised to find what is hidden behind the polite nods and small smiles.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and a Professor of Medicine at Stanford University.

Today, we're joined by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. In this episode, we will be discussing her Art of Oncology article, ‘How Are You, Choi-seonsaeng?’

At the time of this recording, our guest has no disclosures.

April, welcome to our podcast and thank you for joining us.

Dr. April Choi: Good morning. I'm glad to be here.

Dr. Lidia Schapira: Well, it's afternoon in California, so, it's wonderful that you are someplace where it's morning. Where exactly are you today?

Dr. April Choi: I'm currently in South Korea visiting my relatives.

Dr. Lidia Schapira: That's wonderful, and brings us to the heart of your essay, which is a moving narrative that describes your interaction when you were a medical resident, with a patient who is a Korean immigrant. Tell us a little bit about the motivation that led you to write this article and then share it with others.

Dr. April Choi: First of all, I'm very happy that you enjoyed this article. It comes from my heart, and I've been meaning to write this article for many years now, actually. And I wrote this piece initially a year after I saw Mr. Yoon again. I think one of the things that I wanted to share with everyone is how difficult it could be as an immigrant to navigate the complexities of the hospital, even if you do speak a little bit of English. And I think the cancer part really complicated his care, and I really wanted to make sure that people who might not have this interaction, because they grew up in the United States, or have never encountered someone who is from a different culture, to be able to experience, second-hand, what it feels like to treat someone who is of the same culture, but might not have the linguistic sophistication or experience working in healthcare system.

Dr. Lidia Schapira: You start off the article with a little dose of humor that I found very refreshing - turns out that your patient, Mr. Yoon, is told by an X-ray tech or a CT tech that, "He's good to go." And he interprets that as, "He's good to leave the hospital", only to find that the nurse misinterprets his preparation to leave as, "He's leaving against medical advice." And that's when you enter the story. Bring us to the bedside; tell us a little bit about your interactions with Yoon.

Dr. April Choi: I think, in retrospect, it might have been very funny. I do have to say, when it happened, it was a very stressful time for me. I was not in that hospital unit at all until I got this call, when the nurse was very distraught and said, "You need to come to bedside. He is trying to leave, he's agitated, he won't listen." And as I had written in my article, I ran. I ran towards his room because by then, we had developed some sort of a relationship where he would actually ask me, "Oh, what was that other doctor talking about?" So, we had a really close relationship, and when I heard that he was agitated, I couldn't believe it because he was one of the nicest patients that I had seen before.

And for me to find out that he was under the impression he was being discharged after all this, I was immediately reminded of my parents, and how they speak enough English, where they can get by, but at the same time, I don't think they would be okay in a hospital setting. And I think that goes for a lot of 1.5 generation, as I talked about in my article, as well as the second-generation immigrants, where they understand everything, but for their parents, it's not the case.

Dr. Lidia Schapira: So, let's talk about your parents and our patient here, and then those who perhaps just speak a little to get by. And it's easy to think that in a hospital setting where there's so many time pressures and everybody wants to be efficient, sometimes, things just slip by, and we don't take the time, perhaps, to ask as many questions, because we don't have an interpreter at bedside, or because it takes a little bit more effort. You give these examples so beautifully in your essay. What are you doing now that you're an Oncology fellow, or future Oncologist, to communicate with patients?

Dr. April Choi: I actually do a lot of drawings. I think drawing is one of the strongest ways someone can communicate. So, a lot of the times I have my multicolored pen, and I will draw whichever they need to - if it's esophageal cancer, I will draw them where their cancer is located-- right before my vacation, I talked to someone about radiation fields - I will draw little rectangles, and talk about how, no, reradiation is not possible, for example. I do try to use very simple language, and when I say simple, I don't mean to say that they are any less intelligent than we are because a lot of our patients, in their own language, they're amazingly intelligent and they understand everything. But trying to refrain from using things like, "You're good to go", or some examples that people who never grew up in the U.S. might not know about, such as, one of the examples I had done was, "I see where you're coming from", and everyone seems to know that, except for the immigrants.

Because, “What are you saying? I was sitting next to you; I was talking to you. What do you mean by you see where I'm coming from?” And those things, I think, people don't stop and think about, but once you say, what is the literal translation for this? And say, “Is this something, if I had heard it for the first time, something you understand?” And just taking that time to say, “Maybe this is not the most commonly used phrase.” And then, using a more direct language can really help the patients who are of limited English proficiency.

Dr. Lidia Schapira: You used the expression 1.5 generation, and I know that when we reviewed the article, some of us had never heard that expression. And then, you explained to us that this refers to those who came as teens, or young enough so that they were quick to learn and assimilate into the new culture, but sufficiently grown to really also be firmly rooted in the mother culture.

Tell us a little bit about where you are with this, and how this has shaped the way you've approached your life as a medical student, as a resident, and now, as an Oncologist.

Dr. April Choi: I think it's impossible to talk about my medical education without talking about how I was brought up. I was actually born in the United States but moved to Korea when I was less than a year old. And I stayed there until third grade when I moved to California for the first time, stayed until fifth grade, and I moved back to Korea until middle school, then I moved back to California to start high school, and I've been here since then. So, this moving back and forth, I think, did create a lot of confusion when I was growing up because the two cultures are very different, and the medical system is also inherently very different compared to Korea. And I come from a place where in Korea you could go see a doctor if you're sick, and when I was living in the U.S., our family didn't have health insurance.

So, the first time I saw an American doctor was when I was in high school. And at that time, my brother had dislocated his shoulder, and I remember my mom bringing him to the emergency department, University of California, Irvine. And at that time, she was very polite, she would say, "yes", and smile and nod to whichever the emergency doctor had told her about the dislocated shoulder. But I remember her always turning to me after he left, to say, "What about this? What about the medication?" But she didn't feel comfortable to interrupt this doctor who had come in, and ask about the things that she was worried about - this was her son. He had dislocated his shoulder for the first time. But for her to feel culturally uncomfortable to interrupt them and ask questions, and have all of her questions answered, I think really stuck with me.

Dr. Lidia Schapira: I hear a lot of emotion in your voice when you talk about this, and you bring up issues of safety for people who are vulnerable. How are you dealing with this now that you have so much power, as an oncologist whose patients are placing their life in your hands?

Dr. April Choi: Honestly, I feel blessed and grateful that I'm in a position where I can change things for the better. I'm currently invested in research looking at Asian-American disparity in cancer patients. And having that opportunity where I have the medical language and knowledge to explain things better for patients who are of Korean-American descent, I think is a very encouraging and powerful motivator for me to continue on. So, I think my career trajectory is for me to advocate for the, you know, Korean-American, as well as the other Asian-American patients who are undergoing the same situation that Yoon and my family were going through.

Dr. Lidia Schapira: It's a beautiful story that links your attachment to culture and family, and provides the inspiration that is now driving your career as a researcher, and somebody who really is going to use all their knowledge to advance this field. I imagine your family must be enormously proud, but let's just finish by talking a little bit more about this lovely gentleman, Yoon, and his need for jook, that you've told us is not porridge, is not oatmeal but is comfort food and the comfort food that you felt he needed. Tell us a little bit about that - in how food can provide solace, and all the efforts that you went to, to give that to your patient who you felt was really quite frightened.

Dr. April Choi: So, if you search jook and Google, or try to get additional information, they talk about it as if it's the same thing as congee, which is the Chinese version of rice porridge. So, jook actually isn't just made out of rice; it could be made out of combinations, or different proteins. Obviously, rice does play a main factor, but it could be made out of beans, for example, and other ingredients.

But the Korean thought is that if you're sick, you need something that's easy to digest and something that's been cooked slowly so that your body doesn't have to do the work. And one of the main things is the jook. We actually have many jook specialty shops in Korea, often close to different hospitals, for example. It's the main food that's served by the hospitals if you're in-patient, although you might have a lot of different Korean food when you're hospitalized here. I think my experience comes from the fact that if you're scared, you want something that you already know, or you're comforted by - almost like a safety blanket.

And when someone can't even get the basic food that they're used to eating-- if you're used to eating rice every single meal, and then you plop them down in a hospital that gives you toast for breakfast and eggs, and other ingredients that you're not used to, I don't understand how people can expect to feel at home. Is it just because someone says, "Make yourself comfortable"? It doesn’t mean that you have the opportunity to make yourself comfortable if the main food that you eat is not available? And that is something that I wanted to emphasize - that food we think is so easy to arrange for-- we have dieticians, we have nutritionists in the hospital, but we don't really think about patients' comfort that way. And I think it's something that I think about a lot when I'm seeing a lot of the GI patients here, it is a field that I'm interested in.

And for people to keep on losing weight, and for us to keep on asking, "Are you eating enough?" I wonder if that's enough because in Tufts Medical Center, where I'm fortunate to be training in, there's a very significant Chinese-American population. And anecdotally, or at least my experience has been that patients will say, "Oh yes, I'm eating a lot", or nod, and smile and say, "Yes". But if you ask the family members, they say, "Oh, they don't eat the things that they used to." And they don't tell us this because they don't want to burden the doctors with less important things.

But I do think this is very important, and it's something that we need to really talk about, and try to find ways that we can make them feel at ease, and comfort them while we're maintaining whichever treatment that we are giving for these patients.

Dr. Lidia Schapira: So, April, this has been a lovely conversation that reminds us of the importance of good communication, communication across cultures and barriers, and just taking the time to help our patients really feel safe and welcome.

April, we have time for one last thought.

Dr. April Choi: I do want to say that eventually, many years down the road in my career, I do hope to have a situation where instead of me having to explain Asian-American cancer disparity, that we have an opportunity to say Asian-American cancer diversity; that it's not a matter of someone getting less care, it's more important that we get different types of care - a diverse type of care that's catered towards Asian-Americans.

Dr. Lidia Schapira: Well, with that lovely thought, I will leave our listeners until next time. And I want to thank you for listening to JCO's Cancer Stories: The Art of Oncology.

Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio:

Dr. April Choi is a Hematology and Oncology fellow at Tufts Medical Center.

A doctor describes her 50+ history as a survivor of lymphoma treated with mantle radiation. Read the related article on JCO.org.

Transcript:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care, and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
The Arc of Therapy-- From Cure to Humbling Legacy, Gene Bishop, M.D.
In June 1965, at the age of 18, I sat in a room with my parents and heard an oncologist tell me that I had Hodgkin lymphoma. If I shared that diagnosis with people, he said, they would look at me as if I were dying, because almost no one with this disease survived, but I would. With breathtaking confidence, the oncologist said a new treatment, radiation, would cure me. In October 2018, at the age of 71, I sat in an oncologist's office as he told me I had stage IV non-small-cell lung cancer, presumably as a result of that radiation in 1965. He offered palliative therapy. His goal-- more good days than bad. He called me "our humbling legacy."
I reflect now on that arc, from optimistic cure through a mounting problem list of likely consequences of radiation, to the almost certainty that I will die of the treatment of a cancer I had in 1965. I received the best treatment there was in 1965, and I'm getting the best treatment there is in 2019, but I am no longer being promised a cure. Both my oncologist and I are living with the reminder that no treatment does only what we want it to do, and that one year's miracles may have serious consequences, even 50 years later. And although some of these may be known or theoretically possible, many are not even imagined until one, two, three, or many case reports begin to appear and random events turn into warnings and known consequences.
For the patient seeking cure and life, an unknown but potentially dangerous future is hard to imagine. Some new miracle will come along. Physicians waiting for data, recruiting patients for the next clinical trial, or facing pressure from patients for positive results can also be focused more on immediate results. They may minimize the known or unknown future. How will physicians be both wise and humble?
The first oncologist was right. I was cured of lymphoma. I graduated, went to medical school, and had a family and a full life. I shared the story with friends, patients, and colleagues when I thought it was appropriate or helpful. Look, I said to families facing radiation, I had radiation, and here I am, alive and well. A little hope never hurt anyone I never thought of myself as a cancer survivor on an ongoing journey. I thought of myself as a cure. And I certainly didn't think about the difference until many years later.
If oncologists were no longer interested in me, then cancer was over. There was no concept or field of study of adult survivors of childhood cancer. Certainly no physician, neither the oncologists I saw initially nor the internists who later followed me when the oncologists lost interest, raised the issue.
Why and when did I even begin to consider that I might be at some kind of risk? In 1979, 14 years after my treatment, the worst domestic nuclear power accident in US history occurred at the Three Mile Island nuclear plant in Pennsylvania. I was more than sympathetic to the nuclear disarmament movement. And although I understood that nuclear war and my radiation treatment were considerably different, I did begin to wonder if the treatment could have had unexpected consequences.
I began to ask questions of physicians, with very few answers. Thus began almost 20 years of symptoms and consequences of being in the earliest cohort, not part of any study, before the age when anyone could request, if it occurred to them, weekly updates from the National Library of Medicine on consequences of earlier cancer treatment.
In 1981, at age 34, I asked whether I should start mammograms early, and my internist asked the mammographers. "We don't know," I was told, "but it might be a good idea." In 1985, seeking answers to a persistent tachycardia cardiopulmonary testing and a Holter monitor showed a baseline heart rate in the 90s. I was told I was deconditioned and anxious. In 1986, a physician studying effects of radiation on the heart-- he had a seven-year follow-up at that point-- told me the only known effects was constrictive pericarditis, which I did not have. "Don't worry," I was told.
Both were correct. I was anxious, but my ectopy and tachycardia were not symptoms of anxiety, they were the cause of the anxiety. I was anxious about the effects of radiation. I never tried to be my own doctor. But only I looked through the lens of a radiation treatment survivor.
Not until 2006 did I find early consensus-based guidelines of which my physicians were unaware. In the late 1980s, I was denied life insurance because of the new right bundle branch block, but not until 2001, 36 years after my initial treatment, did a cardiologist name it radiation-induced heart disease. I imagined it as static rather than dynamic. Not only was my heart not static, but the entire field of radiation-induced heart disease was evolving. I didn't have a permanent scar, I had ongoing damage. And neither I nor my doctors had the evidence for where it was heading.
I found a cardiologist who focus on cardiac consequences of cancer treatment. When I mentioned that hiking in the Canadian Rockies and trekking in Vietnam had ceased to be fun, the cardiologist found critical aortic stenosis. My already damaged conduction system did not survive an aortic valve replacement, and now I had both a pacemaker and a new aortic valve.
In 2015, at age 68, I read a published report of abnormal exercise response in long-term survivors of Hodgkin lymphoma treated with thoracic irradiation. I recognized myself in graphic detail. No amount of training at the gym would get my heart rate below 90. That article appeared 50 years after radiation and 30 years after I first sought help, one of several sobering lessons in the length of time it can take to discover the effects of medical treatment.
The truth is, in my own therapy arc, I was lucky. Every consequence until the lung cancer was treatable with the promise of a good outcome. I saw the article recommending breast magnetic resonance imaging for those who had received mantle radiation, appealed my insurance denial, and found my breast cancer early. However, two medical oncologists, two breast surgeons, and three radiation therapists all had vastly different treatment recommendations for my situation, reflecting the murky state of knowledge on treatment of Hodgkin survivors. A huge thyroid nodule was benign, but out came my thyroid with a different small focus of cancer.
I faced each challenge, albeit with some depression and fear, with the knowledge that I would get better. Cure was still the operative word. In the arc of my disease, radiation had consequences, but they were not insurmountable. As I reached more than 50 years out, I think I breathed an inward sigh of relief. I expected to have progressive cardiac disease. I imagined I would develop congestive heart failure. I worried about lung cancer. It had been reported 40 years out. But there were few studies on 50 years out. I thought I was done with my cancers.
When I developed a sudden and persistent cough, I began to worry. I could hear gurgles high in my mid-chest, but my doctors heard nothing. I doubted the pulmonologist's diagnosis of cough-variant asthma newly-present in a 70-year-old. My doctors began gently suggesting what they do when a patient has unexplained symptoms. "Perhaps you are anxious," they said. The classically-trained psychiatrist noted he hadn't seen a conversion symptom in a long time, but thought I might never have really thought through what it meant having cancer at age 18. Several unexplained symptoms and normal computed tomography scans later, I contemplated what a non-physician would do. What if I weren't thinking like a doctor, but more like my fellow survivors?
Off I went to Facebook, an unimaginable resource in 1965. I typed "Hodgkin's survivors" in the search box, and up popped a closed group-- Hodgkin's Lymphoma Disease Survival and Late Effects, 1960s to Early 2000s. Here were 500 people from around the world who had received radiation, chemotherapy, or both. It was hardly a tidy cohort. Their treatments for Hodgkin's spanned the years from mantle radiation, to chemotherapy, splenectomy, improved imaging, and actual staging. As befits a social media site, they were seeking support, medical advice, and shared experiences.
I was one of only two survivors on the site who were more than 50 years post-treatment. Initially, I felt lucky, at least until the lung cancer diagnosis. The number of valve replacements, arrhythmias, pacemakers, and stents was extensive. Many had severe neck contractures from radiation. Breast cancer seemed to be an everyday occurrence. The question of prophylactic mastectomies frequently was raised. Cough, lung disease, and esophageal reflux with aspiration all appeared. I briefly let myself be reassured that my pulmonologist was correct, and my cough had a reflux component, even if I never had a classic reflux symptom and a gastroenterologist was doubtful.
If the medical world has been slow to recognize cancer survivorship, this non-random group has not. Many of them travel hundreds of miles to find survivorship clinics in various countries around the world. The more recently-treated ones had both the good fortune to benefit from the new field of cancer survivorship, but the bad fortune to be beset constantly by worries about what the future holds. As with much of the lay public, many believe that screening and early diagnosis are always beneficial, and are unaware that the evidence in our cohort is scant.
I found myself alternately fascinated, riveted, terrified, and reassured, but refrained from diagnosing myself from Facebook. I also knew I had found my peeps, a cohort more aware of their risk factors than much of the medical world. One woman expressed relief when her new oncologist said, "this is all our fault." Others chimed in they had never heard a physician acknowledge that.
My new oncologist had fancier words, "you are our humbling legacy." I am the living-- or perhaps I should say dying-- history of one of our more successful efforts to treat and cure cancer in the last 50 years. There are now numerous other efforts, especially to treat childhood malignancies. Awareness of long-term consequences, the concept of survivorship, and the concept of shared decision-making are but a few of the inflections in the arc of therapy. Many patients make difficult decisions choosing extremely toxic therapies that will extend life only months, with imminent consequences that are known. But many also make decisions on the basis of limited information, filled with hope.
In early 2019, should an American woman wait while the Food and Drug Administration continues to investigate textured breast implants, or imagine she lives in France where sales have been halted because of reports of an association with a rare lymphoma? What will be the effects of the successful immunotherapy in 10, 20, or 50 years? Of course, physicians are focused on near-term cure, yet they must also acknowledge the uncertainty regarding possible late effects of the very treatment that is now saving their patients' lives.
But if I am a humbling legacy, humility is needed. We need clinicians to provide guidance and information to patients as they find themselves in unknown and often frightening terrain, years or decades after completing their course of treatment. In my primary care practice, I often told patients I had left my crystal ball at home along with my magic wand. But I was usually referring to when they could return to work after a viral illness, not whether they would get a terminal illness 50 years later.
I tried to imagine my 18-year-old self, and the doctor peering into his crystal ball. "You will have symptoms no one will believe. You will happily marry and successfully have one child." As long as he has a crystal ball, I might as well learn everything. "You will develop heart disease and require an artificial valve and a pacemaker. You will develop three other cancers, two of which will be treatable, but the third, at age 72, will be the cause of your death. Would you like the radiation and cure we can offer you now?"
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Cancer Stories, the Art of Oncology Podcast, presents the essay, The Arc of Therapy-- From Cure to Humbling Legacy, by Gene Bishop, published online in Journal of Clinical Oncology, June 10 issue, 2019.
I'm Lidia Schapira, editorial consultant for The Journal of Clinical Oncology's Art of Oncology, and your host for Cancer Stories. My guest today is Dr. Gene Bishop, who is a retired general internist, and primary care physician and a clinical professor at the University of Pennsylvania. Dr. Bishop's essay, The Arc of Therapy-- From Cure to Humbling Legacy, addresses the personal and lived experience of a cancer survivor.
Gene, welcome to our program.
I'm so happy to be here. Thank you for having me.
We're absolutely delighted. And your essay is so inspiring, and also so educational. I wonder if you can tell us a little bit about what you wish to convey to the audience of cancer clinicians about the experience of being a long-term cancer survivor.
That's really an interesting question. Because one of the questions is how many long-term cancer survivors are still seeing oncologists. And to the oncology community, I want them to always have an open mind about possible effects of the medications they're using. I could see how it easily could become so exciting to find people in recovery, if not cured-- always a tricky word-- from new therapies that it's hard to think what it might be like 10, or 20, or 30 years down the line. And I think that just needs to be acknowledged.
I think the more difficult question is how to have an open mind about therapies people might have received years ago, and to sort out possible unknown effects.
This is such a challenge, and it is such an important point, I think, for all physicians-- not just cancer clinicians, but all specialists and all primary care physicians and generalists, because we may not know what to look for. And you have this unique experience of having being among the first in the cohort of very young patients who were cured by radiation. Tell us a little bit about what it was like for you as you were encountering symptoms which perhaps you thought were related to that therapy, but nobody really knew what to do with you.
Yes, and I think that that's terribly important. One thing to remember is I was young. I was 18 when I was treated. And I probably didn't actually realize the import of what was going on. My 96-year-old mother is still alive. And needless to say, now still facing the fact that her 72-year-old daughter will die before her. But she really thought she was going to lose me at age 18. But I never skipped a beat. You know, I got radiation, didn't get sick, never missed a day of college, and thought everything was behind me.
But once I became a physician-- which I don't think has anything to do with that, with my illness, it really had to do with the women's health movement of the 1970s-- once I became a physician, I noticed that I was having symptoms that didn't seem to me to be normal for a woman in her 30s and 40s. And I couldn't get anyone to consider that these could be an effect of radiation. They were right on board with, you're cured, that was a long time ago, and a seven-year follow-up somebody had. And they were way too willing, as many doctors are, to ascribe them to psychological symptoms.
Now I didn't expect anybody to know that, 30 years later, particular effects of radiation would be reported, but I expected people to at least have an open mind, and say, you know, we can't find anything now. Maybe this has to do with your treatment. Let's make a follow-up plan. And I think that's terribly important. And nobody I saw was an oncologist. The oncologists were done with me. I was cured-- until I wasn't.
And as I said, we don't have crystal balls. But one of the things that I learned from the Facebook group, which is quite an amazing place, is that people treated for Hodgkin's even much later than I am, and I presume other cancers, are still facing, from primary care docs and other doctors, "this happened a long time ago, it cannot possibly be affecting you now."
And I think doctors need to remember there's a lot we still don't know about the human body and what we're doing to it. And default should be, "this happened a long time ago, I don't know anything about this, but let me look into it." And that's not always the default.
You know, one of the things that struck me in your narrative is that here you are, 70-plus, a medical educator, and where you found your people was in an online community. You know, it was not exactly where I thought you would take a story.
Well, I'm going to modestly say that I have a lot of faith in myself as a clinician. And I just knew I didn't feel right, and that nobody was coming up with an answer that made sense to me in terms of explanations of various symptoms. And I thought, well, what do people do? Oh, they go online. So I searched Facebook, which is not something I-- I do have a Facebook page, but it says, "I don't actually use this page. If you're really my friend, you know other ways to reach me."
And I went on Facebook, and there is a closed group of Hodgkin's survivors. You have to apply to be in it. And it's moderated by a woman in the UK. And it was an unbelievable cohort. Of course, it wasn't, as I said in the article, tidy. Because it included people like me, who were treated only with radiation, before CAT scans, before staging. I've always been thankful that I missed the splenectomy stage.
[BOTH CHUCKLING]
I have my spleen. And for being such an untidy cohort, they had experienced many similar problems and were extremely well aware that they were lucky to be alive and that the treatments they had been given had serious long-term side effects. And although I had to refrain as a physician-- I basically didn't participate, I would say I was a lurker-- what I did do was post the previous article I have written, and I posted anything that I thought would be useful from the medical literature. I was not the only medical professional on the site. But when people say, gee, I'm having chest pain, what do you think I should do, let somebody else say, you should go see a doctor or you should go to the emergency room.
But an incredible number of people who had seen doctors and gone to survivorship clinics but also been dismissed as, "this can't have an effect." And I realized-- I always thought I was pretty special, and I realized that it was a pretty large community, particularly in regard to Hodgkin's, of successful cures but with was sequelae.
And what did you find in this community? Was it the connection with others or was it specific information? What kept you going back?
Well, after a while, I got kind of tired of it. Not tired of it, that's not the right word. It was became disturbing, actually, because of the seriousness of the problems. What I found in the community were, one, people were supporting each other. And two, I found other people who had unexplained cough, who-- at one point, a physician was trying to convince me that my cough was all due to reflux even though I'd never had a reflux symptom.
And I found many people who had shared some of the symptoms that I had had, which didn't make me think, oh, good, now I have this, but it made me realize that I was very far from alone, and that even I, who thought I had spent quite a lot of time learning about long-term effects of radiation, had not understood how many people were living with serious neck contractures, reflux so severe that they had to be hospitalized, chronic cough. It seems that because I had escaped them, I hadn't realized. And I'm not sure anywhere I had seen the collection of symptoms that you can see in this cohort.
So I didn't feel necessarily supported by the community. I wasn't looking for emotional support. But I was looking-- in the National Library of Medicine I hadn't found a good explanation for my symptoms. And so I thought, well, let's see what social media has to offer. Maybe somebody will have something that I can go back to my doctors with. I was astounded, around the world, by the community of survivors.
It's so interesting. Because through social media, we can actually find out so much about how patients and survivors experience their disease and their trajectory after we say goodbye, thinking that, as you put so nicely in your essay, that we're done.
I have a question for you based on one of the things you just said. And mentioned survivorship clinics. How do you think they are now helping patients who have similar stories to yours who are long-term survivors have they developed in the way that you anticipated? Do you think they're helpful? Well, that's a good question. And I can easily get out of it by saying I know nothing about it. Because in my own case, there were no survivorship clinics. And I was the only person who kept trying to think, gee, is this a problem that I'm going to have, or how do I think about this.
And so for instance, the University of Pennsylvania where I'm now being treated, has a survivorship clinic. But I've never been there, because I already, as a primary care doctor, have two oncologists-- I mean, I already have such a team that the survivorship clinic has nothing to offer me. So the most I know about the survivorship clinics is really from the Facebook group, where people find them quite helpful. Because a knowledgeable person is can actually look up and see who they are, what year they were treated, what treatments they received, and what they now know that they're at risk for.
So I think there's probably a good use to survivorship clinics. I think, as a former primary care doc, there's just no way I could know that about every treated cancer patient that I see and what the treatments they might have received.
So I think that survivorship clinics are probably quite useful, but I have no personal experience with them at all. I think if I were still in practice and I saw somebody who said to me, I was treated for childhood leukemia, or sarcoma, or whatever, I would refer them, at least for an evaluation, and then see them back and see what they thought. But I have no personal experience.
I think survivorship has gotten pretty trendy. And one of the interesting questions is, how do you even define a survivor?
So as we bring this interview to a close, I have one question for you. You end the story by saying that even if you knew then what would happen as a result of treatment, you would do it again. At least that's what I understood. Can you tell us a little bit about the emotional journey of being a cancer survivor.
Sure. I mean, of course I would do it again. I was 18, and I'm 72. I've had a life. But I think, for me, there was a turning point between thinking of myself as a cure-- over and done with-- and being a survivor. And I wrote about that a little in a Journal of General Internal Medicine article that's referenced in my article, called "Seeking the Proper Tense." I spent, I'd say, the first 20-something years just feeling like it was in the past, that whatever was going to happen, I could deal with, that I had really escaped.
And getting breast cancer-- which, by the way, was very lateral, and there was no agreement among my physicians whether I got breast cancer because I was a 60-year-old American woman or because I had had radiation-- getting breast cancer really hit me in a different way. And I said, oh, I could actually have a lot of problems, and I could have a lot of different problems than people who randomly get some other cancers. And I felt like I really had to make plans for the latter part of my life to think about what the consequences of this treatment might be. Could I continue to live in a three-story house? It was clear to me that I had ongoing heart disease.
And I made a transformation in my head between being a cure to being a survivor. I joined a writing group at Penn for cancer survivors. And before that, I never thought of myself as a survivor because I hadn't lost my hair or vomited, which I think is what a lot of people think of if you have cancer-- If you really have cancer then you have to undergo therapy that makes you ill. And none of that was part of my past.
But I realized that I was a survivor, and that something had changed in my body, and I would have to deal with it. And it's been very difficult. I'm very sad right now, you know? And it was hard to write the article.
I imagine. I imagine. Well, those of us who read the article and continue to learn from it appreciate that you did write it. We thank you for it. And we wish you also good health. And thank you so much for sharing your reflections.
You're welcome. I hope they are helpful to physicians. I really appreciated my oncologist-- his calling me "our humbling legacy" really sparked the article in a way. I'm far from cure at this point. Thank you.
Thank you for sharing your story. That was Dr. Gene Bishop sharing her reflections on being a cancer survivor and living with lung cancer. This is Lidia Schapira, your host for Cancer Stories. Join me next time for another conversation about the Art of Oncology.

Dr. Hayes interviews Dr. Breitbart on his research addressing psychiatric, psychological and existential adjustment as well as symptom control in advanced cancer.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

TRANSCRIPT

SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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DANIEL HAYES: Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insights into the world of cancer care. You can find all of their shows, including this one, at podcast.asco.org.

We have a special treat today in our podcast series in that I have the opportunity to interview Dr. William Breitbart. Dr. Breitbart is the Jimmie Holland Chair of Oncology at Memorial Sloan Kettering and the Professor and Vice Chair of the Department of Psychiatry at the Weill Cornell Medical College. And as far as I can see, Dr. Breitbart, you've never left New York City. But I will get the background. And you can tell us if you took a vacation or something one time outside the city.

Dr. Breitbart grew up in the Lower East Side of Manhattan. He went to Brooklyn College, graduated in 1973, then medical school at the Albert Einstein College of Medicine. And then he did his residency in internal medicine at the Bronx Hospital and trained basically at Memorial Sloan Kettering. Joined the faculty there, and has been on the faculty ever since.

He has a number of accomplishments, too many for me to really review it carefully. But he's been president of the International Psycho-Oncology Society and received their Sutherland Lifetime Achievement Award. He's been president of the Academy of Psychosomatic Medicine and received their Hackett Lifetime Achievement Award.

And on a personal basis, my brother was also the president of the Academy of Psychosomatic Medicine. So I'm very proud of my brother and equally proud of Dr. Breitbart. He really is responsible for a number of enormous steps forward in our field, including psychotherapeutic approaches for palliative care of patients with terminal illnesses, especially cancer.

He has been involved with what I saw you call, Dr. Breitbart, "hastened to death." I had learned it as assisted suicide. I'm going to ask you a question about that. I'm interested in your comments. And more recently, meaning-centered psychotherapy for the terminally ill And we'll talk more about that, too.

So in addition, I have asked Dr. Breitbart if he would also give us insights into Dr. Jimmie Holland's life and her career. Sadly, she passed away before we had an opportunity to chat with her. She was one of my favorite people in the whole world. And I think everybody that knew here said the same thing. So we'll get some insights for those of you who didn't know Dr. Holland from this call as well.

Before we start, Dr. Breitbart wants to declare that he's received honoraria from Novartis and has a consulting or advisory role with Novartis. Dr. Breitbart, welcome to our program today.

WILLIAM BREITBART: Thank you Dr. Hayes, pleasure to be here. Can I make just one slight correction? I actually trained in both internal medicine and psychiatry at the Bronx Municipal Hospital, which is the Albert Einstein College of Medicine, in New York City Health and Hospitals Corporation's Public Hospital. So I trained in both psychiatry and internal medicine, jumping back and forth between the two, out of a state of confusion.

And then I landed in Dr. Holland's fellowship at Memorial Sloan Kettering for a variety of reasons. The main reason was though that I had developed a thyroid cancer when I was a medical resident in the middle of my training. And then I went back to finish up more of my psychiatry residency training, I became the liaison to the Oncology Clinic at Jacobi Hospital, the Bronx Municipal Hospital.

I did consultations for cancer patients. I ran groups for cancer patients and also ran groups for the oncologists and oncology nurses. And I was trying to educate myself on the subject of psycho-oncology or psychiatric oncology. It actually hadn't been named yet in those days. And the only literature I could find were papers written in oncology journals by Dr. Julie Holland. And so that's where I knew where I needed to go to become more expert in this area.

That's the most superficial version of how I ended up at Memorial Sloan Kettering. I could tell you the more interesting version if you're interested.

DANIEL HAYES: Well, actually, what you just covered was my first question. I was going to say this is about you, not about me. But my brother also did training in internal medicine and decided to go in psychiatry, and ended up in psychiatry liaison. And I think that's what makes you two, and others like you, powerful, is that if you go to France and you don't speak French, you're not going to be listened to. And if you come to a bunch of oncologists, and you don't speak internal medicine or oncology, we're not going to listen to you.

And I think clearly to me, Jimmie Holland always knew what I did. And I think you have the same strength. I'd love to hear how you actually got involved with her. Yes. Please begin.

WILLIAM BREITBART: I agree with you actually about that comment. It's very helpful to have had the training in both medicine and psychiatry. And, in fact, we've trained a few fellows who've done oncology fellowships and then done our-- and a psychiatry residency and then done our psycho-oncology fellowship as well.

But the real story of how I ended up in this field starts in childhood, where a lot of stories start. But my parents were both Holocaust survivors from Eastern Europe, from Poland in particular. When the war broke out, my mother was 14 years old and my father was 17 years old.

And my father's family were all killed. But he ended up surviving, hiding in the woods. And he became-- Polish forest-- and he became part of a partisan fighter group, lived in the Polish forest. And one day he went looking for food and broke into this farmhouse. And as it turned out, my mother and her parents were being hidden by a Catholic woman, who hid them in a hole underneath the stove in her barn.

And my father broke into this farmhouse and discovered my mother and my maternal grandparents. It turned out they were related. They were second cousins.

My father said, you can't stay here. It's not safe. You should come into the woods with me and 150 other people. My grandparents were too afraid to go. But they let my mother go. So at the tender age of 14 and 17, my parents were hiding in the Polish forest, where they lived for about three years, hiding from the Nazis, and then Ukrainians, and all sorts of people who were interested in killing Jews.

And they finally, after the war, crossed over to Germany. They actually found my grandparents alive. And they crossed over the border to Germany, went into this displaced persons' camp outside of Munich and got married there. And then came to the Lower East Side in late 1949, early 1950.

And I was born several years later. And I grew up in this home on the Lower East Side, as you pointed out. And I grew up in a home where the Holocaust also lived. I lived in this home where the Holocaust was in every room-- didn't have a room of its own. It was in all the rooms, on all the walls-- and all the pictures that had been saved of my family, that had perished, on all the religious articles that might have been saved, et cetera.

So I grew up in this environment where I understood at a very early age, maybe four or five years old, that death and suffering were very real. And that we all lived in this space between life and death. My mother would ask me every morning-- when she gave me breakfast, she would ask me the question, why am I here?

And the full question really was, why am I here and everyone else is dead? Basically, what evolved out of this was the transmission of this responsibility or I guess a burden-- for me, it was an inspiration-- for me to accomplish something of such significance and impact-- in the world of suffering in particular-- in the arena of people who suffer in the face of death. And it's going to be up to me to achieve something of such significance that my parents would be able to-- my mother would be able to turn around and say, well you see we had to survive because if I hadn't survived, there wouldn't be Bill Breitbart in the world.

[LAUGHTER]

So that was the mission. That was the burden. That was the inspiration. And I wasn't fully cognizant of it. But I was traveling this journey-- this route that took me through college, and loving science and poetry, ending up in medical school, thinking I'd be a psychiatrist, but then falling in love with medicine. Loving both psychiatry and medicine.

What I realized what fascinated-- what fascinated me was how a human being can live a mortal, finite life. How do you-- as a person who develops a life-threatening illness, how do you continue to live? How do you have the strength, the courage, to keep on living? And what gives you purpose and meaning?

And so I got myself to Sloan Kettering by reading the work of Dr. Jimmie Holland and Dr. Massie. And I found myself at Memorial. I put myself in a place, with a mentor-- a group of mentors-- a place where I would breathe the same air of my patients, who were breathing the air of a human being confronting death, confronting the real prospect death being closer than-- closer than it was farther away. So that's how I ended up at Memorial. That's the real story.

And I went to Sloan Kettering to do a fellowship, just to become a good clinician. I wanted to be a clinician. I never had the expectation of being a clinical researcher or an academician. I never had the ambition or aspiration to be an academic, a teacher, an advocate; never thought to be a professor of anything. I never thought I'd write books, or scientific articles, or become president of organizations, et cetera.

All that happened because of my exposure to Jimmie. And my interest in research ended up being a result of one conversation that I had as a fellow. Dr. Holland, who was supposed to be my supervisor-- she's deceased now-- she was my inpatient supervisor-- my outpatient, inpatient supervisor. So we made rounds one day, which was very rare. But we made rounds one day. And I was the liaison.

I was very fortunate enough to be the liaison to the Neuro-Oncology Unit and to the Pain Service at Memorial, which were both within the Department of Neurology. When Dr. Holland was recruited to Memorial Sloan Kettering in 1977, it was by the chair of the Department of Neurology, Dr. Jerome Posner-- Jerry Posner-- who recruited both Jimmie to be the Chief of the Psychiatry Service and he recruited Kathy Foley to be the Chief of the Pain Service.

So I basically held on to these two meteoroids. Jimmie Holland and Kathy Foley, those are the two people who helped-- helped pull me along the road. So on the Neuro-Oncology Unit, I had done a consult on patient with brain tumors, on high-dose steroids. And he had a severe psychosis.

And I asked Dr. Holland, why is it that these patients on steroids develop these neuropsychiatric syndromes? They develop depressions. And they can get delirious, and psychotic, and manic. And this was the advice that my mentor gave me-- Dr. Holland gave me-- which turned me into a scientist.

And her response was, well, gee, Bill-- in her Texas twang-- well, gee, Bill, I really don't know. I really don't know. I guess you'll just have to go figure that one out yourself.

[LAUGHTER]

And that's what I ended up doing. I then pursued figuring it out myself. And that's what I did for the next 30 years, trying to figure out clinical problems-- when the AIDS epidemic exploded. My first research study was to study looking at patients with epidural spinal cord compression, those who had high grade versus lower grade compression. One group got high-dose steroids, the other didn't. And I did a comparison study of psychiatric syndromes in both populations.

I was at Memorial when the AIDS epidemic exploded. And so I started to do studies of delirium. I did the first double-blind randomized controlled trial of neuroleptics for the treatment of delirium in the AIDS population because they all got demented and delirious.

I did the first studies of pain in HIV. I did the first studies of desire for hastened death in patients with advanced AIDS and in patients with advanced cancer. And then I started to do a lot more work in inflammation and depression in pancreatic cancer patients.

And eventually, everything kind of culminated. As I evolved from being a psychiatric oncologist to a psychiatric oncologist and palliative care clinician, that kind of bridged the two worlds of psychopharmacology and palliative care. And I started really looking at issues of desire for hastened death and the loss of meaning. And then developed interventions for meaning, which we call meaning-centered psychotherapy, which has been a real advance I think in our field.

DANIEL HAYES: You must have been Dr. Holland's first trainee at Memorial.

WILLIAM BREITBART: Well, her story-- basically, she was this young country girl in Nevada, Texas. She grew up on a farm, a cotton farm apparently. She was most influenced by the country doctor who would visit when people were ill. And when he passed away, he gave her a set of medical books, which inspired her.

And she told her family, I think I want to be a doctor. And they said, well, gee, that sounds unreasonable, Jimmie. But whatever you feel like doing, go ahead.

She ended up going to Baylor. And I think she was one of only three women in medical school class at Baylor. She started her residency I think at Baylor as well.

And then eventually, she got married. Her first husband died tragically. I believe it was a suicide, which I think got interested in psychiatry.

She ended up, I think, doing her residency at-- finishing her residency at MGH, along with Tom Hackett, people like that. And somewhere along that route, that's where she met James Holland. So James and Jimmie were, as you say, a power couple.

James told me that Jimmie was his secret weapon, his secret power. But Jimmie told me the exact same thing about James. I think they fed off each other in terms of creativity and ideas.

So when James moved to Roswell Park, I guess, Jimmie started a special clinic. And she called it "special" because nobody would come to a psychiatry clinic. But they would come to a place that was special because it made them feel special.

And I guess it was around that time that James started collaborators-- CALGB. On the drive to work one day, Jimmie said, you ask patients every kind of question, like how many bowel movement does he have? You're very invasive in your questions. But you never ask them how they feel.

And so she insisted that James do something about that. And so in order I guess to not get nagged on the car ride every day, he started a quality of life committee in CALGB. And Jimmie chaired that for quite a while.

Eventually, I think James went to Mount Sinai. And Jimmie came along. And she worked at Albert Einstein-- College Hospital-- at Boston College of Medicine. And she was there with actually a bunch of pioneers of psychosomatic medicine. There was a guy named Herb Weiner, and Sig Ackerman, and Jim Strain, and Myron Hofer. These are very important names in our field of psychosomatic medicine.

Jerry Posner at Memorial, Department of Neurology, was looking to bring psychiatry into-- consultative service to Sloan Kettering. And Jimmie often says they couldn't get Ned Cassem from MGH. So they picked her in second tier.

And in 1977, she came there, along with a resident who graduated from Einstein, Mary Jane Massem. And the two of them had an office, with a card table-- as she described-- and a stack of index cards with the patients on them. And they set about starting a consult service.

So in '77, she was the chief of the psychiatry service. And then about '78 or '9, a clinical fellowship was established. The NIMH had an initiative at that point to develop consultation liaisons, psychosomatic medicine fellowships around the country. And so she benefited from that initiative, and started a fellowship. That continued through '78 or so.

And there are a couple of classes of fellows before me. I came to do the fellowship 1984 to '86. And it was during my fellowship, I think, that Jimmie and a woman named Julia Rowland, a psychologist, who's at the Smith Center now-- but was around the NCI's survivorship program for a long time.

DANIEL HAYES: I actually worked with Julia at Georgetown for five years.

WILLIAM BREITBART: At Georgetown, exactly.

So she and Julia wrote the first-- edited the first textbook of psycho-oncology. It was called the Handbook of Psychooncology. And that's the first time I think the term "psychooncology" was used. I think it might have been 19-- late 1980s. It might have been 1989 or so that book came out. And the term psychooncology was not hyphenated at that point. There was no hyphen between the two O's.

Jimmie asked me to write about six chapters. I knew a lot about delirium. I wrote that chapter. I knew a lot about suicide and cancer, which was an early interest of mine. And I knew a lot about neuropsychiatric issues and AIDS.

But I didn't know very much about neuroendocrine phenomena that caused neuropsychiatric syndromes or the psychiatric aspects of head and neck cancer. I said to Jimmie, I don't know anything about these subjects, Jimmie. Do you think I'm the person to write this chapter?

And she said to me, well, Bill, there are no experts in the world in this field.

[LAUGHTER]

So after you write the chapter, you will be the expert. So that was the philosophy.

And so as a mentor, I would basically say the greatest thing about her as a mentor was that she gave you the confidence that you could achieve whatever you wanted-- whatever you were driven to achieve. She had that faith in you. The idea was that the only person who really had to believe in what you were doing was you. And if it was important to you to find the answer to that question, that you would be able to do it.

She had a knack for finding people who were very driven, who joined this mission. It was really a mission. It was a calling to provide the human side of cancer care, to provide whole person care, to take care of the person who had cancer while they were going through all the cancer treatments. And the combination therapies that James Holland had come up with.

DANIEL HAYES: Two stories about Jim, who I had more association than with Jimmie. Although Jimmie told me the thing she tell you, which is you got to figure out what you want to do. And then you'll be great at it, because I wasn't sure.

But with Jim Holland, two things. I was the very young guy in a field to be. And I was named chair one of the committees. And he was sitting in the back.

And I was talking about, well, we need a statistical plan, and that sort of thing. And in the back of the room, as only he could do without a microphone, "Well, Hayes, if you need a statistician, it's probably not worth doing."

And other is, I once asked him, between you and Dr. Frye, who was my boss, Dr. Frye White-- the three guys, who actually came up with the idea of combinational therapy? And I might as well have let a fuse to a bomb because he was-- "Well, I did. I was there before they did. They came in. They were in the minority."

And he sent me the protocol. That was David. So to be sure I understood that he had written it before those guys got there. He was quite a character.

And I have to say, your comments about Jimmie, and being married to Jim, were like oil and water. It's unbelievable to me that they actually had a very loving, long-term relationship. She had five children with him, who are all accomplished in their own right.

WILLIAM BREITBART: Yes, they are.

DANIEL HAYES: And they just they just managed to make it work because he could be hard to deal with. But everybody loved him because of it.

WILLIAM BREITBART: Yeah. I think the secret ingredient there is dedication. They were both people of great dedication and commitment. And they were committed to two things.

They were committed to the work they did. And they were committed to each other and their family. And so I think that was the secret-- the secret ingredient.

DANIEL HAYES: There are a number of things in your own career that struck me as I was going through it. That one of my own interests would be your work with hastened death.

And again, I actually wrote a little sort of term paper kind of thing on this. And it was called assisted suicide. And I think we're talking about the same thing. Talk more about that, and what you've been involved with, and where you think that's going.

WILLIAM BREITBART: Right. Well, my interest in that all started during the AIDS crisis, the AIDS epidemic, in the mid-'80s to mid-'90s or so. And I was right in the thick of it, in Manhattan, in New York City.

And Sloan Kettering had a large population of AIDS patients, because of their interest in Kaposi's sarcoma and lymphomas. And they ended up taking care of a lot of patients. And I saw a lot of patients.

And I was that age-- I was often the age of the patients-- many of the patients who I was treating. It was very difficult work, but very inspiring work. You really felt like you were doing important work, obviously.

And because of many of the patients were younger men, men in their 30s, who I could relate to in many ways-- like you, I'm sure there are many patients that you treat. There are some that you feel closer to, you identify a lot more with, right. And these were-- that was the case here.

And at the time, I was treating patients with AIDS. And there was no treat-- there was no therapy at all. And people were dying very difficult deaths.

And I had many, many patients who asked me if I could help them die, if I could assist them in the suicide, could I prescribe their medicine, could I somehow hasten their death? And so for me, it was a clinical problem. What do I do? How do I understand this? What drives this desire to hasten your death?

I knew it came out of a sense of despair. I knew it came out of a distress and a sense of despair. But at the time that this was happening, clinically there was also a big debate in our society about legalization of assisted suicide. And, in fact, I think that was the Supreme Court case of Vacco versus Quill, which was also being adjudicated at that time. And states, like Oregon, were starting to have a referendum about whether to legalize these things.

So I thought, does one create policies based on popular opinion, or whatever, or a public opinion? Or do you create policies by understanding of the problem and that's informed by research? So I thought I needed to understand this.

If I was going to be helpful as a psychiatrist, in this kind of a setting. And it came up occasionally with cancer patients, too. But it was just so dramatic.

And it confronted me for the first time, mainly during the AIDS crisis. I felt I needed to understand it more, so that I could know how to be helpful or useful. Was I going to be able to eliminate the suffering? Or was my only option to eliminate the sufferer?

And so we set about doing a set of studies, both in terminally ill AIDS patients and terminally ill cancer patients. And I actually developed and validated a scale that measured desire for hastened death. It's called the Schedule of Attitudes towards Hastened Death.

Up until that point, people didn't really have a way of measuring it. They just asked the patient, yes or no, do you have-- or they might qualify it on a 0 to 4 scale or something.

And so what was really interesting-- and one of my early fellows, my first fellow, the first surgeon attending from oncology, Chasnoff, who went back to Canada-- Winnipeg. And he starts to do a study. He did studies around the same time. But he didn't have a validated measure.

But we ended up finding very similar things. As it turned out, about 40%-- 45% of folks who had high desire for hastened death, had a depression. About 17% of patients that had cancer-- we'll stick to the cancer data. About 17% of cancer patients have a high desire for phase. These are patients with advanced cancer, in a palliative care unit, or a hospice, whatever. And about 45% of those patients have a depression that was undiagnosed, untreated.

The other factors that seem to contribute to desire for hastened death were things like lack of social support, uncontrolled pain, and severe physical debilitation. So I said, well, we can treat pain. We can increase social support.

I gave a presentation one day at-- Kathy Foley had worked with George Soros and the Open Society Institute, to develop something called Project on Death in America. And I gave a talk to the board of the Project on Death in America. I was in the class of the first faculty scholars of Project on Death in America. It included a lot of people who are at the forefront of palliative care these days.

But I gave a talk on this, on patient death. And one of the ethicists in the room, a famous ethicist, asked me, well, what happens to desire for hastened death if you treat the depression? And before answering that question, I said to myself, make a mental note. That's your next ROI grant, Bill.

And so what I did after that, is I wrote several grants and did two studies looking at what treating depression in patients with high desire for hastened death. And I did both in AIDS and cancer patients, terminal cancer patients, two different studies.

As it turns out, if you treat-- if someone who has high desire for hastened death and they have a depression, and you treat the depression, 90% of those patients, when their depression remits, the desire for hastened death remits.

But there was still this segment of population of advanced cancer patients, were not depressed, did not have uncontrolled pain, or lack of social support. There were about a 40%-- 35%, 40% of the group, I didn't have the element, the factor that contributed to this desire for hastened death. So I figured there's something there that I haven't found.

So we went back and did further studies. And we looked at other variables, like anxiety, hopelessness, loss of meaning. And what we discovered was that hope of hopelessness and loss of meaning were independent and synergistic factors that contributed to the desire for hastened death, and made up an additional 30% of the so-called variance. So between depression and hopelessness, independent of depression, and loss of meaning independent of depression, you could account for about 85%, 90% of the reasons why patients wanted to desire for hastened death.

Based on my research and the research of others, there's still about a 10% group who are probably not in great despair. But the issue for them is, I live my life in a pretty authentic way. I've been able to control how I live my life. I should be able to. And I want to control the circumstances of my death. And they're not impaired by depression or anything like that.

But when we had the findings of hopelessness and loss of meaning, I said to myself, OK, now I've got to find an intervention for loss of meaning and hopelessness. And I was looking for a drug. I went through every page of the PDR. And there was no drug for loss of meaning or loss of hope.

So I had to turn to psychotherapy. Our CL psychiatrist-- you know, psychosomatic medicine psychiatrists, we like to give drugs. If there's a drug solution, we've got it. I'm your guy. So I had to force myself to turn towards psychotherapy rather later in my career, after doing all of these stimulant trials for fatigue and things like that, and other pharmacological trials for pain-- neuropathic pain, et cetera, delirium trials.

There I was, starting to figure out what kind of psychotherapy can I develop to help enhance sense of meaning and hope? And that's when I turned to, ironically, a Holocaust survivor named Victor Frankl-- and turned to the work of Victor Frank, who wrote the book, Man's Search for Meaning.

His big idea was that meaning is a primary motivating force for human behavior, similar to the idea of libido, and instinctual drive, and things like that. He thought meeting was another important drive. "Better" instinctual, he called it.

And he thought that there were predictable sources of meaning that one could tap into. And so we basically developed-- just sat down in a room with a couple of my fellows. And we hacked out a seven-- or at the beginning, it was group intervention. So it was an eight-session intervention. And then we developed an individual format, seven sessions.

And we basically developed this brief, structured psychotherapy that involved teaching patients the importance of meaning, both didactically and experientially; teaching them the various sources of meaning; and relating it to their cancer experience and living with cancer. And the whole purpose was to be able to get through cancer, and even facing death, by sustaining a sense of meaning for as long as you possibly could.

And that's what we called meaning-centered psychotherapy. I ended up doing four randomized-- NIH-funded, randomized controlled trials of both individual and a group format. And now we have a-- we're in the seventh year of an R25 training grant. We're training a national and international cohort of clinicians to provide meaningful psychotherapy in the manuals and textbooks that are published.

DANIEL HAYES: I'd like to segue this--

WILLIAM BREITBART: [INAUDIBLE], I designated it as a evidence-based intervention for palliative care.

DANIEL HAYES: Well, I'd like to segue, that as you were talking, most of people listening to this are probably medical oncologists. And my impression is, we don't get a lot of this training that you're talking about. And the people you're training, they're probably a psychiatrist, not a medical oncologist. How have you translated that over to our world?

WILLIAM BREITBART: Now, so actually the people we're training-- a few psychiatrists, not too many. We train psychiatrists, social workers, nurses, nurse practitioners, oncology nurse practitioners, oncology nurses, oncologists, chaplains, palliative care docs. We're expanding the training. And it's quite simple.

And it's actually-- but we're working with a group to develop this into a digital app. It might be able to be prescribed by oncologists so that you don't even need a therapist.

DANIEL HAYES: Are you in the weeds with the medical oncologists at Memorial, at Sloan. I mean, do you make rounds with them and help train them?

WILLIAM BREITBART: Yeah. Jimmie started out with one psychiatrist. By the time the Psychiatry Service became a department in 1996, I think there were 12 psychiatrists and psychologists. And as of last count, I think we have 43 faculty, 25 psychiatrists and the rest psychologists, and around 200 staff, including research staff, and research faculty, and psychiatry services. So I took over as chief when Jimmie became the first chair in the Behavioral Sciences Service. And we had a cancer disparities in the Immigrant Health Service. So it's grown quite a bit.

And all of us, we work in a sort of a disease management embedded model. So I originally was the psychiatrist for the Neuropsychology and Pain Service, and moved to the hepato-pancreato-biliary disease management team. But all of my psychiatrists and psychologists are embedded in the Breast Center, and in the GI group, hepato-pancreato-biliary groups, and hepato-neck, and thoracic, and all that. So we're all interacting there.

DANIEL HAYES: How do you translate that outside of Memorial in New York? I mean, most oncologists don't have access to those kinds of resources. And you've got to have thought about that.

WILLIAM BREITBART: About 1996, the National Cancer Center Network, the NCCN, got established and started developing guidelines. And so they asked Jimmie to head up of their guidelines for distress. And I was part of that group, and still am. And what came out of that was screening for distress, using a distress screening tool.

DANIEL HAYES: The distress thermometer-- the distress thermometer.

WILLIAM BREITBART: The distress thermometer, that's exactly right. And that came out of the pain work. The pain guys had the 0 to 10 scale. We didn't want to rip them off too badly. So we didn't want to do the 0 to 10 visual analog scale. So we had to come up with a different metaphor. So we called it "pain throughout."

So the Distress Screening Commission on Cancer, I think, accredits cancer centers through either the Academy of Surgery-- Surgical Oncology or something like that. They mandated that for a cancer center to get accredited, you have to have a distress screening program. And if you have a distress screening program, then you have to have people who respond to these algorithms that get developed for people who they identify with high distress.

So as a result of that one move, that one move of establishing distress stress as the sixth vital sign, which was Jimmie's idea, and developing distress screening, you now have-- every designated NCI-designated cancer center has to have a psychology program of some sort. Now, a lot of them aren't as big as ours. Some of them basically involve a half-time psychiatrist, a chaplain, a psych nurse practitioner, and a couple of social workers. But every cancer center has psycho-oncology present in it now as a result of that.

DANIEL HAYES: I was having dinner one time with Jim and Jimmie. And she said, you two know the blood pressure, the temperature, the weight, pulse. But you have no idea, she said, how they feel. So it wasn't the last time she asked Jim on that question.

And I went, what do you mean? She goes, you need a distress thermometer. She'd already published it. Of course, I didn't know that-- and pulled it out of her purse. And so she had to show the distress thermometer.

WILLIAM BREITBART: That's correct. That's correct. That's correct.

One of the big problems is when Jimmie started-- and you can attest to this-- that in the beginnings of oncology, it wasn't always the case that patients were told exactly what they had. Cancer was very stigmatized. The only thing that's more stigmatized than an illness like cancer is mental health, right. God forbid, you should have a problem with depression, or coping, or panic, or something.

DANIEL HAYES: It's a sign of weakness.

WILLIAM BREITBART: A weakness, moral weakness. Actually, we've come a long way in terms of truth telling and being transparent. And my patients now know exactly all the genetic mutations of about the tumor and stuff like that. They know everything. And they even know how their tumor is-- mutations are evolving and changing over time.

But cancer was-- the idea of needing psychosocial counseling-- psychiatric help, psychological help, it was very stigmatized. So even the word "distress" was chosen out of a concern to not stigmatize patients.

DANIEL HAYES: I will tell you that when-- I was at the Dana Farber. And there was a push for the Dana Farber to develop its own hospice program. And Dr. Frye, who was physician-in-chief, absolutely drew a line, and said no way because that means we've given up on those patients. We're not going to have a hospice program at Dana Farber because we don't want patients to think they're coming here to die.

And I remember thinking that some of them do. And it would be very helpful if we had a way to help them figure it out. And I have to say, in preparing for this podcast, I've read several your papers. And thought, God, I wish you'd been at the Dana Farber when I was there. Or I wish I'd been at Memorial to get to work with you.

But you can see I'm kind of tying things up here. Because I could listen to you for hours,but But we only have 20 or 30 minutes. And this has been terrific.

WILLIAM BREITBART: I appreciate the opportunity.

DANIEL HAYES: I'm sure our listeners will say, maybe-- I wonder how we can get him to come speak to our program. But I already wrote down here, we're going to invite you to Michigan.

WILLIAM BREITBART: Well, in this era of Zoom-- in this era of Zoom, I'm a very cheap date because all you have to do is just connect me by Zoom. You don't have to pay for the air fare or anything. I go everywhere.

DANIEL HAYES: I want to thank you for lots of reasons. One is for filling our listeners in-- many of them are young-- about who Dr. Holland was and what she did. Because we all owe her an enormous debt of gratitude for the contributions she made-- and you personally, as well.

So thank you for taking your time to speak with us. And we really appreciate it. And I hope our paths cross again in the near future. Thanks a lot.

WILLIAM BREITBART: Absolutely. Thank you so much. It was my pleasure. Appreciate it.

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DANIEL HAYES: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or a review on Apple Podcasts, or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

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Listen to ASCO’s Journal of Clinical Oncology essay, “But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care,” by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented.

TRANSCRIPT 

Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805)

For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit.

Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him. 

For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different.

While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions.

Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant.

 When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients? 

I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one’s disease trajectory.

Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload.

 As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two. 

While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities.

Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community.

There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions.

There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter.

The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections.

As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, “‘But Where's My Doctor?’: The Increasing and Relentless Fragmentation of Oncology Care.” 

At the time of this recording, our guest has no disclosures.  

David, welcome to our podcast, and thank you for joining us.

Dr. David Mintzer: Thank you for the invitation, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about. 

Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing.

Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer. 

So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this?

Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down. 

Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that?

Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff. 

But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make. 

Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable? 

Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years.  

Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer.  

This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out.

Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners?

Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly.

Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that.

Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything.  

We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss.

Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in? 

Dr. David Mintzer: Well, as you say, there's both benefit and loss involved with this and it does make our lives easier. If you're seeing relatively healthy outpatients month after month in the office, you get to feel oncology is not so bad and you can kind of put that two-week hospital rotation when everybody's in the ICU and having multiple unfixable problems and poor palliation behind you. So you can almost kind of go into denial. And it does make your quality of life easier to be able to just go to the office and go home most weeks of the year. 

How are we going to deal with this going forward? I mean, we do have to make the effort. I don't think it's going to go back. I don't think writing this article is going to change the way medicine is structured. This is a more efficient way and in some ways, it may be safer and more high reliability, which are kind of the watchwords. So I'm worried. I don't know where it's going. I think it is going to be a little less personal. But my point is we have to be aware of it and in doing so make the time we have with patients more impactful, be a little bit more aware of our need to support them. Maybe if you're not at the hospital every day, go over once or twice a week, or certainly when there's a big change in event. 

Dr. Lidia Schapira: Do you think we could use technology to sort of stay in touch and pay a social visit via FaceTime? Or remain connected to our patients, even if it is in a social function, but somehow, for their sake and for ours, remain connected when they're in hospice when they're hospitalized. But we're not the attending of the month. 

Dr. David Mintzer: Certainly, the way we communicate has changed. I remember being a young attending and I was working at a small community hospital, and one of the surgical attendings would just call their patient on the weekend on the phone, but wouldn't bother to come in. And I thought, my gosh, that's terrible. What kind of impersonal, awful medical care is that? But indeed, now, calling or more likely, texting, communicating, emailing with patients may work. 

What's coming with virtual or augmented reality or whether EPIC can eventually just plant a chip in our brain and we can all be online all the time, I don't know. But yes, any type of communication helps. I've often said that there's nothing like an unsolicited phone call to a patient to encourage them. Just, “Hey, you didn't call me, but I'm calling you. I was thinking about you. How are you doing?” So, yes, staying in touch by whatever means, I think can be greatly beneficial and mean a lot to the patient, even if it's a brief text or phone call.

Dr. Lidia Schapira: Yeah, even encouraging your trainees if you have residents or fellows working with you to go with you to that unsolicited visit or participate in that, I think that sort of would model the kind of behavior that we would want if our loved one is the patient, right? 

Dr. David Mintzer: For sure. 

Dr. Lidia Schapira: And that's always a good question because what we hear from patients is how much they value and love their oncologists when there is a strong connection. So let's perhaps finish the conversation by going back to Michael, your patient. How did you and Michael resolve this?

Dr. David Mintzer: Honestly, we haven't resolved it. So when he's in the hospital, he's now cared for by whoever's on service at the time. Fortunately, he hasn't been in the hospital lately, but I will make an effort to go over and stay in touch with him.

Dr. Lidia Schapira: I'm sure Michael would appreciate your presence.  

Are there any other thoughts that you would like to convey to our listeners or readers? We have dealt with some of these futuristic issues in Art of Oncology before, including one essay I remember was published years ago where there was sort of this very impersonal imagining of what it would be like for an oncology patient to basically be seen by a series of robots along the chain without this human connection. And it was really terrifying to read. So thank you for reminding us about what is lost for us as well as what is lost for patients, something that we all need to go back and revisit, I think, as we think about the future. Any final thoughts, David, for listeners?

Dr. David Mintzer: So as a physician who's getting close to the end of their career, I don't want to come off as just protesting against change. We need change. You know, change is crucial, but I think it's not really been clear to a lot of people how much this has been eroded over time -  that our direct contact and the fragmentation has impacted us and our patients and other caregivers. And this separation between inpatient and outpatient, I think, is becoming steeper. Our palliative care nurses used to go over to the hospital and see the inpatients as well as the outpatients, or our physical therapists, or our nutritionists. Now everyone is divided. I still think it's a great job. I love caring for patients. I love the teams that I work with. And as medicine gets better, though, we just have to be on guard to stay in touch with our patients and our feelings. 

Dr. Lidia Schapira: I really appreciate your perspective. Thank you so much for sharing it with us.  

And until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO Shows at asco.org/podcasts.

 The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes: 

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. David Mintzer is a Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. 

Additional Reading: 

Ars Brevis, by Dr. George Sotos

A tale of two mothers—one who has cancer, and one who is her oncologist.

Read the related article "Spring" by Melanie Seal on JCO.org.

In January 2017, while completing his residency, Dr. Colt Williams found himself taking on a second life-changing role when his 65-year-old mother was diagnosed with treatable cancer. The problem? She did not want to live. In this episode of Cancer Stories: The Art of Oncology, join Dr. Williams on his journey to navigate the intersection of oncologic, mental health, and end-of-life care from the dual perspective of physician and family member.

TRANSCRIPT

Narrator: My Mother's Last Lesson, by Colt Williams, MD (10.1200/JCO.21.02382)

In January 2017, my 65-year-old mother was diagnosed with treatable cancer. The problem was that she did not want to live.

Her mental health had declined precipitously after losing my father 8 years before, and her grief proved insurmountable. She had been a functional alcoholic for most of my life, and commonly smoothed over the roughness of a long day with half a bottle of whiskey. Growing up, alcohol had been ubiquitous to the point of banality, yet she was nonetheless able to lead a very successful life. But the silence of my father's absence was deafening, and her few moments of relief were only ever found at the bottom of a bottle. Her life came apart at the seams as she had stopped working, lost contact with most of her friends, and rarely left the house. Then, after years of limitless sorrow, when she was told she had advanced, but treatable squamous cell carcinoma of the tongue, she wanted to allow it to end her life.

Despite a high chance of cure, my mother saw her situation as both cause and justification to end her life. Why pursue a painful and disfiguring treatment to save a life already devoid of light, companionship, or love? She argued that she had already lived a full and rewarding life, and without my father at her side, her existence had become a shell of its former self. Her advanced directive had stated “Do Not Resuscitate” as far back as my father's initial entanglement with cancer, nearly 10 years before. Long before any of these immediate issues arose, she had made it clear that, “When it's my time, it's my time.”

Her treatment team was clear that if she received the standard treatments, her probability of survival was excellent, but that the journey would be grueling. Removing a third of her tongue would likely leave her with permanent speaking and swallowing difficulties. Radiation to her mouth and throat would cause severe inflammation and pain. A temporary feeding tube would pump tasteless, khaki colored goo directly into her stomach to bypass her swollen mouth and throat. She was assured that she would be supported by an interdisciplinary team and given any, and all, measures to ensure her comfort.

She asked what would happen if she chose not to pursue treatment. Her oncologist shifted on his stool, his arms crossing, and his speech slowing. I projected my own thoughts and discomfort onto his change of posture, “Why are you asking him that? It's treatable! Tell her, make her fight!” Her oncologist warned us that her cancer had the potential to slowly rob her of her ability to speak, eat, swallow, and eventually breathe. Even with treatment, there was still a chance she could end up in the same situation if the cancer did not respond or if it came back later. All I could think was “at least we would have tried.”

My mother found the idea of death comforting as she would be released from physical and emotional pain. After our initial visit with her oncologist, however, she became terrified of the symptoms she might experience as she was dying. I too was afraid of what would come. Nightmares of her choking while I watched on powerlessly were frequent over the next few nights. Still, she was not convinced that treatment was what she wanted. I pushed her, begged her to be treated. After a long, emotional, and arduous weighing of her options, I shared with my mother's doctors a collective sigh of relief when she reluctantly agreed to treatment.

Two weeks before her surgery, I went to visit after my medical school classes. We had talked on the phone the night before, and our conversation had left me worried. My father's death was a common topic for us, but her perseveration on the irreparable void in her soul was alarming. I found her stumbling around the house, her shoulder dragging against the wall after she had careened into it. She was a drunk, but never this sloppy—something else was going on. She slid to the floor, eyes half-lidded. “I'm going to go find your dad.” I found the empty bottle of morphine shortly after I had called 911; it was my father's from when he came home on hospice nearly a decade ago. She must have held on to it for all those years, her fire escape from a burning reality.

The morphine was too old and there was too little left in the bottle to kill her, but the message her actions sent was loud and clear. Until examined and cleared by a psychiatrist, she was unsafe to be alone. She had a long history of bipolar disorder, acknowledged but untreated. Her mood would cycle between periods of working late every night to days at a time where she would not leave bed or even shower. There had been stints in the past where she had seen a psychiatrist or tried medication, but they never lasted. She enjoyed being colorful, eccentric, and prone to strong feelings. During the week of her hospitalization, there was no argument that she was unfit to make her own decisions and that her mental health needed serious attention.

After she had returned to an acceptable level of risk to herself, she was discharged on several mood stabilizers and with a follow-up visit with a psychiatrist. She went for a few visits; I suspect more to affirm business as usual rather than out of genuine interest. She quickly stopped going, and her passive suicidality and romanticization of death were ever present. She spoke often of the simplicity and relief of simply ceasing to exist. It has been well established that the risk for suicide is twice as high in patients with cancer compared to the general population, and my mother's history of bipolar disorder and alcoholism further compounded that risk.1 I honestly do not know why there was not a psychiatrist on her care team from the very beginning; her unmanaged bipolar disorder was cause enough to justify comanagement. I deeply regret not having advocated strongly for one from the beginning of her treatment.

As her son and having recently become a new physician, I struggled to know how to help my mother. I tried to delicately toe the line between acting as my mother's advocate and protecting her from herself. In a patient as complicated as my mother, one with extensive comorbid psychiatric illness interspersed with episodes of acute delirium, the patient's history of previous preferences may be quite valuable. In my own fear of losing someone I loved, I lost track of what was truly important to her as a human being. The exigency of her attempted suicide blinded me to the otherwise valid intricacies of her longstanding values regarding her end-of-life care.

Even amid the turmoil of her attempted suicide, the specter of her cancer never strayed far. Ultimately, she resigned herself to treatment, undergoing surgery, completing radiation, and receiving two cycles of chemotherapy. She tried to quit three times, each time her radiation oncologist and I encouraged her to continue. Despite her insistence that life was not worth living, she continued onward, driven more so by the fear of a painful death than by the desire for life itself.

I was acutely aware of her existential angst. At the time, it felt like a festering wound that had been covered merely to spare the eyes of those looking on. I was starting my medicine residency at this point, and my burgeoning understanding of patient care only added to my disquiet. I found her plan of care to be hollow. If she truly did not want to be treated and only wanted to avoid suffering, did treatment have to be all or none? Couldn't her physical suffering be minimized while still respecting her autonomy in her right to choose how she should live and die? More disturbingly, if her desire to forego treatment wasn't sound, why wasn't her mental health being treated more aggressively? I could not put these worries to words, and only with the clarity afforded by time can I now explain what exactly troubled me as new physician, let alone as her son.

The hollowness I felt in her care could not be directed toward her care team, as they provided the standard of care. Her surgeon performed excellently in the operating room, her medical oncologist prescribed appropriate chemotherapy, and her radiation oncologist delivered her radiation with precision. Equally, my mother participated in her care as much as her mental health allowed her to. The health system, however, failed her. It felt as though she received her care piecemeal from each specialist, rather than visiting with members of a unified team. Where there should have been collaboration between oncology and psychiatry, there was fragmentation.

Early integration of psychiatric care would likely have had tremendous impact on the last year of her life. Cancer does not afford us the time to treat our patient's diseases sequentially; her mental health had proven to be as great of a threat to her life as her malignancy. Although distress screening and integrated psychosocial treatment are standards of care set by the Commission on Cancer, access to mental health care is still woefully inadequate in many parts of the United States.2 As oncologists, we will inevitably treat patients with mental illness, addiction, or both. Assessment of and intervention on our patient's mental well-being should be given as much priority during our visits as investigating a new anemia or peripheral neuropathy. When there is not a collaborative care model to fall back on, it is imperative that clinicians strive to ensure that patients receive the resources they need.

Despite it all, despite the arguing, the pleading, the crying, the pain, the suffering, despite completing her therapy as prescribed, her cancer continued to grow and surrounded her airway. She entered home hospice and struggled along for a few more weeks. She called me one morning after another sleepless night, gasping for air, and told me, once again, that she was ready to die.

I had learned to ignore those words, alarm fatigue blunting their emotional impact, but this time there was something different in the way she spoke. She was neither groping for consolation nor lost in the trance-like depths of her grief. Her voice was calm and determined, strength drawn from the finality of her decision. She did not need to fight anymore; the imminence of her death was now inevitable. It was the most peaceful she had ever been in my adult life. Six days later, after she stopped putting food or water into her feeding tube, she finally found the relief she had so long desired.

It has taken these 4 years to realize that my desire for what could be obscured my ability to see what was. More than anything, I wanted to spare her from what I saw as avoidable suffering, but I had also seen an opportunity. She would have needed to be sober for chemo, or risk toxicities above and beyond what was already expected. I let my emotional needs drive how I advised her. I wanted her to be treated because I was too afraid to accept her mortality, and too hopeful that this could be the start of sobriety. In the moment, I told myself that she could not truly want to forsake a future that still held so much potential, that she could not truly be willing to abandon her family. At first, I looked back upon my actions with cold acceptance, telling myself that her untreated mental illness was clouding her judgment. I felt justified in pushing her to continue with treatment in what I saw as my duty to care for her. The steadfastness of my conclusions softened into ambivalence the more I reflected. Through my supposedly benevolent interjection in her life, did I inadvertently cause her more suffering in my attempt to avoid it?

Now, I am no longer certain I would have pushed as hard or for as long as I did, or perhaps have even pushed her at all.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford. My guest today is Dr. Colt Williams, a fellow in medical oncology and ethics at Mayo Clinic. He will be discussing his Art of Oncology article, ‘My Mother's Last Lesson.’

Our guest has no disclosures.

Colt, welcome to our podcast.

Dr. Colt Williams: Dr. Shapiro, thank you so much for having me today.

Dr. Lidia Schapira: It is my pleasure. I'd like to start by asking you what you are currently reading, or what you have recently read that you would recommend to our listeners. I suspect that most people who love to write are also avid readers. Am I right?

Dr. Colt Williams: You are very right. I actually love science fiction. And I recently picked up Ender's Game - I had never read it despite the media attention it got a few years ago when the movie came out. And boy, it is just as good as I hoped it would be.

Dr. Lidia Schapira: That's fantastic. I'm glad you enjoy it. Let's talk a little bit about your essay. It is very, very personal and very moving. The strong message I took from your essay was how important it is to support caregivers, and how important it is to recognize and attend to mental health during cancer treatment. Tell us a little bit about what led you to write and share this very personal moving story.

Dr. Colt Williams: My family life growing up was very private. And both when my father initially had cancer in 2009, and then when my mother fell ill in 2017, the culture within my family was very isolating. And I found myself left without much support for myself as a caregiver to my mother. And equally for both my parents, when they were going through cancer treatment had in a way kept them from being able to experience a lot of the help that they needed for both of them.

Reflecting back as I grew through my medical training, and became a resident and then a fellow. As I became my mother's primary caregiver, I saw the damage that that had played both for her and for myself.

And in reflecting on this, I had always felt that there was something that wasn't quite right with how things had played out with my mother's death. And I really wanted to be able to put to words for my own healing more than anything else, a way to find closure from my experiences.

Dr. Lidia Schapira: Let's talk a little bit about the process and the motivation to write as a way to express yourself to achieve some clarity, as you say, to bring closure. How did you get started? And how long did it take you to write this piece?

Dr. Colt Williams: Getting started was the hardest part. I initially wrote a very early version of this in medical school when my mother was first diagnosed with cancer as a case report for how we may approach our patients with comorbid mental illness and physical illness.

And that first case report changed many numbers of times in the ensuing four years that it took, or five years, actually, until its final form. I started working on it in earnest again, after shelving it about a year ago. It took a solid year of coming back to the piece a few times a month, looking at wording, looking at the way I was writing to really make sure that the message I was wanting to convey was clear because I felt there was so much that I want to explore both of myself, and so much I wanted to share about my experience. But I also knew that I needed to distill down my experience into a few key points that would, one, really resonate with myself in terms of what were the issues that kept me from feeling that I had the closure that I so desired, but two, how can I make this a digestible piece for my audience.

And writing has always been something I've enjoyed. I've enjoyed writing poetry. I've enjoyed reading. And for me being able to put pen to paper to help catharsis some of my thoughts has always been very useful for me.

Dr. Lidia Schapira: So, did it work? Did this piece give you what you hoped it would give you?

Dr. Colt Williams: It did in a bittersweet way. It was very hard sometimes to sit down and really think about some of these harder moments that I shared with my mother and to go back and relive them but in taking the time to very thoughtfully relive what were traumatic experiences for me, I was able to examine them now with the benefit of time, in a way that I couldn't because of my emotional clouding at the time for how intense the emotions were. And so, writing did provide me with a lot of closure.

Dr. Lidia Schapira: Sometimes it takes many years to be able to write about something that is emotionally resonant. It's taken me about 20 years to be able to write about a patient that I love dearly who's died, so I totally understand.

But what about the other piece that is sharing these very personal thoughts with a broader audience, especially since you're sort of still in training.

Dr. Colt Williams: I remember coming away after my mother had died, and we had her cremated and we had finished with our small ceremony for her thinking that the experiences I had had with her mental illness, with her alcoholism, with the attempted suicide, all of this during training were all things that seemed that, at first glance, I may not want to share. This complicates things. I don't want my residency program director to know what's going through or my potential fellowship matches to know the troubles that I've been going through. While I was doing well with things, I felt that there was a lot that not only I could learn, but that could be really helpful for others.

Case in point, with how isolating things felt, I felt this need to connect with other people through my experience. And I felt like the conclusions that I had arrived at really coming to terms with the fact that I was and am ambivalent about my actions with how I pushed my mother to receive her care was something that other people could relate to, and that someone else could learn from. And I hoped that I was able to maybe shorten the period from writing, from point A to point B in that process for someone else, through reading about my own experiences.

Dr. Lidia Schapira: How has this experience, Colt, informed your work? I can't help but comment on the fact that you're doing a fellowship, not only in oncology but in ethics.

Dr. Colt Williams: Extraordinarily informative. I think about my mother often when I see my patients, for better or worse. I can't help but project sometimes with some of my patients, but it gives me a reason to pause and to be patient, whereas maybe some other colleagues may be less tolerant of individuals who are non-adherent with their medication regimen or decided to end their radiation treatments early because of side effects despite the clear risk to their health in doing so.

I feel that I can approach patients who can be more complex and may be more nuanced in a way that I can provide them with the grace and with the space that they need to be individuals, even if that does not necessarily line up with what we as their physicians know to be best for their physical health, knowing that not everyone can abide by the restraining needs of cancer treatment.

And by extension, with my interest in ethics, there were a lot of things that I saw both in the way that my mother interacted with her physicians, the ways that she was able to push them, the ways that she was able to make them uncomfortable, made me think a lot about how ought we care for patients like this? And who are we as physicians in the roles of our patients' lives? What role are we playing for them? And how should we exert the very clear power that we have and the important role that we have in a way to make sure that we're always acting in our patient's best interests?

Dr. Lidia Schapira: That sounds amazing, actually. Can you give me and share with our listeners an example of how your own experience as a caregiver and as a witness to your mother's complicated history, as you talk about her romanticizing deaths, and really being prepared to die, almost from the time she was diagnosed, how that has perhaps impacted your clinical care?

Dr. Colt Williams: I can think of a few patients I've seen recently who have come to me after learning that they have metastatic cancer at their time of presentation, very openly discussing forgoing treatment in its entirety, despite there being options proven to not only prolong their overall survival but their quality of life.

And I feel that, even within my group, there are some providers that would really, really push strongly for those patients to consider those treatments without taking the time to consider why: why are you approaching your treatment like this? Why are you approaching your disease like this? What is it that makes you think that this is the right way?

And I say think not to imply that they think it's wrong or to think that they are thinking wrong, but to truly understand where they're coming from as an individual and as human beings.

We all have extraordinarily unique experiences that lead us to become the people that we are. And all those experiences are valid, and simply because my understanding of how I believe I can best take care of you doesn't line up with what your experiences are, does not mean that your goals for your own life are any less valid than what I think you ought to be doing.

So, I think at the end of the day, I'm willing to have a conversation more often with my patients. I'm willing to get myself into places that might be both uncomfortable for me as the provider, and uncomfortable with the patient if they're willing to meet me there on common ground, so we can really find what is going to be for them as human beings the best treatment path moving forward - treatment or not.

Dr. Lidia Schapira: It's wonderful to hear you and one of the themes that I hear in your approach is that you find medicine not only rewarding but really mission-driven. And part of the mission is to get to know the person who has the disease.

I found your essay very powerful because it addressed so many different issues that make caregiving and giving of professional care so complex. One is the idea of a whole person perspective worldview, as you've just explained to us the idea that we want to listen to and help patients tell us what matters to them, and help them live their journey according to their own values and aspirations.

But the other is the issue here of the sadness that emerges from your essay. The fact that your mother was ready to accept the sadness and the finality of death. The fact that it was complicated by her lifelong addiction and history of alcoholism, as you say, the deafening silence of your father's absence in her life. And perhaps what she felt she wanted to do for her children whom I am pretty sure you don't say it, but I'm sure she loved dearly.

How did you manage to put all of this into the essay? It certainly impressed this reader, but how did you make that decision to include all of these different threads into your narrative?

Dr. Colt Williams: It felt dis-genuine to not include them. And how I managed to do it, I think is a mystery to me as well, to be completely honest. The sadness, the pain, so many compromises with her, so many times where I worried about her, so many times where I could think to myself, if only things were a little bit different, if only she could see things and the way that I see things, that was such an integral part of my experience, and through the pain of not being able to have the person that brought you into this world see the value in their own life was really the impetus that led me to the conclusions I'm now able to draw about recognizing her own values and individual.

And while I will always intrinsically see her as my mother, and for all the things that a mother means, before she was my mother, she was still her own person. And those beliefs preceded me. And while any child, I think, would want to think that they are the center of their parent's life, sometimes you're not.

Dr. Lidia Schapira: In your essay, you share with the readers that you feel that she found her peace before she died. Have you made your peace with her death?

Dr. Colt Williams: I think I have now. I struggled with it for a long time. I struggled with whether I did the right thing by encouraging her to seek treatment when she didn't want to. I struggled with whether I should have pushed harder.

I fought with myself on both sides of the coin, which way I should have gone playing out the 'ifs'. What if I would have done this? What if I wouldn't have done this? How things could have been different. But in the end, it's the truth that when I spent my last few days with her, it truly was the most peaceful I had ever seen her in my life. That te restlessness that could be felt within her, even before she was ill, was gone.

She was finally complete in a way. She, in her mind, had completed her mission. I was in medical school. I was successful. My sister's a lawyer. She's doing well. Her children were grown and taken care of. And she could finally be free of what she felt like were fetters holding her down to a horrible existence.

And I think the experience of being able to be present with her and to place myself in her shoes, as best I could, was really enlightening. And I think my last week with her while she was at home dying was the most formative event of my life.

Dr. Lidia Schapira: I've never seen you with patients, but I suspect that you're very sensitive to the plight and situation of caregivers. Can you tell me a little bit about that?

Dr. Colt Williams: Cancer is a disease that affects not only the patient but the entire family. It takes many people to take care of our patients, from the physicians to the nurses to our pharmacists to our CNAs that are in the hospital, but equally, we see them for an hour, if we're lucky every three weeks, and our patients' family members or their caregivers are with them the other 24 hours a day and the other times, they're always there. And if it wasn't for their caregivers, our patients certainly would not be doing as well as they are.

Cancer is not just a disease that affects the organs, but it's also a disease of existential angst. It's a disease that affects our understanding of what it means to be human, of what it means to have a limited time on this earth, to be mortal beings. And those are things that we often as a species avoid encountering until we absolutely have to.

As I saw myself, trying to handle this in isolation does not bode well. We are a social people and we rely on our caregivers and our family extraordinarily heavily. And it's just as important to make sure that our patients' families are set up for success if we want our patients to succeed, as it is to make sure that we've dosed our chemotherapy appropriately or provided the appropriate antiemetics before infusion.

Dr. Lidia Schapira: Listening to you talk convinces me that you have found your path in onc, and in ethics, and perhaps moral philosophy as well. It's wonderful to hear you reflect. I thank you very much for sending us your work and wish you much success in your career both as an oncologist and ethicist.

Dr. Colt Williams: Thank you, Dr. Schapira, for having me. It's been an absolute pleasure to speak with you.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO’s podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO the mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

"A Soft Spot," by Rebecca Snyder: A surgical oncologist discusses the hidden emotional toll experienced by patients with cancer.

TRANSCRIPT

Narrator: ‘A Soft Spot’, by Rebecca A. Snyder, MD, MPH.

I remember a day as a child when my father, a vascular surgeon, came home and immediately retreated to his bedroom. He did not emerge for some time, and when he did, he spoke very little to anyone. When I asked my mother why, she told me softly, ‘One of your father's favorite patients died today, and he is sad.’

This surprised me at the time that my father felt so deeply for his patients that it affected him for hours after coming home from work. I understand it better now.

I first met Gary after his medical oncologist asked me to consider operating on him for colorectal liver metastases. During our initial visit, I observed that he was a quiet man: nervous, kind, and polite, saying little unless prompted. Over time, I came to learn that he was a solitary person who found fulfillment and purpose in his work, enjoying hunting and fishing in his spare time.

He lived almost an hour and a half away in a rural part of North Carolina. Outside of his visits, we communicated mostly via his brother, because his cell phone rarely had reception.

In the months before our first visit, he had been treated heavily with chemotherapy and appeared to have had a good response to treatment. Although he had disease in both sides of his liver, it looked as though his disease was resectable with a two-stage operation. The first stage to remove the left part of his liver and the second stage to remove two metastases in his right liver. He was young, in his early 50s, and otherwise healthy - a good candidate for surgery.

The first-stage operation went smoothly, but when I saw him back in the office to plan for the second, his imaging revealed significant growth in the two remaining metastases in his right liver. To make matters worse, his normal liver had failed to hypertrophy enough to allow for another resection. He silently stared at the floor, visibly disappointed when I shared this with him. I told him I was disappointed too.

Together with his clinical team, we then embarked on a series of treatments, beginning with microwave ablation therapy to the growing tumors. Unfortunately, in the interim, he developed a new liver metastasis with resulting biliary obstruction.

We attempted unsuccessfully to drain his liver with an endoscopic stent with the goal to restart systemic chemotherapy. At our most recent visit, I expressed my concerns that the endoscopic stent had not been effective and recommended a percutaneous drain to decompress his bile duct.

His gaze drifted to the floor. Sensing he was upset, I placed a hand on his shoulder, hoping to convey a steadiness and confidence that might offer some reassurance. As tears formed in his eyes, I felt his discomfort at displaying emotion in front of me, so I offered him a few minutes of privacy with his brother.

Although he had been willing to undergo repeated endoscopic procedures, it seemed as though the idea of having a drain outside his body, a visible and tangible reminder of his progressive cancer, was clearly distressing to him.

When I re-entered the room, we reviewed our plan for him to have an external drain placed and then begin a modified regimen of chemotherapy next week, which he and I both knew would not be curative. We did not speak this aloud, but the eye contact he made with me communicated that we shared a common understanding. I silently hoped that it would buy him some time at least.

Two weeks later, I unknowingly clicked open an automated message in the electronic health record stating very matter-of-factly that Gary had been brought in by emergency medical services, dead on arrival, from a gunshot wound.

I called his medical oncologist, who reluctantly confirmed the news. He told me he had hoped that I would not find out because he knew I would not take it well. Suffice it to say, he was right. Although most of the cancers I treat, pancreatic, metastatic, colorectal, and cholangiocarcinoma, are aggressive malignancies with poor long-term survival, Gary was the first patient of mine to commit suicide.

When I first learned of Gary's suicide, my mind immediately returned to my last visit with him. ‘Had I been too honest and direct, not buffering the concerns we discussed with enough hopefulness? Had he expressed signs of clinical depression that I had missed, misinterpreting his responses as a normal disappointment when in fact they reflected much deeper despair? Should I have confronted him more directly?’

I called his older brother while the news still freshly stung, feeling a sense of urgency to make sure his family knew how much Gary mattered to me and to his treatment team. After we exchanged platitudes, I found myself telling him that I had always had a soft spot in my heart for Gary, which was true. I tried very hard then not to cry but failed.

As a private person myself, I have always felt a particular sense of community with introverts like Gary, a shared experience of a need for privacy, an appreciation for quiet and aloneness, and a discomfort with being overly expressive among anyone other than close friends or family. Nature or nurture, I inherited this trait from my mother, who preferred pursuing her solitary artistic hobbies over small talk.

Like Gary, my mother also became deeply depressed when she was diagnosed with metastatic lung cancer, a depression that worsened when she experienced debilitating side effects of treatment, only to learn that these treatments had not even been effective. As her daughter and one of her caregivers, it was not her physical suffering but her emotional suffering that was most agonizing to witness.

During my mother's experience with end-stage cancer, I gained an intimate awareness of cancer's emotional toll in a way never afforded by my formal training or in my clinical practice. Stepping beyond awareness toward confident intervention with my own patients, though, has remained uncomfortable for me. I listen, offering empathy and understanding, explaining treatment options when there are any, and comfort when not.

For some patients and families, I morph into a punching bag, offering them an outlet for their anger when I cannot offer them anything else. With Gary, I tried to communicate to him that beneath his displays of hesitancy and reservation, I recognized the struggle he was experiencing, his hopes, and perhaps more importantly, his disappointments.

Now, I do not feel like this was enough. Losing patients to cancer is something I have experienced from both a professional and personal standpoint and unfortunately, with which I have grown all too familiar. Knowing that a timid and kindhearted patient of mine felt a sense of hopelessness and despair this deep, however, is acutely and newly painful.

I imagine I will always carry a soft spot for Gary with me, a tender soreness that lasts. It may go unnoticed at times, forgotten temporarily with the distraction of another patient's triumph: a curative resection, a follow-up scan with no evidence of disease, or a grandchild's high school graduation witnessed. Yet, I expect it will sting again, just as a bruise does when pressed intentionally and gently, to confirm that it is still there. I will be reminded of him, feeling a familiar ache when I witness someone's growing despair.

Next time, I will pause to ask, ‘Are you losing hope?’ Perhaps you will ask too.

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Rebecca Snyder, Assistant Professor of Surgery and Public Health at Brody School of Medicine at East Carolina University. We'll be discussing her Art of Oncology article, ‘A Soft Spot’. Our guest has no disclosures.

Rebecca, welcome to our podcast.

Dr. Rebecca Snyder: Thank you, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you with us today. I'd love to start by asking you as a gifted storyteller - I've read some of your stories published also in other publications - tell me a little bit about your writing process. Why do you write? When do you write? What brings a story to the page for you?

Dr. Rebecca Snyder: I would say that I don't have a very structured process. Typically, it begins with some ideas that percolate in my mind, oftentimes prompted by one specific event. And then I think once I have time to sort of bring in some other thoughts and start to formulate them, then it really happens when I have a moment to sit down where there's quiet, and my children are not interrupting me and my pager is not interrupting me, and have a few hours to really sit down and get something on the page. And then I do quite a bit of editing over time. I reread a lot and rethink about the way I say things until I get it just right. So, it takes me days.

Dr. Lidia Schapira: That's very interesting. Let's go back to something you said. Let's chase after that a little bit. You said something that sort of stays with you or percolates; is it a moment of particular emotional resonance? Is it a difficult situation? Is it something that triggers a deep memory for you?

Can you tell us a little bit more about what got you to write, say this piece about Gary, you've also written about your mother, you've written about being a petite surgeon in a sexist world, what are those ideas that stay with you, that then lead you to write about them?

Dr. Rebecca Snyder: They're each a little bit different. So, I don't know that I have one answer to that. I think my experience with my mother took me a long time to be ready to write about it. It was something way too emotional for me to even confront for myself for a long time. And then eventually, I felt like I was in a place where I could put something on a page and that was very therapeutic for me.

With Gary, that was really an acute event. And when it happened, and I processed it emotionally, I knew that it would help me to write about that. And so, I actually did that, I believe, either the same day or the next day that I learned of that event. At that point, I wasn't necessarily writing with the intention of publishing, but just to help me get through those feelings in that experience.

Dr. Lidia Schapira: So, I'd like to talk a little bit about this idea of writing and sharing with others. One thing is to write to process a difficult experience, which you've so nicely stated. The other is to take the further step of writing for publication, which means putting something that's really private out in front of your colleagues, your peers, and so on. Tell us a little bit about that. What triggers you to say, 'Alright, I've written this to process but now I want to share it'?

Dr. Rebecca Snyder: I write about how I consider myself an introvert. Some people who know me well aren't surprised to hear that. Some people say, ‘Oh, I wouldn't have expected that you consider yourself an introvert.’

I think that for me, there are thoughts that I don't feel comfortable communicating, necessarily in a public forum, or with people that maybe I don't know as well. But when I can do it in written form, for some reason, that's more comfortable.

So, it's a way for me to share things that I feel compelled to share that I think are important and relevant to other people and may resonate with them in some way, but that I might not be comfortable broadcasting to a large audience. And so, writing allows me to share those feelings within the comfort of my introversion.

Dr. Lidia Schapira: What role does narrative and narrative medicine play in your professional portfolio? Do you read other narratives?

Dr. Rebecca Snyder: Honestly, it's one of the things I enjoy the most, aside from operating. I don't have formal training in it. Although I imagined I would really enjoy taking some courses. I think my writing has been informed by my own amateur reading and writing over time, I've always been a big reader.

I've written about my mother's love for books. And that was something she shared with me beginning when I was a young child. I think it's become part of how I see myself professionally. Although it still feels a bit like a hobby. I think that it should play a significant role in medicine. But I don't think that we have done a great job as a medical community of incorporating that into the dialogue.

Dr. Lidia Schapira: I share that sentiment. It would be lovely to see narrative medicine in the mainstream of medical education, rather than perhaps at the margins or as an optional thing for some, I think stories that are enormously powerful.

And so, with that, let me ask you another question, and that is, what have you read recently that you recommend to others?

Dr. Rebecca Snyder: You asked if I read another narrative medicine? I read, A Piece of My Mind at JAMA every week, and I read the Art of Oncology. One of my other favorite weekly columns is Modern Love in the New York Times, I look for that every Sunday.

And then I read a variety of books. I would like to say I read more than I do because I think my clinical reading takes up quite a bit of my time as well. The last novel I read was, The House in the Cerulean Sea by TJ Klein, which was a great, very magical, lovely story. I found with the pandemic that I can't read things that are really intense or distressing. So, I chose things that are uplifting in some way or positive, and that was a lovely fantasy-type book to read. And then I read some nonfiction. I'm reading a book about the Old Testament now because I wanted to learn more about that. So, I try to have a diversity of literature that I'm reading at a given time.

Dr. Lidia Schapira: Do you read books or screens?

Dr. Rebecca Snyder: Books, 100%. I don't like screens to read. I print off every peer review, I do. I have to print it. I can't read. Other than editing, I don't like to read on a screen.

Dr. Lidia Schapira: Let's go back to your story about this patient, Gary, whom you met and operated on. And the need you had to talk about the emotional response you had to learning that he suicided, that is something that is so very difficult for all of us.

So, first of all, my deep condolences to you for your loss. Tell us a little bit about the relationship you had with Gary.

Dr. Rebecca Snyder: I don't know if we're supposed to admit, as physicians, that we have favorite patients sometimes, but he was one of my favorite patients. What I appreciated about Gary early on is he was very soft-spoken, he was very bashful, and he would blush easily. I could tell he never wanted to be a burden, even in my clinic.

So, he didn't want to take up too much of anybody's time. He usually brought his brother with him and allowed his brother to speak for him. And he would speak up when I would ask him directly, but often would nod or use body language and was very quiet.

The first time I saw him he had been treated for a long time with chemotherapy. I believe he was sort of under the impression that he did not have any surgical options. He'd never seen a surgeon before, but his medical oncologist approached me and said, ‘I know that you're willing to be aggressive, and he's healthy and young, would you consider it?’ And I had reviewed his scans ahead of time and thought it was worth an attempt. And so, I met with him and in some ways, I feel like I probably gave him some hope at that point. Maybe he had already processed that, but I reignited that.

I got to know him pretty well because I cared for him for a while. Obviously, I saw him several times prior to surgery, then I operated on him, and cared for him postoperatively. And then once he recovered, and we planned for the second stage. And so, I grew attached to him because he was in no way demanding or difficult, but very unassuming, very kind, and just a gentle soul.

Dr. Lidia Schapira: And you talk about having moments of sort of shared silence or shared understanding, right? So, it sounds like you, you bonded with him. Most of the communication was done through his brother because he didn't have a cell phone or his cell phone was out of reach, right?

And so, you hoped with him that you would be able to really help prolong his life. And then came the bad news that his cancer was growing. Bring us a little bit into the consultation room where you share that news with him.

Dr. Rebecca Snyder: When we first talked about it. He was quiet. He looks at the floor a lot. And he didn't verbalize his disappointment, but I could see it. I validated that for him and told him I was disappointed too. But I think when I really saw a shift was when I told him that I thought he needed to have an external biliary drain placed. I think he was continuing to work through all this. And that was really important to his identity, and the idea that he might have to have a drain, I think for him was incredibly distressing.

I think to him it kind of marked him as different, as this is permanent, and would mean that he might not be able to work, and that was a big blow for him and I could tell that. I could tell he was starting to tear up but he was very uncomfortable doing that in my presence. So, I told him I would give him a few minutes of privacy and left the room so that he could express his emotions more comfortably.

Dr. Lidia Schapira: And that was the last time you saw him, right?

Dr. Rebecca Snyder: That's right.

Dr. Lidia Schapira: So, then he leaves and you received the news that he suicided, but you're not told directly. You read it in the chart. And you immediately called the medical oncologist and they said that they wanted to protect you from this news. How did that feel?

Dr. Rebecca Snyder: It was shocking. You know the Electronic Medical Record has some wonderful things about it. It's easy to keep up to date with your patients, you get alerts anytime a patient of yours is admitted to the hospital or discharged from the hospital. But yet, it's obviously incredibly impersonal and abrupt.

And so, I had a notification that he was deceased. My initial thought was, ‘Wow! He must have had cholangitis. And he didn't complain about his symptoms and he didn't tell me by the end, so he must have gotten really sick and septic. And then that must have been what had happened. But then when I looked at the chart, and I called his medical oncologist, and I read the details, I realized that's not what had happened, and that was very hard.

Dr. Lidia Schapira: I imagine it must have been absolutely awful. Again, my deep condolences to you. How did you deal with that news? How did you get on with your day after that?

Dr. Rebecca Snyder: I called his brother first. I wondered, maybe I shouldn't now because it shouldn't be about my grief - I'm the physician - it should be about his family's grief. But I still wanted to connect in some way pretty immediately with someone else, in addition to his medical oncologist.

He was very gracious and appreciative. We didn't speak for long, but I just wanted to make sure that he understood that we all cared that that had happened because otherwise, I would never have spoken with him. If I don't reach out. There's no follow-up visit, there's no opportunity in the system to complete that conversation. That helped me a little bit, and then I had to try to turn it off. I had to go lead our GI tumor board and have afternoon clinic and go on with the rest of the day.

Dr. Lidia Schapira: Well, I'm deeply grateful to you for having written about it and decided to share it with us. I think that losing a patient is terribly hard. We do connect with our patients and feel for them. But this, learning in this way that one of your patients suicided or found living unbearable, is probably the hardest thing. Fortunately, we don't deal with it often. And many of us have or have not had those experiences. So, thank you so much, Rebecca, for reflecting and sharing that reflection with us.

Are there any other thoughts that you want to share with readers of the piece that may help them understand the story or the message here?

Dr. Rebecca Snyder: I can say since it's been published, I've already heard from several colleagues that they have experienced something similar. One was particularly devastating because the patient had actually completed therapy but had lost his business and committed suicide because of the financial burden of his care.

If you think about it, those are the patients with the greatest extent of distress. But that's not even touching the emotional burden that so many patients are experiencing that we never see. I don't think it's possible or it's on us to alleviate that because some of that is a normal reaction to a cancer diagnosis. But I do think that being aware of the depth of despair that patients can experience is important. And having witnessed my mother being on this side of the patient, even just that recognition and empathy from one's physician can mean a lot to a patient and their family. So, I hope that we can all at least bring that awareness into our clinical encounters and try to offer that empathy when we sense those feelings.

Dr. Lidia Schapira: Well, I'd like to thank you for sending us your story, and thank you very much for participating in this conversation. I deeply enjoyed it.

Dr. Rebecca Snyder: Thank you, Lidia! I really appreciate being here.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO’s Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

While you're there, be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology Podcast. This is just one of many of ASCO’s podcasts, you can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for you in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

In Chopin’s Rubato in Cancer Care, by Rajiv Agarwal, an oncologist finds appreciation on how music can inspire his care for patients with cancer. Read by JoBeth Williams.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO podcast network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. Chopin's Rubato in Cancer Care.

Years ago, my art was different. I mastered how to read and interpret the language of music. I spent over two decades learning from mentors, Bach, Mozart, Haydn, Chopin, Beethoven, Brahms, and Rachmaninoff. I adapted to each of their styles, forcing my fingers to move in unfamiliar ways until muscle memory took over, changing the pressure by which I applied my fingers to piano keys to produce different textures of sound. Now, as a oncologist and palliative care specialist, I have come to appreciate how my musical background has inspired how I care for patients with cancer.

The notes, the rhythm, the beat, the freezing, the harmonies, the softness and loudness, the intentional silence, and the underlying musical theory and history that grounds it all. These are analogous to the scientific principles I practice and uphold in medicine today. But as in music, the art and the artistry of medicine are found in the performance.

Below is my sonata. Exposition. I was approximately seven years old when I first met Frederic Chopin. From the start, I understood Chopin's science. I listened to him, I heard what he said with his notes, and heard why he chose to say it in that manner. Chopin tested me and I responded. Not always with perfection, but always with sincerity, emotion, and resolve.

Even so, I never really understood his art. I saw his notes on the page and relayed synaptic signals to my fingers to produce the corresponding sounds with accuracy and precision, but this was not enough. As I was playing one of Chopin's nocturnes, which I practiced for months, my piano teacher stood up in the middle of her living room and raised her hand signaling me to stop. What could I have done differently? I had perfected those notes, perfected his rhythm. I thought I had reproduced his results.
She sat down on the piano bench in my place. She did not play, she performed. She started similarly to establish the foundation of the song, and then she did something different. Her right hand was not completely in sync with her left. She deliberately played faster then intentionally slowed down. She stole time from certain notes and added the time back in others, temporarily changing the structure and timing of musical phrases without losing its integrity.

She shaped a new interpretation that was uniquely hers, nuanced and free but without completely abandoning Chopin's scientific arrangement. In essence, she deviated with reason. This experiment spanned a total of a few seconds, and the result was beautiful. My rendition was mechanical. Hers was expressing and living.

She explained to me that this was Rubato. In that moment, I discovered that art, or at least my interpretation of it, was an expression of individuality and a result of innovating within a theoretical framework. With Rubato, the musician discovers rhythmic subtleties to produce a novel and meaningful interpretation of a melodic phrase. And perhaps most importantly, the musician cannot be radical, lavish, or wander too far.

He or she has always pulled back with an understood force to the fundamentals of musical theory and the notated language. To distort or deviate too much would be destructive. A musician must always remember and respect the scientific background upon which art is produced. Development. More recently, I have realized that Rubato exists within the practice and performance of medicine.

As I learn medical science and the historical evidence that guides decision making, I marveled at how seasoned physicians knew when and the degree to which to adjust and innovate in clinical practice. For me, this became most evident in my observations and experience while caring for patients with cancer. I completed my training in both oncology and palliative medicine with Chopin's music playing in the background.

The interplay between the scientific knowledge and artistic freedom in oncology is fascinating and is perhaps that which brings verve to the care that we provide. We practice clinical oncology with rigor and technique, using an algorithmic logic that is rooted in a growing field of scientific evidence. These are the notes on the page.

As oncologists, we understand why we recommend standard treatment regimens because this is the science that we honor and apply. In addition, we contribute to our science and advance our discipline through research. We test and combine pharmacological instruments to compose new and sophisticated regimens with the goal of improving the lives and outcomes for our patients, potentially reaching a larger audience. Yet, not every clinical presentation or situation is the same.

At times, we are asked to improvise and think beyond the written notes and beyond our comfort zone, acknowledging that our understanding of what to do is limited to an extent. We often extrapolate with nuance and stretch what is known to fulfill the unique needs of each patient. And above all, in our assessment and treatment planning, we incorporate who the patient is as a person. In doing so, we fine tune our approach and add artistic style.

The final product is a performance of evidence-based notes that is deeply personal and powerful and one that cannot be simply replicated. It is in the performance that we apply our clinical judgment. We personalize cancer care, and ultimately, we build a meaningful relationship with each of our patients. I witnessed my mentors in oncology practice their art with ease. They use their experience to manage patients both within and outside of guidelines, using individualized rationale and intention.

They made modifications to treatment on the basis of a patient's comorbidities, preferences, and life outside of cancer. They were experts in knowing when not to take treatment breaks, when and when not to consider local regional approaches. When and when not to advocate for investigational agents, and when and when not to expand beyond the available data, all done to carefully tailor treatment and provide individualized care.

They acknowledged their variations in management and never lost sight of the theory that grounded all aspects of their clinical decisions. Drugs were not offered if there was neither a molecular nor clinical rationale to do so. They made decisions with controlled instinct, yet never broke the fundamental pillars of our science. They performed.

In palliative medicine, the conversation is the song. As palliative care specialists, we rehearse communication techniques to create a therapeutic alliance and partner with patients facing serious illnesses. We are taught how to structure a conversation and are often reminded why language and discourse matter. We use mnemonics, validated questions, and logical transitions to effectively communicate in the clinical encounter.

We cover a range of topics from addressing symptoms to eliciting the values, goals, and preferences of patients and their loved ones. We value the science and mechanics of our song. But what continues to amaze me is when adjustments have to be made in this process in spite of the guiding principles that have been so well studied. A subtle change in communication occurs, and in just seconds, the clinical encounter can be transformed.

I listen to how my mentors in palliative care performed their art. They shifted and directed the conversation to match the needs of the patient, and the flow of conversations unfolding to create new meaning and understanding for both parties involved. I observed how some patients preferred not to discuss their code status or divulge what mattered most to them on their first visit with a palliative care specialist.

When this happened, my mentors paused. They remained fully present. They avoided rushing into the next notes when the timing was not right. This was the artistic rest needed in the music to give our patients time to reflect on what was previously said and played.

It became clear to me as we learned difficult conversations that I had to expect and encourage variation within the structure of the clinical encounter. Conversations could not be robotic or purely technical. I found art in the performance of palliative care when we led conversations freely and did so out of instinct, while always remembering the core principles of empathic communication.
I discovered that the science of palliative care and communication was not neglected if questions remained unanswered and that intentional silence during family meetings often created a powerful space that could unite everyone, patients, family members, nurses, oncologist, and palliative care specialists. My palliative care mentors taught me to be meticulous, yet flexible.
We stole time from certain topics only to invest time in others, tailoring discussions to meet the individual needs of each patient. Through our artistry, we listened and our patients felt heard. Recapitulation. The musical already mastered years ago has informed the art of oncology and palliative medicine that I perform today.

Chopin's Rubato has changed how I listen, how I make medical decisions, and how I converse. It has helped me understand that the art of caring for a patient with cancer hinges on the regard for the science of oncology and palliative medicine, while also recognizing the value of innovation and making subtle adjustments when needed. Finding freedom within the structure of oncology and palliative medicine can be beautiful and rewarding.

Displaying too much freedom, however, can be dangerous and unsettling. Like a musician, a physician must always remember and respect the scientific background upon which art is produced. Both in music and in medicine, Rubato comes with practice and experience. I am and always will be refining my art. Today, when I sit on my piano bench after a day in the clinic treating patients with cancers, I thank all of my musical and medical mentors for sharing with me their expertise and inviting me to their performances, and most of all, I thank Chopin.

[MUSIC PLAYING]

Welcome to Cancer Stories, The Art of Oncology Podcast. I'm Lidia Schapira, your host of its program, and with me today is Dr. Rajiv Agarwal. He's an assistant professor of medicine in the division of Hematology and Oncology at Vanderilt-Ingram Cancer Center. Welcome, Rajiv.

Thank you so much for having me.

It is a pleasure. Rajiv is the author of "Chopin's Rubato in Cancer Care", an essay that was just published in Art of Oncology and JCO. Tell us a little bit about your career as a physician, musician, and how this art of performance informs your practice?

Sure. I was introduced to music really early on and really it became my first love playing when I was three, and my piano teachers really pushed me in a way that, I think, really informed how I practice medicine now. Over the course of medical training, I've had less opportunities to perform in public spaces, but I've been able to transition some of the skills that were in the music to my performance as a physician, and I think that's really what this piece is about is how to find meaning and reflection and nuance in the art of oncology and medicine as a whole.

And one of the aspects of the piece that sounds so interesting I'm sure will resonate with readers is that you talk about communication as the tool for palliative care physicians and perhaps even oncologists, and you talk about the delivery as a performance. Tell us a little bit about how you think about the delivery, the communication, as performance.

Yeah, that's a fantastic question. So I trained in both oncology and in palliative medicine, and in my palliative medicine training, I really witnessed and heard, which I think is the key point of my training is I heard experts in the field communicate. And I think when you approach a conversation with a patient or with any person, you are aware of what you want to say, but you also reflect and adapt the conversation based off of what is heard, and I found in my experience listening to people have these conversations, which are very sensitive and pertinent conversations that it didn't always follow a formula.

There was a structure to the conversation. We could address symptoms physical symptoms, emotional symptoms, it then could segway into discussing illness understanding, and then it could segway into discussing goals and preferences and values, but it didn't always have to follow in that exact structure. Sometimes the conversations would adapt, and that's the part that I found to be the most artistic, and frankly, the most musical.

Tell me a little bit more about some listening aspect of these conversations. In just a few minutes we've spoken together, you've used the word heard and listened. How does your training as a musician perhaps inform your ability to listen to patients?
So I think what Rubato really embodies as a musician, and it's how do you listen in between the notes? You can move from one note to the next, which is written on a page of a musical score. But it's almost the instant pause or the instant rest in between notes. How do you move from one note to the next, and when you fully listen to that change in a musical piece, I think that's where you can find a lot of meaning.

And similarly, in a conversation what I found to be the most important is how do people use words and then connect those words and have a pause, or where do they pause in their conversation? I think you can gain a lot from, not only what is said, but how it is said. And that, I think, as a palliative care physician, has really helped me with my musical background, because if a patient may say something, they may say it in a different tone or they may have different pauses between the words they're using and their language, and that can directly impact how I would respond or whether it's needed to continue that direction of the conversation and do we need to make a shift. That I think it's a skill set that has really been, in a way, impacted by my musical background.

I found this so fascinating, and boy, your patients are lucky to have you. Rubato really means the stolen, so what your piece is about and your reflections are about is the reminder that sometimes we need to borrow a little time or speed it up or slow it down, and you need to have a mastery over the music and we feel it in order to know when to do these things, and this is what you tell us you've learned from your role models. Can you tell our listeners a little bit more about this idea of the rhythm of conversations and the flow of a dialogue between physician and patient?

The way I think about Rubato is, on a musical piece, you can look at the musical notes, and if one were to just play those notes as written with the exact time and exact rhythm of those notes and rests, it would be almost too perfunctory, too mechanical. And so what Rubato does is allow the performer to look at those notes, and the key point is that you can't sway away too far because it destroys the integrity of the key, but you're able to really interpret those notes in a meaningful way.

And I think in a conversation between patients and physician, it's almost the exact same thing. You can walk into a clinic or walk into a hospital room and have a conversation with the patient, and we know what we need to discuss that physicians. Sometimes the topics can be can vary from addressing symptoms to very serious conversations about where people are, what their values are, and how they're processing their illness in the context of their lives.

And when you're able to kind of listen to the rhythm of the conversation, and if that means taking a pause, allowing there to be a breath space in the conversation where you normally would not have done so and just allowing patients to speak, that really I think can guide a conversation in a more meaningful manner. Another way to think about it is even if we do all of that, sometimes conversations don't happen the way that we intend for them to happen. And I've found that it's best to kind of reflect on those conversations and think why was that the case.

Sometimes it's not the context of what is being-- content of what is being said, but it's more of whether patients feel as though they are being heard, and I think hearing patients in that rhythmic manner can really have a profound impact.

That's beautifully stated. And music is so much about feelings, although you're remind us that there's also a science to it and a structure to it and an order that needs to be respected in order for it to be beautiful and to be played as it was written and intended by the composer. Tell me a little bit more about how you practice and how you teach your fellows now some of some of these incredibly wise things that you've just shared with me.
I think one thing that I tried to really uphold in my practice is to always remember the science, because I think the evidence is really what guides us in our field. And so we have to honor and respect that, and that means not doing something too outside of the box. You have to be able to understand where the evidence lies and the treatments of certain cancers, where the evidence lies in the ability to have a conversation or how to impact advanced care planning. I think that is really key because it lays the foundation, but what goes beyond that step, then is where to add the nuance.

How do you add your individual flair to practicing medicine without really swinging too far away from the theory and the science that we have to uphold. Sometimes, it is important to really just stick by the science, and that should always be the very first step, but we have more cases than not, where we have to think outside of the box. And in doing that process, I felt that transitioning or seeing medicine through the lens of Rubato has allowed me to understand the limits of swaying away from science and swaying away from the fear and evidence that we have, because one cannot truly try to create something novel without evidence.

That's not what a musical piece is intended to do, which is to have notes on a page and then for you to improvise completely. There's still a force that's pulling us back towards the evidence and science, and so that's really what I always try to teach fellows, residents, med students, and even myself constantly is that we have to always remember what are the notes on the page.

That's, again, beautifully stated, and music provides so many metaphors for medicine, doesn't it? Do you ever talk with your patients about music? Have you bonded with a particular patient to also share a love of music and performance?

I've had a few patients. When I talk with patients, I always ask, what matters to you in life and what are some of your hobbies and what are some of your goals, and usually, when I ask, then I'm able to get to know patients of people, and some of the patients have told me in the past that they were pianist themselves or they have a deep love for classical music, and in that, we're able to share stories, and I think that's very human is to be able to bond with someone, irrespective of their illness or where they are in life through a sharing of a story or a connection.
And so in those conversations with the few patients that do have that same reflection of music, it's nice. It's comforting, I think, both for the patient and for myself to be able to share that human bond in a way.

Sure. There have been so many programs around the country that try to bring physicians to the arts. Literary arts, visual arts, and certainly music. Have you participated in any or do you have any preferred programs that you've been exposed to?
Yeah, so when I was in college, actually, I used to volunteer for an organization called Musicians on Call, and it allowed musicians to locally, nationally, to perform for hospitals and other clinic settings, and so that was something that was very unique for me at the time. And throughout medical training, I've adapted and I've performed a few places for patients where I can. At Vanderbilt, I do know that there is a group of physicians and nurses and health professionals that get together, and I am-- after writing this piece, actually, I was invited because I'm still relatively new to Vanderbilt at this moment, and I was invited to be part of this group, so I'm looking forward to more opportunities at my institution.

Well, Rajiv, thank you for a lovely conversation and for sending your work to JCO. A beautiful reflection of the art of performance, the art of oncology and all of the enormous gifts that music can bring to our lives and to our work in the service of patients. So thank you very much, and I hope you send us another essay sometime.

Thank you so much, Dr. Schapira. It was an honor to be able to have this conversation with you today.
Great. So I look forward to sharing more conversations with you about the art of oncology.

Until next time. Thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you are there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCOs many podcasts. You can find all of the shows at podcast.asco.org.

“A Note of Gratitude” by Austin J. Price: A senior resident honors his grandmother and expresses gratitude to a doctor who had a long lasting influence on him and his family.

TRANSCRIPT

Narrator: “A Note of Gratitude” by Austin J. Price, MD-MPH (10.1200/JCO.21.01781)

Mary Ann Richards-Elbrader was many things. Born in rural Kansas in 1936, she was a product of the pre-War Depression Era. That fact, I am sure, had an impact on the type of person she would become—a hard worker to a fault and a fiercely loyal family woman. She was the mother of five, the grandmother to 13 including me, and a friend to all, rarely knowing a stranger. Only a high school graduate herself, she believed wholly in the value of education, something that no other person could ever take away. Owing to that belief, all of her children earned college degrees, something that made her immensely proud. She was quick to anger and even quicker to apologize. Devoutly faithful, she taught her children to believe in something greater than themselves. On a more lighthearted note, she was known to lay back in the recliner after a hard day with a stiffly poured vodka. I recall the kindness ever present in her eyes, seen through large, clunky, 80’s style frames and the lines on her face that easily divulged to the world she was someone who loved to laugh. The fact that she became a patient with cancer in 1995 is quite likely the least interesting thing about her.

My grandmother’s journey with cancer began, as many things did for her, in the service of others. She was a frequent blood donor. After giving blood once, she was found to be anemic and instructed to see her primary care doctor. The diagnosis came swiftly— colorectal cancer. From what I have been told, the goal initially was cure. I was very young and hardly able to grasp the nuances of her clinical course. Nonetheless, I know she had surgery and chemotherapy, and for a while after that, everything seemed fine. My mother and aunts recall a discussion when there was mention of age spots in her liver that would be monitored. That probably seemed harmless at the time, but it sounds so ominous to me now. Indeed after a 1.5-year remission, my grandmother experienced a roaring recurrence, this time in the liver. As tragic as it was, I share these details merely as a prelude to something wonderful.

It was 1998, and my grandmother found herself seeking a second opinion at the University of Nebraska from a medical oncologist named Dr Tempero. As my family recalls, there was a clinical trial for patients with colorectal cancer metastatic to the liver ongoing at that time. My grandmother initially qualified but was soon disqualified for medical reasons. Despite that, our entire family quickly came to thoroughly appreciate this oncologist. What it was about her that resonated so deeply is difficult to express in words. In my mother’s terms, it was her confident, no nonsense, but never cold, demeanor that provided assurance that she knew her stuff while still having her patients’ best interests at heart. She was also very honest from the outset in a compassionate, preparatory way, without becoming bleak. Perhaps most striking, my mother recalls, was their last meeting in Omaha, when she explained that there was no more she could do from a medical prospective. There were tears in her eyes, but she did not cry. She exuded both empathy and resolve, which made her more human but no less professional. My grandmother succumbed to cancer on September 20, 1999. I was 8 years old. I never spoke to her specifically about Dr Tempero, but I remember hearing stories about that doctor in Omaha who was so acutely aware of the human experience.

A decade later, I was about to start my freshman year of college. I had always been reasonably smart, fairly ambitious, and done well in school. However, as an 18-year-old, I shall admit that I was more preoccupied with the social aspects of college than I was with what might happen in 10 years. Slowly, I became more interested in the prospect of going on to medical school. Much of my early childhood had been fraught with my grandmother’s illness and I recalled the various roles physicians had played in her life. My mother always told me, "If you are going to be a doctor, be like Dr Tempero.” I realized early on becoming such a physician would require much more than good grades and perseverance; it would require a constant commitment to being present, humble, and empathetic, without losing the confidence that allowed others to find comfort and value in my assessments. Ultimately, I decided that was a challenge I wanted and needed to pursue. With the unending support of my family and friends, I got into medical school and graduated in May 2019.

I am now an internal medicine resident in San Francisco. My residency experience has been greatly different from what I anticipated. As the COVID-19 pandemic descended on our hospital, I found myself as an intern charged with facilitating end-of-life discussions through FaceTime, fully clad in personal protective equipment. Continually, I had to explain to families of the critically ill why they could not visit their loved ones. There was no instruction manual on how to have such conversations, but I know every day I channeled what I had garnered from my own family’s experiences with the health care system. I am unsure if I succeeded in the ways that Dr Tempero did, but I have never stopped trying.

In December 2020, I was triaging patients from the emergency department. While gathering the history on one patient, I asked “who is your oncologist?” When he replied, “Dr Tempero,” I froze. Surely it could not be the same doctor, the same one I had heard about since I was 8 years old? The one whose unique abilities I would always tried to emulate? When I left the room, it did not take much time on Google to realize it was. I shared portions of this story with my patient, who was extremely complimentary of her. That evening, when I got home, I called my mother to share this truly cathartic experience. Ultimately, it was she who implored me to personally reach out. I sat down at my desk and wrote her a note of gratitude. The following day I got an email notification while at work. I waited until I had a few minutes to read her response in privacy:

Dear Austin,

Your letter is, without a doubt, the most touching

letter I have ever received. I know how busy you must

be right now, and I was doubly honored to know that

you took the time to write this thoughtful message.

Thank you from the bottom of my heart.

I have had the privilege of helping so many patients

over the years and each one becomes a gift. I may not

be able to turn the course of their disease but I can

always make the journey easier.

On a Wednesday evening in early May 2021, a little over 23 years after she was my grandmother’s doctor in Omaha, I met Dr Tempero for the first time. I joined her and her husband at their apartment in San Francisco for a glass of wine. We discussed medicine, our mutual love of travel, and of course the unique situation that precipitated our meeting. I could easily perceive the qualities my family had always admired about her. She was interested in my story and my goals, but yet forthcoming about her life, family, and career. Her persona was welcoming, but yet demanded respect. Two hours later, she walked me downstairs and waited until my Uber arrived at her door. As I rode across the city, I contemplated the miraculousness of these events. I wished, as I always will, that I had more memories of my grandmother that did not center upon her illness, but the reality is I do not. What I do have is the memory of this encounter that has left me with a sense of inner peace and optimism, reassured that I am exactly where I am meant to be.

I write this in gratitude to a doctor, who had no way of knowing her kindnesses would have such lasting influence. Of course, I also hope to honor my grandmother’s legacy. I know she would be honored to see how her own misfortune somehow managed to be the genesis of such positivity in my life. I believe she would also challenge us all, as do I, to be like that doctor in Omaha.

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care.

You can find all of the shows including this one at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

With me today is Dr. Austin Price, a senior resident in internal medicine at California Pacific Medical Center, soon to be an infectious disease fellow at the University of Kansas. We'll be discussing his Art of Oncology article, “A Note of Gratitude”. Our guest has no disclosures. Austin, welcome to our podcast.

Dr. Austin Price: Thank you very much. Thanks for having me. I’m happy to be here.

Dr. Lidia Schapira: Let me start by asking if you are, in addition to a writer, also an avid reader?

Dr. Austin Price: Yes, in the past at least I have been somewhat stymied by going into residency, but in the past, I liked to read a lot.

Dr. Lidia Schapira: So, tell me a little bit about your past readings and maybe favorite authors or books, something you'd like to share with our listeners.

Dr. Austin Price: I like to read about medical history. And so, one of my favorite books actually is by Dr. Paul Offit, and it talks about the early days of vaccines and how there was, I think it's called The Cutter Incident, but it's a great book.

I may be misquoting the actual name, but great book. When I was in Baltimore, and doing my master's, he gave some guest lectures. And that's where I became acquainted with some of his work, I like reading that.

So, those are the kinds of things that I really enjoy. And then I think, of course, I have always really enjoyed F. Scott Fitzgerald, even from high school, and Hemingway.

Dr. Lidia Schapira: Very classically trained. Tell me a little bit about writing. Writing is a way of sharing an experience or perhaps processing a difficult encounter with a patient, is that something that you routinely do or have thought of?

Dr. Austin Price: Yeah, it's definitely become something that's been more robust as I've gone through residency. I think part of that certainly had to do with the pandemic, and just not being able to be as close with people and have those personal relationships. And I found myself kind of cut off, maybe from a support system that I would have otherwise had, being in California with most of my friends and family in the Midwest.

And so, I used writing as a way to kind of compartmentalize my feelings and my interactions with patients and to check in with myself. And I find that it's therapeutic and also enjoyable.

Dr. Lidia Schapira: That's fantastic. Let's talk about the essay that you submitted and we published in Art of Oncology, which is a way of honoring the memory of your grandmother, who had cancer when you were a child, and also talks about your sense of vocation and this ideal that was held up to you by your family of aspiring to be as empathic and wise, as a doctor, who is an oncologist who helped your grandmother. Let's start a little bit with your grandmother's illness and how you remember that now that you are a physician.

Dr. Austin Price: Yeah, certainly. I mean, I just remember as a child, her getting very sick, and finding out that she had cancer, and knowing that that was a bad thing, but not really knowing any of the details of it.

As it turned out, she had colorectal cancer, and had surgery, for a short time she seemed okay. And then she got sick again, this time with metastatic disease to the liver. And of course, she was very sick then and ended up seeking out a second opinion from an oncologist who becomes the person in the story that I write about, in Omaha.

At that time, there really wasn't anything that could be done to save her life, essentially. But the interactions that they had were very impactful to both her and the rest of our family. So much so that all through my life, my family members said, if you want to become a doctor, which I thought kind of early on, I did, that I should be like this particular person, Dr. Tempero. And so, she had just always been this kind of person on a pedestal, if you will.

Dr. Lidia Schapira: Let's talk a little bit about the impact that Dr. Tempero and her consultation had on your family. Can you tell me a little bit more about how they talked about that particular meeting?

Many of us who are in oncology and have been for a long time often talk about the fact that there can be a therapeutic relationship between the oncologist and the patient and the family that can actually help during difficult times and even through bereavement. But it's so interesting to me to hear you speak about it from the perspective of a family member. Tell me a little bit about how that relationship impacted the way the family understood the illness and how they went through their loss?

Dr. Austin Price: I definitely think that there was a therapeutic relationship established. And I think in a way, Dr. Tempero managed to be preparatory in the sense that she knew that the outcome was likely not going to be good.

I think she did that without ever being bleak or ever losing hope, in doing so she really kind of helped, in her own way, move us slowly towards accepting reality, and then learning how to move forward and enjoy the time that we had left together.

I think all of my mom's siblings remember her in the same way, they really trusted her in such a robust way that her assessment that there really wasn't anything else medically that could be done, really helped them to come to terms with it and to refocus their goals, and those goals being to spend as much quality time with my grandmother that they could.

Dr. Lidia Schapira: And as you've gone through your medical training, I imagine that they'll have to dangle this idea of this ideal doctor in front of you more than once. How have you interpreted or internalized this aspiration to also be wise, empathic and so kind to your patients?

Dr. Austin Price: Yeah, it's definitely something that my mother in particular is always reminding me to do, because it's not always easy, as we all know. And there are times when I'm frustrated and tired and all those sorts of things.

So, she and I've had many conversations where I'm maybe lamenting about feeling overworked or this or that. And she's always reminding me to be present and to realize that, although I'm tired that I'm oftentimes interfacing with people at bad points in their life.

So, I always try to keep that at the forefront of my mind and try to decompress before each patient interaction, in hopes that I can be at least to some degree like Dr. Tempero was for my family. I'm sure that I don't always succeed in the ways that she did, but I hope that I do most of the time.

Dr. Lidia Schapira: I assume Dr. Tempero would reassure you that even she may have a bad day or a bad hour in a day. Your essay has a moment of suspense and a twist in the plot when you find yourself now as a physician in an emergency room looking after a patient who tells you that their oncologist is none other than Dr. Tempero. Tell us a little bit about what that felt like?

Dr. Austin Price: Well, I mean, it was just altogether shocking, honestly, because I had never met her and I really had never even Googled her name in the past. She was just always this person that my mother talked about so much. And then I had come to a kind of honor but I assumed for all I knew that she was still in Omaha.

And so, when I heard this name, I thought, well, how many oncologists named Dr. Tempero are? Well, there's probably more than just her, but I immediately left the room and started to Google and realized, just quickly, that it was her or that I assumed that it was because she had done her training in Omaha at the University of Nebraska.

It was shocking and emotional too, I will say. I immediately remember texting my mom and being like, oh my gosh, this patient just told me that Dr. Tempero was their oncologist. And I have to go back in there and finish the assessment because I kind of had to leave the room to just decompress a little.

Yeah, it was a wonderful feeling and also just one of those moments where you're just like, life is so interesting in the way that you come into contact with people and in situations that are just so unique.

Dr. Lidia Schapira: And then you reached out to her?

Dr. Austin Price: I did. Yeah, my mom told me, she said, she may not have time to get back to you about this but you should at least reach out and explain how this made you feel. And thank her for the way that she treated our family and thanked her for the ways in which she or the idea of her has kind of impacted the type of physician that you aspire to be.

Dr. Lidia Schapira: So, you wrote to her, and she wrote you back. What was that like and what happened after that?

Dr. Austin Price: Well, I just remember being shocked that she wrote back so quickly. I know that she's incredibly busy. And so, I was very happy that she'd written back so quickly. Honestly, when it was written, this all happened at Christmas time. So, I wasn't able to be there because of COVID and working through the holidays. It was just the first time in 30 years that my mom hadn't seen me for the holidays.

So, she was emotional about that. And so, getting to read Dr. Tempero’s response to the family over FaceTime on Christmas, really was kind of like the best gift that they could have gotten. They really enjoyed it. That kind of helped to stifle the blow a little bit of me not being able to be there for the first time.

Dr. Lidia Schapira: I'm just getting teary just thinking about that scene of you're reading this message to the family over FaceTime, and then talking Dr. Tempero invited you to meet her, and you had a long conversation, tell us a little bit or share with us what you feel is appropriate so that we can understand how important that reunion was for both of you?

Dr. Austin Price: Yeah, sure. From the first response email, she said, 'I would like for us to get together and for us to meet in person when it's safe to do so', because when this interaction initially happened, none of us had been vaccinated yet, and so we're still in the throes of COVID and still petrified and all those things.

And so, once we had been vaccinated, I reached out to her and said, I actually have started to write this essay, and I just wanted to know your thoughts on it. And she read it and she said, and this was many iterations ago when it wasn't as good as I think it is now, but she was like, 'Oh, I'm very much in support of this and I'm very honored, and by the way, we're vaccinated now and it's time for us to finally meet.' So, we did. It was great.

I met her and her husband at their apartment in Mission Bay in San Francisco. We just had a lovely evening, had a glass of wine, some hors d'oeuvres, and just talked about this unique situation that had brought us together, and also talked a lot about my life and what I want to do in my career and my future.

She was more interested in me than sharing so much about her life, but was very forthcoming when I would ask her questions as well, then also just had this kind of commanding aura, but welcoming at the same time, just very likable. I don't know how to explain it, other than that it was amazing and I was so thrilled to experience it.

Dr. Lidia Schapira: I think you've explained it very well. It's a beautiful story for us to read, for all of us who have been in oncology for all these years, and those who are just starting, it's really inspiring.

We think a lot about mentoring our students or junior faculty, but the idea that we in our clinical roles, can also have sort of in a way an indirect mentorship, relationship with or an influence with other young members of the families is really beautiful and moving.

I thank you so much for having sent it to us and for sharing that experience. Is there something else, Austin, that you would like our readers and listeners to know about the essay itself, your family, or the intention that you had that brought you to not only write but share your writing so publicly?

Dr. Austin Price: Yeah, I hope to honor my grandmother, because I think it's been interesting, this experience brought me a lot of joy, and I think it brought our family a lot of joy.

The fact that that came from such a sad place and sad reality, I think is really great. For clinicians, it's just really important to realize how far-reaching our interactions with patients can be because we are seeing them, oftentimes, really in bad times of their lives, times that they're going to remember for a long time. And so, we can then be remembered in kind of good ways and bad.

I think it's so unique in the situation that in an interaction that Dr. Tempero had with my family, nearly a quarter-century ago, it only took the mention of her name, to bring back this whole flood of memories and spawn all of this. I think that's really cool and something that we should always be cognizant of. We have very far-reaching impacts for our patients. I just think that that's cool, and a good thing to be reminded of.

Dr. Lidia Schapira: I think it's very cool too and I thank you so much, Austin, for sharing your essay and for taking part in this conversation.

Dr. Austin Price: Thank you for having me.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology Podcast. This is just one of many ASCOs podcasts. You can find all of the shows at podcast.asco.org

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to ASCO's podcast series of cancer stories. I'm Dr. Daniel Hayes, a medical oncologist and a translational researcher at the University of Michigan Rogel Cancer Center, and I'm also the past president of ASCO. Over the next several podcasts, I'm privileged to be your host for a series of interviews with the founders of our field.

Over the last 40 years, I've been fortunate to have been trained, mentored, and inspired by many of these pioneers. It's my hope that through these conversations, we can all be equally inspired by gaining an appreciation of the courage, the vision, and the scientific understanding that led these men and women to establish the field of cancer care over the last 70 years.

By understanding how we got to the present and what we now consider normal in oncology, we can also imagine and we can work together towards a better future where we offer patients better treatments, and we're also able to support them and their families during and after cancer treatment.

Today, I'm fortunate to have my guest on this podcast as Dr. Saul Rosenberg, who is generally considered one of the pioneers of cancer chemotherapy, especially for lymphomas.

Dr. Rosenberg is currently a professor emeritus at Stanford University, where he served as the director of the lymphoma program for several decades dating to the early 1960s.

Dr. Rosenberg was raised in Cleveland, where he went to medical school at Case Western Reserve and followed that with an internship at University Hospitals in Cleveland. He then did his residency at Harvard's Peter Bent Brigham, now the Brigham and Women's Hospital in Boston, and completed a fellowship at Memorial Sloan Kettering in 1958.

He then moved to the west coast, where he joined the radiation oncologist, Dr. Henry Kaplan, to transform the approach towards lymphoma from one that was principally radiation-based to using radiation and combination chemotherapy.

Dr. Rosenberg has authored over 150 peer reviewed papers. He has edited several textbooks, in particular one of the classic textbooks on lymphoma. And his teaching and his mentoring skills are legendary among Stanford trainees and frankly as well as the rest of us.

Dr. Rosenberg has won more awards than I can count, but most importantly to me is that he also served as president of ASCO in 1982 and 1983.

Dr. Rosenberg, welcome to our program.

Thank you. I'm glad to be there. One thing you did not mention [INAUDIBLE] was I spent six years in the radiation oncology laboratory while I was in medical school. That helped start me on my career very much.

Actually, you beat me to the punch. I didn't mention it, but I was going to ask you if you had trained there.

In fact, that segues. I know you grew up in Cleveland. Can you tell us just a bit more about your background? I know that you entered college at a pretty young age during World War II and then had to step out for a while. Can you give us the background and your circumstances and what led to all that?

All that's true. I tried to get into medical school when I was 17 in order to not get into World War II. That wasn't successful at the medical school for various reasons. They thought I was too young and they'd [? hit ?] Jewish quota, so I dropped out for a while, went back to night school, and then reapplied when I was 22. They didn't accept me at that time because of my unusual activities, and so they assigned me to a research lab that I did not pick, which was the atomic energy research lab in Cleveland.

It had the initial goal to teach radiation oncologists and to use radioisotopes, but that set my whole career toward radiation. And during the two years in the lab and then four years in medical school, I studied radiation oncology, radioisotopes, tumors, and I developed a great interest in the lymphomas at that time.

So did you ever actually then do clinical radiation oncology, or this was all when you were in med school before you became faculty?

It was all before my faculty, but I've always been a member of the radiotherapy department. I've taken courses in radiation research and physics, and I'm an honorary member of the radiation societies.

That's terrific. And so that must have served you well when you worked with Dr. Kaplan.

It was necessary because I presented papers at the radiation meetings, and he recognized me, and when I was searching for a job and the one worked out perfectly at Stanford. And that's how we connected.

So can we go back for a moment? I'm very interested in these interviews in why, for example, you chose to go into medicine in the first place. What led to that?

And more importantly, especially in the 1950s, when there was no real medical oncology, what got you into doing medical oncology?

Well, medical oncology was all an accident because I went into this laboratory and studied radiation in tumors. Before I went to medical school, I didn't have any particular interest in that. When I was a youngster-- five, six, 10 years old-- no one in my family had ever gone to college. Nobody was a professional.

But the most respected man in our community was our primary care physician. And since I was a good student, my family and my teachers all encouraged me to try to continue to go to college and be a doctor. And that's what I did.

You sure did.

[LAUGHTER]

Actually, the other thing that was fascinating to me when I looked over your background was your days at Memorial. And so that must have overlapped for sure with Dr. Karnofsky. Can you give us some war stories of that time and what he was like?

Well, again, there was a great mistake that turned out so well. There was no oncology program when I left the Brigham, and I wanted to study chemotherapy and medical oncology. The only fellowship was called medical neoplasia, which I applied to at Memorial where David Karnofsky was.

I received that fellowship, and in July of 1957, I went to Dr. Karnofsky's office. And he said, "You didn't have a fellowship with me. You have one with Lloyd Craver."

So in fact I spent that time not with Dr. Karnofsky but with Dr. Lloyd Craver, who turned out to be the leading lymphoma specialist in the world. And I learned more about lymphoma during that year than anyone could possibly teach me.

I did, of course, know Dr. Karnofsky and during that fellowship period, I was acquainted with chemotherapy, nitrogen mustard, [INAUDIBLE] antagonists and [INAUDIBLE] antagonists. So it was a combination of some chemotherapy but mostly lymphoma research. And that set my whole career-- that mistake. I didn't have a fellowship with Karnofsky.

[LAUGHTER]

I actually always worry about someone I interview who knows exactly what they want to do. I usually say, you know, most of what I did was by luck. [LAUGHS] So sounds like you were too.

Oh, absolutely.

You know, with both of them, how are they putting things together for the treatment of one problem, though? Is it just let's pull stuff off the shelf, or was there actually some direction in terms of the science they understood at the time? What was the atmosphere at the time?

Well, it was very minimal. We had only three lymphomas that we knew we diagnosed-- giant follicular lymphoma, small cell lymphoma, and reticulum cell sarcoma, and of course Hodgkin's disease. But the pathology was so crude that there were very little specific therapies or much difference among the approaches to them. We, of course, used radiation therapy for local treatment.

And of interest was that with Dr. Craver, I would make rounds, and we would decide where to give the radiotherapy. We'd outline it on the patient with a red crayon, and we'd write a prescription for the radiotherapy and send them down to radiotherapy.

Now that's a remarkable story, because nobody nowadays could even believe that internists could do that.

It's unbelievable. Actually, I interviewed Dr. [? Hellman ?] for a previous one, and he gave a similar story that there were very few technicians, and you just kind of drew crayons on the patient and sent them down. [LAUGHS] It's a lot different than it is today.

Yes, it is.

That's amazing.

But the interesting thing was there were no computers at that time, and Dr. Craver's experience with lymphoma-- there were 1,269 cases that I reviewed for him and wrote a wonderful paper, I thought. It was published in Medicine in 1961 on 1,269 cases of a lymphosarcoma. And that set my whole career and my experience that was far above most other people of my age and my training. And that's what really made my career was that study.

Now, we had no computer, but we had a IBM cell sorter-- card sorter. And I completed 240 questions on each of 1,269 patients according to their charts, and the data I had was terrific.

So you did that with shoe boxes full of punch cards?

Oh, at least eight box-fuls because we had 1,269 cases-- three cards for each patient. But the card sorter could just spin out anything that I wanted to know and had so much data that there was no computer. And we had that-- was the first of the data systems that made it possible. And--

That's amazing.

It is.

And you did all the chart reviews yourself?

I did all of it myself because I was disappointed I wasn't with Dr. Karnofsky. But I made the best I could. And it was actually a wonderful experience with Lloyd Craver.

Now, were most of those patients treated with radiation or was chemotherapy part of the game yet?

Well, we didn't have much chemotherapy at that time. We had steroids. We had radiation. We began to have some Leukeran and Cytoxin by the time I left there, but most of it was radiation and medical treatments with steroids. And very few patients had prolonged survivals, except for the follicular lymphomas which have such a good natural history.

Yeah. You mentioned that the very few classifications of the lymphomas-- can you give us some insight into when-- I live in Ann Arbor, for example, so the Ann Arbor classification, of course, is near and dear to the hearts here. But how did that all begin? I know you were involved in that early on too.

Well, I did very much. And the important work was done by three people-- Henry Rapoport, who at the time was in Chicago, Robert Lukes, who was in USC, and the German group. And they began to separate out the different forms of lymphoma. Henry Rapoport described the difference between follicular and small cell. And Lukes was careful about the Hodgkin's disease.

So their classifications began to be used in the 1950s and in the early 1960s. And they make dramatic differences. Ron Dorfman was a student of Rapoport at the time, though he came from South Africa. And fortunately, he came to Stanford, and that gave us a really-- step ahead on good classification.

Eventually, there was great debate about which the right classification it was. And we did a study for three years comparing six classifications around the world and which one gave the most data. And I was the principal investigator of that, and that led to a unusual classification called the National-- I can't even remember the name of it now. But it was a very unusual name, and nobody adopted it. Eventually this classification was dropped, and the new classification came out with immune markers and made a great difference.

But that classification in pathology was the stimulus that led to the more modern treatments of that time. And that was one of the great advances that led to two important research studies-- one in Paris and one in Rye, New York, which were virtually entitled "The obstacles to the control of Hodgkin's disease." But the pathology classification systems facilitated that along with tremendous advances in radiotherapy.

And I would assume almost-- what's called precision medicine now and targeted therapies-- those allowed you to begin to separate out patients who really didn't need systemic therapy and those who were more likely to benefit from the chemotherapy part of it. That must have really been an eye opener for you as you began to realize that.

Well, chemotherapy began to become more successful, of course, for leukemias and lymphomas during that period of the 1960s-- the early '60s. But radiotherapy was the only successful treatment that could control disease for long periods of time until good chemotherapy and combination chemotherapy became available. But the radiotherapy advances really advanced the treatment of Hodgkin's disease and some of the lymphomas dramatically.

So that actually, in some ways, segues to my next set of questions. How do you get from New York to Stanford? You said Dr. Kaplan had seen you present. Did he see you as joining him as another radiation oncologist, or did he see you as bringing in the therapy to complement what he did?

Well, the truth is I was offered a job at Harvard by Farber, and he told me I could treat patients with cancer at the Brigham, but not lymphoma and leukemia. So then I went back to Cleveland, where they did offer me a job in radiotherapy. But the new chairman of medicine did not think that oncology was an appropriate field for medicine. So I had to call Henry Kaplan as a third choice. And he rapidly accepted me and insisted that I had a role in the department of medicine, which they gave me. So I had faculty appointments in both, which I still have today.

Why did Farber not allow you to treat lymphoma?

Because he thought it was his property. He didn't want it over in the other hospital.

Ah ha. That's-- he had passed away before I got to what was then the Sidney Farber Cancer Institute, but I've heard stories like that.

So when you got to Stanford then, how did you all start working at chemotherapy? I know that was before the time that the folks at the NCI had really reported the high response rates with combinations. You must have taken that along with you.

Well, I knew that, but the treatments with more than one drug wasn't really popular at least until the early '60s. When I got to Stanford, they put me in the hematology department where I was supposed to do hematology, which I only had minimal training in. But I had a lab in radiation oncology, and I was in the clinic with Henry Kaplan, and we decided that we would treat Hodgkin's disease because of the development in radiotherapy.

But I insisted that I would treat cancer in the department of medicine, and that was not popular anywhere in the country. And after they found out I couldn't do much red cell medicine, I started a program for cancer patients, and we needed a name for it.

And I got together with four people, BJ Kennedy, Paul Carbone, and the fellow at Hopkins-- what's his name? I'll remember it. But with four of us decided that we would have cancer treatments in the departments of medicine, and we would call it oncology. And that's where the name began.

And several of them at Hopkins and at Minnesota had separate departments of oncology-- eventually departments of cancer. So it was very unpopular in departments of medicine, and hematologists to try to prevent us from treating cancer in departments of medicine for at least 10 or 15 years.

Gradually, we established what we were, and now it's one of the largest divisions of most departments of medicine.

Yeah, I think most of our younger colleagues would be surprised by that. I came in in the early '80s and was struck by the fact that most of the major departments of medicine had given oncology away because they felt that the smart folks were working on in red cell stuff, as you pointed out, and the dumb folks could go get 5-FU. What they didn't realize was that there was a tsunami of academic interest and advances just down the pike. And it's interesting that you had to go make your own department just to be able to do that.

What were the facilities you had at Stanford to give chemotherapy? Did you just have a nurse that followed you around and gave it, or did you actually have a fusion space or--

Nothing like that. I separated from the hematology clinic, and I would see patients in my own room. There was only one room. I found one fellow who had trained as an [? NCI ?] named Richard Shaw. And we began treating patients with breast cancer and ovarian cancer and children with various childhood malignancies and leukemia.

And curiously, when we gave nitrogen mustard, we did it in the hallway of our clinic, and start an IV and mix up the nitrogen mustard and inject it rapidly.

There were no infusions facilities whatsoever. It took many months and years to develop what you now think of as a cancer clinic.

So you mixed up your own chemotherapy?

We did, and I treated any kind of cancer, including children. And we began to see some responses. But the drugs began to come in in which we had a little bit of benefit, but before we could get combination chemotherapy, especially for the lymphomas and leukemias, we didn't have a lot of success.

And how did you get Referrals As the department of medicine didn't like what you were doing, did they all come from the surgeons and the radiation oncologist or--

Yes.

Where'd they come from?

Mostly referrals, but also Stanford began to let it be known that we would see patients with cancer and make a diagnosis and refer them to the proper departments for treatment, and that we had medical treatment. So we attracted patients from the community. Stanford didn't have a big clinical program until it was transferred from San Francisco, but our cancer program became known.

I must give great credit to Henry Kaplan, who was a tremendous power and leader of the field. And that attracted a lot of cancer patients to Stanford. And of course, you know that Henry Kaplan and his colleagues invented the linear accelerator, and that made a huge difference in the way we treat patients even today. So he and Ed Gintzon, who is a linear accelerator man, invented the linear accelerator which provided us with super voltage therapy of one million electron volts or more. And that completely revolutionized the treatment of cancer.

Yeah, even when I broke in in the early '80s, that was not universally around, but you would see patients who basically were put in front of the machine. They turned it on for a couple seconds-- not at Harvard but outside the Harvard. I know nothing about radiation oncology, except I knew that wasn't right. [LAUGHS] And so we owe Dr. Kaplan for lots of reasons, really-- in great debt, but that probably is one the greatest step forwards.

Can I ask another question. I've always been struck that you were one of the early proponents of randomized trials of lymphoma. That must have taken a lot of courage.

Well, it was necessary for me because Henry Kaplan wanted to use very broad fields in high doses, and he thought that he was improving the cure and survival of patients.

And I admired that and accepted it, but I thought that he was giving too much-- too wide a field and too high a dose for various reasons. So I insisted that if I were to see patients in radiotherapy that we would do trials that would compare two strengths of treatment primarily with radiotherapy-- one with very extended fields and high dose and to just the involved sites. And that's what my program was. And he wanted to extend the fields beyond where the disease was.

And we did randomized studies beginning in 1962. They were one of the very first clinical trials that were done in cancer and certainly the first ones in lymphoma. And those clinical trials modified and went on for years. We gradually proved that both of us were correct. Neither of us had an advantage over one or the other, but we learned a great deal about the diseases and their natural history and how to modify the treatments. And of course, eventually chemotherapy came in, and we combined it.

But it's a very long story the trials continue to today. We've treated over 3,000 patients with Hodgkin's disease on these trials. And we couldn't have been more successful.

Yeah, I think and again that was just about the time that Dr. Fry and others were starting the cooperative groups that could do randomized trials in those days. And you couldn't have had many role models. And again, "courage" is the word I coming up with to get patients to agree to be in a trial where the treatment wasn't assigned until after they signed up. These days we take it for granted, but it was not then true.

Well, it's true, but also Dr. Kaplan and I were very good clinicians, and patients trusted us. And they all accepted going on trial as long as both of us agreed that we didn't know the best thing to do. So that was the basis for a randomized trial. And our numbers of our patients were very small-- would never be accepted today as a trial. In fact, we could-- our statistics would not really show the advantage of one treatment over the other.

But what our statistics showed was we had patients surviving with a relapse free period-- a plateau-- that went beyond 10 years. And that was unknown in Hodgkin's disease at the time. It became unknown in large cell lymphoma as well as at the time.

The late Jim Holland who I loved and helped mentor me in some ways, but when I first joined [? TLGB ?] was sitting in the back of the room when I was presenting the proposal for randomized trials and yelled from the back of the room, "Hayes, if you need a statistician, it's not worth doing."

I said, "With all due respect, Dr. Holland, I think it is-- we're doing. But we need a statistician for that." [LAUGHS]

All right, so Dan, I had this same argument with J. Fry, right? He said that it was a scandal to have a control group. And I remember in public meetings, I would tell him only you and God know the difference between these two groups.

[LAUGHTER]

We argued for 50 years until he finally came to Stanford as a visiting professor, and we connected and admired each other's work tremendously.

Well, justifiably.

I want to ask another question. You've been involved with ASCO almost from the start, I think, and I noted you were present in the early 1980s. What made you run for president of ASCO? In those days, there wasn't much of an organization. It was 3,000 or 4,000 people. What did you see in ASCO that maybe others didn't at the time?

Well, I was forced to join by Vince DeVita. He was a member a few years before I was, and he talked about what he thought was right. And I thought that I was right. But the society made a big difference about bringing us together. And then Al Owens, who was at Hopkins, became president, and he invited me to be on the board and then to be his program director. So that's how I got in. Both DeVita and Owens forced me to join them. Then I became a member of the group and committed to it because there was so much value in sharing our information and data.

Well, I don't want to put you on the spot. This year we had 43,000 attendees at the meeting, I believe, in Chicago. Do you recall what year and where your first meeting was, and how many people were there?

I can't recall.

[LAUGHTER]

I think when I was president, there were about 8,000 attendees at the meeting. And we all went from one city to the other-- San Diego, New Orleans, St. Louis, San Francisco. But it got out of hand when we got up to $25,000, and the only place we can meet was in Chicago, which was a great loss because Chicago is a great city, but it was great fun to go all over the country.

Yeah, I think we'd agree with both of those, but Chicago handles this pretty well. So it's worked pretty well.

We're starting to run out of time a little bit, and I want to ask you a big picture question. And you've hit some of these. So what really is your legacy? How would you like the world to remember what Saul Rosenberg has contributed to the field? Is it your science or the administration issues you set up so that people actually accepted our field or the teaching and mentoring? I mean, you've mentored, in my opinion, some of the great oncologists in the world. How do you think this will come out for you?

There's only three things that I'm going to leave after me-- my children, my students, and my patients. And my advances for treatment were tremendous but are all now overturned and built upon. But my students, whether it be medical students or postdocs or my colleagues, were my greatest advance. I am so proud that they have succeeded so much. I felt that I have been a trunk of a tree, and every branch that comes off carries twigs and flowers and plants and exaggerate or emphasize-- multiply what I have done just because I started them off.

So nothing has been more important to me than to be a good teacher. And my students all know that I'm a wonderful doctor. That's what they tell me. And to be a careful, caring physician, how to talk to patients, how to examine them, how to tell them good news and bad news-- the skill of being a medical oncologist, and actually to be a physician in general is such a joy. I mean, to have these people depend on us and believe in us the moment you walk in the room, if you're gentle and you know how to touch them and to talk to them-- this is such a joy. I can't think of any other word in being a physician but especially being a medical oncologist. It has been a joy.

And are you still seeing patients?

I saw several this week. I've cut way back.

Yeah.

I see patients every other Monday. I see mostly my old patients or recent Hodgkin's patients, but gradually fewer and fewer. But there's-- I have 20 patients, perhaps, I won't give up. None of them have lymphoma anymore, but they all have complications of treatment, and they will not let me retire.

And 60 years ago, did you think you'd say that you have a bunch of patients who look like they're cured of lymphoma?

Never.

Yeah, it's something else.

Well, Dr. Rosenberg, you've been a great role model for all of us in the field, and we very much appreciate what you've contributed. I have to say your final statement is very similar to what other people have said to me as well-- George Canellos and others-- about their greatest accomplishments are the people they trained, and those of us who you have trained take that very seriously.

So thank you.

It's a great honor to talk to you. I hope the new therapies-- immunotherapies-- are going to make a big difference. I think they have promised to do so. And sometimes I get to be cynical. I mean, I've been through about six waves of great enthusiasm in treating cancer, chemotherapy, immunotherapy, the old-time advances in radiotherapy, genetics. And gradually there's been improvements but not the great breakthroughs that I want to see. Maybe this new approach will make a difference. I hope so.

Yeah, it looks like it. I said to a first year fellow last week that never in my lifetime could I think I'd say it looks like 20% of people with metastatic melanoma may be cured, and that looks like what's happening. That's pretty exciting, I think.

How about 90%--

Yeah.

--of Hodgkin's patients?

Well, actually a lot of that you had already knocked off before I got in the field.

[LAUGHTER]

Yeah, and I thought this is going to happen again. And it didn't for quite some time. But I agree with you. I think things right now are really, really starting to happen.

And we actually have just scratched the surface of the immunotherapy world. I think there are a bunch more checkpoints that are going to be discovered and therapies for them. So the toxicities are considerable, but as Dr. Fry always taught us, "Cure the cancer first, and we'll figure out how to take care of the toxicities later." And I think that's a pretty good strategy, actually.

Thank you. I actually--

[INAUDIBLE] Yeah.

OK, that's all. Thank you very much. I really enjoyed this.

You know, I've told other people it's like if I hop in a cab with Saul Rosenberg, what would I ask him for the next 35 or 40 minutes on the way to the airport? So this is fun for me.

All right. Thank you for asking me.

For more original research, editorials, and review articles please visit us online at jco.org. This production is copyrighted to the American Society of Clinical Oncology.

Thank you for listening.

Dr. Hayes interviews Dr. Anne Moore on pioneering the field of survivorship.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

TRANSCRIPT

SPEAKER: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

DANIEL F. HAYES: Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

[MUSIC PLAYING]

Today, my guest in this podcast is Dr. Anne Moore. Dr. Moore has been instrumental in the field of breast cancer, especially related to her clinical and educational contributions to our field. Dr. Moore was raised and spent much of her formative years in Peru. She received her undergraduate degree at Smith and her medical degree at Columbia University College of Physicians and Surgeons.

She completed a residency in internal medicine, as well as her hematology and medical oncology fellowship at Cornell, where I believe she's basically spent the rest of her professional life now as a professor of clinical medicine, and a director of the Iris Cantor Weill Cornell Breast Cancer Survivorship Program at the Weill Cornell Medical College of Cornell University. Dr. Moore, welcome to our program.

ANNE MOORE: Thank you, Dan.

DANIEL F. HAYES: I hope I got all that right. I think I did. Very happy to have you. And I consider you a real pioneer in that regard, being a woman physician in the decade and decades when that wasn't very common, and a woman oncologist, when it was almost unheard of, frankly.

So I know you've probably got some great stories about your med school class, where I think you were 1 of 10 women in your class or something like that, and in your training. Can you fill us in on what it took for you to become a physician?

ANNE MOORE: Well, I must say, I went to all women's college. I went to Smith College. So coming into a class where 10% of the class the women was a big change for me, but a very exciting one. The women, we respected each other. We were respected by our male colleagues. We were well-treated. We were included at Columbia.

The faculty were always gracious. We didn't have a sense of being excluded. So it was very-- it was a fabulous place to be and very exciting.

DANIEL F. HAYES: Did you feel encouraged to pursue your ambitions? Or were there efforts to pigeonhole you into places that were better for women that you might not have wanted to? For example, I interviewed-- I did interview Clara Bloomfield before she passed away. And she made it clear that the things she wanted to do weren't considered ladylike where she trained, but she did it anyway. Did you run into that?

ANNE MOORE: No, we didn't. I remember the head of orthopedics speaking to me about an orthopedic fellowship. Some of my classmates did become pediatricians, which of course, was a typical field for women. But I was interested in hematology/oncology even in medical school. And there was never a sense that that was not an appropriate place for me.

DANIEL F. HAYES: Well, that's good to hear. I also know in a chat you and I have before this that you were telling me, by the way, I Googled you. And I found your original New York Times wedding announcement. I won't betray the date, but you had a very nice picture. You looked very young. You told me an interesting story about how much time you got off for your honeymoon.

ANNE MOORE: That's right. We got married over a Labor Day weekend so we could get an extra day. And I had to go to my chief resident, whom I called Dr. Steinberg, and request not just a two day weekend, but a three day weekend. There was a lot of thought, but my fellow interns jumped in and covered for me for that great event.

DANIEL F. HAYES: Those are different times, that's for sure. So I want to talk a little bit about your career. I know in the early 1990s, you began a multidisciplinary breast clinic at Cornell, which at the time, even in the country, was pretty unusual. I'm going to throw out my mentor, Craig Henderson, had started one in the early 1980s in Boston. But now it seems like everybody has a multidisciplinary clinic for every disease in oncology. What made you think that was a good idea then?

ANNE MOORE: Well, it was a very practical idea, but we saw a patient for a new diagnosis of cancer. And at that time, I was already becoming very interested in breast cancer. And the patient would come with her slides, with her mammograms. And I would run to surgical pathology, look at the slides, run over to the radiologist, interrupt them to look at the mammograms, run back downstairs to see the patient. And each specialist that I saw was teaching me so much while I was there, just looking over the microscope or looking at the screens.

There's too much running around, number one. We all need to learn from each other. And it would certainly benefit the patients. And the decisions were becoming, at that time, a little more complex. We were beginning to think about adjuvant chemotherapy, adjuvant radiation therapy for the new class of patients that had breast conservation. So it was clear that we had to get together.

We realized that we had to speak to each other and it would be much easier if we were all in one room. So we started, in 1991, picking up illustrative cases. And we didn't discuss every case by any means. And we would talk to the radiation therapists, the pathologists, the radiologists ahead of time. They would prepare their sections, and we would all meet.

The joy that we had of doing this and the excitement in those first few meetings, it's the first time we had ever had a meeting like that. And everybody was very excited to be there. And we met solidly up until today with those multidisciplinary meetings. They have become much more common. And now the group tries to present every case in some form of a multidisciplinary format. But those early tumor boards were enormously important and exciting for us.

DANIEL F. HAYES: And who were we back in--

ANNE MOORE: It was basically the surgeons, of course, played a big role, the medical oncologists, the radiation oncologists, the pathologists, the radiologists. And they were sort of the center of the group. We brought the nurses. We brought-- we didn't have genetic counselors involved at that time. We certainly do now.

If we had special issues, we would bring in a specialist to help us, a gynecologist, for instance, or a gynecologic oncologist if we had a case that involved removal of the ovaries or risk of uterine cancer, to talk to us. We had the obstetricians come with our first case of giving chemotherapy during pregnancy back in 1991, 27-year-old woman with an inflammatory breast cancer. We needed to give chemotherapy in the six month pregnancy. We had never done it before. And we had a conference including the obstetricians, again, all together in one room.

And then, I had the practice of scheduling a telephone call with the patient who was presented. Because very often, they were my patients. I was the person doing the most with breast cancer. We would have a scheduled telephone call the night of the conference after the conference. And I would review who was at the conference and tell them what the recommendations were. And sometimes, we had two recommendations, one from one group, and one from the other. And I explained that to the patient. And of course, they were thrilled at the idea of all those people sitting there thinking about them.

DANIEL F. HAYES: Was the surgeon Mike Osborn?

ANNE MOORE: Michael Osborn was later the chief of breast surgery. The original surgeons were really, our private practitioners. Because at that time, most of the surgery was done by private practitioners. And most of the medical oncology, primitive though it was, was also done by private practitioners. I was one of the first to be a full time employee of the hospital doing medical oncology.

DANIEL F. HAYES: Wow. In Boston, it was interesting. There was a, I won't call political split, but there was reluctance among some of the surgeons to engage in such an activity because they felt it would take away their autonomy and they didn't need it. And others who wouldn't miss a week, who loved it. Ultimately, everybody joined. But did you run into that as well, people who just didn't want to do this?

ANNE MOORE: No. I must say, our surgeons were eager. Because this was the time when the question about breast conservation was coming up from the patients. And these are surgeons who all had trained in the radical mastectomy. And New York City women weren't keeping their work quiet. They were really in there, saying, what do you think about breast conservation?

And I must say, the surgeons at our hospital-- wasn't true probably at every hospital-- were willing to listen, but they hadn't had the experience of breast conservation. And that's one reason why they were happy to have the multidisciplinary group discuss that.

DANIEL F. HAYES: So you must have been at the same time or just before that, this was started at Memorial as well. And I know that then it became that. Was there a citywide breast cancer group that met routinely?

ANNE MOORE: Memorial was later with the multidisciplinary tumor board at their hospital, as were the other hospitals in New York. However, we did meet together starting around 1971 with the New York Metropolitan Breast Cancer Group, which was a multidisciplinary group of the surgeons, oncologists, pathologists, the same group that we were meeting with on a smaller scale.

And this was an enormous benefit to the doctors treating breast cancer in New York, that we were able to not only hear our own group, but we could hear the doctors from Memorial, from Mount Sinai, from Columbia, from Albert Einstein, from Montefiore come. And we would meet together. We'd always have a social hour.

They like their scotch, these surgeons. They like scotch. So we would buy the scotch.

DANIEL F. HAYES: That must have been a real cast of characters. Was that, like, Jerry Urban in those days?

ANNE MOORE: It was just after Jerry Urban. It was just after Jerry Urban.

DANIEL F. HAYES: After him? Wow. And how about Ezra Greenspan? Would he come to that?

ANNE MOORE: Ezra had his own ideas. He was not so interested in this group, but he was just a little bit too early.

DANIEL F. HAYES: And could you get Jim Holland to come to that?

ANNE MOORE: The answer is Jim Holland was also not someone who felt he needed to hear a lot of opinions about management of cases. But on an individual basis, Jim Holland was very helpful with patients.

DANIEL F. HAYES: I would have loved to have been at those meetings. That sounds like a lot of fun.

ANNE MOORE: It was great. And we still have them to this day. We meet four times a year with an annual meeting on one Saturday every year.

DANIEL F. HAYES: And I know now that the last decade or so, you've really focused on survivorship as well as your breast cancer work. I talked to Patty Ganz as part of this series. And in my opinion, she really began the field of survivorship. She started thinking about it 25 years ago. But you've really been a mover and shaker now, especially, I think, in the New York City area. Can you tell us about the clinic you've started and how that works?

ANNE MOORE: Well, the survivorship has always been interesting to me, partly because I started so early giving chemotherapy, for instance. And the patients, many of them, had early stage II or stage I breast cancer. And 10 years has gone by, 20 years, 30 years, some cases, 35 years. And they still come to see us once a year. And I became more and more interested in what was going on with them, as well as obviously, with the new patients and the new treatments.

So it's always been an interest on an informal basis. I have followed Patty Ganz wherever she goes. I'm always asking her advice. I go to any lecture that's anywhere near me.

DANIEL F. HAYES: And I'm pretty sure she stays as late as she needs to and gives it to you well. I've never seen anybody as gracious as she is.

ANNE MOORE: Absolutely. Absolutely.

DANIEL F. HAYES: Let me ask you. This is an opinion question on my part. There are three models. One is that we just keep our patients as long as we're alive and they're alive. The second is that we start separate survivorship clinics, probably run by not by us. And the third is we say you've had enough of oncology. Go back to your primary care. And we trained our primary care doctors to be the survivorship. Which of those do you prefer?

ANNE MOORE: Oh, I think about it a lot. Our primary care providers or gynecologists, to whom we could refer patients, especially our very early stage patients after, let's say, five years for their follow-up, I think they're very happy to have an oncologist on board. They have questions themselves. They don't have the confidence that they're giving the best follow-up, whereas of course, they are. But they're anxious that they don't know how to do it.

So I think if we're going to hand them over-- that is, the patients-- we really have to prepare the gynecologists and primary care providers with what we think is the most helpful way to follow these patients. And I don't, at least in New York, we have not been good about that part. I know other programs are trying hard to educate their primary care providers to take these patients back in.

I think it depends a lot on who's available. In New York, we have a lot of oncologists. Some of the oncologists will continue to follow their patients for the rest of their lives. Many of our oncologists are finding that they just don't have enough chairs in their waiting rooms to continue to follow the patients. And they want to hand them over. The patients themselves would like to stay with a breast cancer specialist or a special clinic for breast cancer survivors. And that's the model we've used. And some institutions have made it a nurse practitioner program, which I think, again, in the right situation, is certainly suitable.

DANIEL F. HAYES: Yeah, that's what we've done, sort of a hybrid. It depends on the patient, depends on other factors. By the way, I found this is a wonderful problem to have. I was talking to a patient a few years ago. And I was saying, you can just go back with your primary care doctor. You don't need to see me anymore.

And she said, no, I want to stay with you. And I said, well, the problem is there are too many of you for me to take care of. As soon as I said, that I thought, no, no, no. That's not a problem because there's too many of you for me to take care of. So we've all come up with it.

All right, to move on a little bit, you've already kind of alluded to this. But why oncology, and why and when breast cancer? I will tell you that I read your CV and I saw your first paper was titled "The Development of Neural Control of Elementary Motor Function in Vertebrates." And this, in surgical journal, a far cry from breast cancer. And I know some of your earlier work as a fellow was in hematology and platelet function. So when did you change gears?

ANNE MOORE: Well, I did my fellowship in 1973, 1974, finishing in '75. And really, the work in solid tumor for oncology wouldn't have filled up a half day in the clinic. We had 5FU for colon cancer. We didn't treat lung cancer with chemotherapy. Those were two of our top cancers. And breast cancer pretty much was treated by the surgeons. The surgeons had a surgical oncology clinic where they give their 5FU to the breast cancer patients.

So they're really, or they did, of course, the oophorectomy followed by adrenalectomy followed by hypothesectomy for the estrogen receptor positive from their patients whom they didn't know whether they were estrogen positive or not. So there wasn't much to do. And so hematology, I really took a hematology fellowship later on called hematology medical oncology.

But it was such an early time. What happened there was that all of a sudden, around 1976, I think it was, right after I finished my fellowship, came the reports of adjuvant chemotherapy improving disease-free survival for node positive patients. All of a sudden, these were now healthy women who'd had a mastectomy, most of them. And somebody had to give them the chemotherapy.

And my first case was a doctor called me, a surgeon. And he said-- I hadn't really known him. He said, is this Dr. Moore? I said, yes. He said, I got a lady here. She just did her surgery. She wants a lady doctor for therapy. I said, great. I'll do it. So it was my first oncology patient. And she was exactly my age in her 30's. And I gave her the adjuvant chemotherapy, trembling.

My hands were trembling when I started doing it. We gave, of course, our own chemotherapy. And she did well and went on to live about 30 years, and did die of metastatic breast cancer.

DANIEL F. HAYES: So you mixed up your own chemotherapy and gave it yourself?

ANNE MOORE: Oh, sure. Yeah, absolutely. There was nobody else to do it. There were no nurses who specialized in oncology. So we mixed it up. While we sat and talked to the patient, we shook the bottle of chemotherapy on the desk, took a syringe, drew it up, and put on a little butterfly needle and pushed the chemotherapy.

DANIEL F. HAYES: I hope there are young people listening to this.

ANNE MOORE: No worries, no nothing.

DANIEL F. HAYES: I mean, the flip side is I think they're overwhelmed with the vast amount that there is to learn now. As you pointed out, when you started, it was 5FU. On the other hand, I don't think they realized how difficult it was to be an oncologist in those days. You must have been in one of the first rounds of the boards that BJ Kennedy pushed through.

ANNE MOORE: The first round of the medical oncology boards, I was. I wasn't in the first class, but I was pretty close to it.

DANIEL F. HAYES: Yes. And then you sat on the ABIM for a while, correct?

ANNE MOORE: I did. It was 10 years for the ABIM on the hematology board.

DANIEL F. HAYES: Oh, really?

ANNE MOORE: And then I chaired the hematology board. And by the end of the time I was chairing the hematology board, I really was pretty much just doing breast cancer. Well, I was still doing sickle cell disease, thalassemia, breast cancer, lung cancer. And during those 10 years, slowly drifted just into breast cancer. I just scraped through as chair of the hematology board.

DANIEL F. HAYES: That's fascinating. So I'm going to take you way back now. Tell me about why you were in Peru. Were you born in Peru?

ANNE MOORE: When I was two years old, my father worked for WR Grace and Company, which was Grace Lines at that time. And they were very active in South America. And he was sent to Lima, Peru. And he went there with four children, came back with five, had a sixth later on. And we just went along, started school there, and then came back to the states.

And then I went back right after high school and worked in a medical clinic outside of Lima, and what they call a barriada, which is a poor area where very, very poor people lived. I said, I would love to work in a clinic. I had been a candy striper, that was my experience. So they let me work there.

And literally, they would give me syringes. I don't know what was in the syringe and they taught me to give injections to these patients. I had no idea what I was doing.

DANIEL F. HAYES: I suspect you did not have malpractice insurance.

ANNE MOORE: There was no malpractice insurance involved in these situations. But I sure learned a lot, loved it.

DANIEL F. HAYES: And have you been back on medical trips or anything to Peru?

ANNE MOORE: Not to Peru, no. I haven't been back to Peru since that time.

DANIEL F. HAYES: Wow. That's fascinating. All right, another question that I've been dying to ask you, I'm going to call it an obscure role you've had, which has been the president of the American Clinical and Climatological Association. A very interesting group, to which I frankly belong. But it is the oldest honorific society in America, I believe. Is that true?

ANNE MOORE: It was founded in 1884.

DANIEL F. HAYES: Can you just give-- I suspect very few people on this call have ever heard of it. Can you give people what's the climatologic about? What's the story on this organization?

ANNE MOORE: The American Clinical and Climatologic Society was actually founded in 1884 as a group to study climate. And the reason they were studying climate was they were trying to figure out how to treat tuberculosis. So they figured it had to do with climate. So they studied being near hot springs, being near cold springs, being in a warm climate, being in a dry climate, and gave papers on that subject.

It was an all-male group for many, many years. The first women were elected around the 1980s. The wives were invited early on to come to the meetings and to sit in on the lectures, but they had to sit in the back rows of the auditoriums. There was one woman member, and then pretty soon, there were two women members. Then I came along as the next wave of women in the American Clinical and Climatologic.

And the group has no longer concentrates on tuberculosis. It's a very diverse group with very different medical interests. The vast majority are internists. We meet and listen to papers. and the papers are from all different fields, which again, for an oncologist who loves going to ASCO and listening just to the breast cancer talks, it's really exciting to hear the latest in kidney disease, the latest heart disease.

Perhaps one of the medical doctors who's interested in history of medicine will give us a talk. So it's a very varied group, different from our usual meetings. And everything is published in the transactions, which is on PubMed. And the papers are absolutely first rate.

DANIEL F. HAYES: Yeah, I have to say, I've loved going and listening to things I know nothing about. One talk was on the importance of the oak tree in history. Because we built ships out of oak trees, they made all kinds of things, and how that then related to medicine. I'll never forget that.

ANNE MOORE: That's right.

DANIEL F. HAYES: OK, I want to end up with one other. It's timely, and I understand that when you were a resident, you worked with the now legendary Tony Fauci. How did that happen?

ANNE MOORE: Tony was at the National Cancer Institute, the NIH. He had been at Cornell. They invited him back to be chief resident. He came on July 1 and I was his assistant chief resident. So we shared a very small office, as chief resident and my entire house staff just loved Tony. We would do anything for him.

He was smart. He was fair. He was hard, hard working. Working next to him was absolutely a joy. It turns out, I didn't know at the time, and I wish I had, his father and mother graduated from the New Utrecht High School in Brooklyn in 1928. They had lived in Bensonhurst. Well, my father graduated in that same class and was class president. So I know he knew the Fauci's, mother and father.

And I just wish I had known, because of course, that generation has gone now. But they all were alive at that time.

DANIEL F. HAYES: He's been kind of busy lately. I don't know if you've heard, but maybe when this all boils over, you can have dinner with him and ask him that question.

ANNE MOORE: A Brooklyn reunion, absolutely. But we loved him as a resident, as you can imagine.

DANIEL F. HAYES: So I want to finish with the work you've actually done for ASCO. You are a fellow of ASCO. And I'm sure you're proud of that. You should be. And you've had a lot to do with the self-evaluation program. And I know you've been a mentor for the IDEA program. You were one of the lead of the leadership development program. And now you're on the board for the Conquer Cancer Foundation.

And would you just give a few-- this is a little self-serving because I'm one of the foundation's greatest supporters. The stuff they do is amazing. But tell us a little bit about the Woman Who Conquer Cancer that Sandy Swain has started.

ANNE MOORE: Women Who Conquer Cancer is a very focused initiative from the Conquer Cancer Foundation, started by Sandy Swain, to try to support with young investigator awards, with career awards, specifically, women. And I think it's so important. The ones I think are the most important are the young investigator awards for women who are coming out of their fellowship. Maybe they're married. Maybe they have a baby at home. They've got their hands full.

And to have somebody recognize their work and say, we're going to support you, I think, is fabulous. I think that's a very hard time for women. They can begin to flounder right at that moment. And there's the Women Who Conquer Cancer awards to be able to focus on them.

DANIEL F. HAYES: It is their most vulnerable time. And it's actually not a lot of money, but it keeps them alive. And all they got to do is get one paper with their name on it, and we got-- and they're hooked. And I've had two or three now who've had them. And they're wonderful awards. So for those of you who are listening, sit down and write a check to the foundation.

ANNE MOORE: That's right. Absolutely.

DANIEL F. HAYES: I'm shameless. Well, that's about all. We've run out of time now, unless there's any other great anecdotes or anything you'd like to share with us with your career.

ANNE MOORE: No, just how important ASCO is, and very central to my career. And I hope anybody who's listening appreciates ASCO and the opportunities to serve on many, many, many of the committees and facets of ASCO.

DANIEL F. HAYES: It's a lot of fun. Thank you for the shout-out. Well, thanks for taking your time to speak with me today. You've been very important to our field in general and to especially women in New York City with breast cancer. I don't know anybody who doesn't know of and respect Anne Moore if they live somewhere in the New York City area, let alone the rest of the world. So thanks for your time. I very much appreciate it and look forward to seeing you in person when this COVID thing goes away.

ANNE MOORE: Thank you, Dan. And thank you for doing this series.

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DANIEL F. HAYES: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoy what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows and podcast.asco.org.

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"A Life and a Death in Haiku," by J. Russell Hoverman: a brother shares haikus and photos dear to his family around his brother's end-of-life care.

TRANSCRIPT

A Life and a Death in Haiku, by John John Russell Hoverman, MD, PhD (10.1200/JCO.21.02835)

My brother, Jim, was diagnosed at age 73 years with colon cancer metastatic to the liver, lymph nodes, and lungs. He and his wife were avid hikers and after retirement had hoped to visit as many national parks as possible. Big Bend National Park in Texas, along the Rio Grande River bordering Mexico, at over 800,000 acres, is one of the largest and least-visited parks in the country. The park has vast expanses of desert and high mountain islands, with some peaks over 6,000 feet. We had hoped to have Jim visit us in 2020, but both cancer and COVID-19 interfered until this past spring when we were finally able to arrange a trip to the park. It had been a few years since I had last seen Jim at our most recent family wedding. When he arrived in Austin, he appeared gaunt and frail. He had lost his taste, and many foods burned his mouth. He had lost weight and was weaker. He barely felt his feet. He struggled to just get through the day. Even so, he hiked up to a promontory overlooking the Rio Grande one day and into a canyon the next and seemed to get stronger as the week went on (Figs 1 and 2).

While in Big Bend, we talked about how he wanted to be remembered. Neither of our parents left tangible markers of their deaths. There were no gravesites, only scattered ashes in places without names. We discussed having a marker, a plaque, a touchstone, or maybe a bench at a favorite park, a place that could be visited by family and friends. This loss of continuity is likely a result of our culture—urbanization and the fragmentation of families. This is in contrast to The Day of the Dead (Dia de los Muertos) celebrated in Mexico and much of the American Southwest, where families decorate cemeteries and have annual gatherings to remember deceased relatives and friends. We forget, or perhaps never knew, how important this can be.

As an oncologist, I saw the wide variety of ways in which people died. A few years after I finished training, I joined a practice in a small town in Oregon with a large Mennonite community. One of my first patients was a church member with metastatic ovarian cancer that was no longer responsive to treatment. She required near constant attention for pain control, and the nursing facility associated with the Mennonite Church, primarily staffed by fellow church members, was her best option. My patient knew all her caregivers, and they knew her. It was as if she was receiving terminal care for her cancer by her sisters. This may have been the first time I attended the death of a patient outside of a hospital. Given that experience, I became an ardent supporter of hospice organizations, many of which were just starting. I knew that Jim was not far from the end of his life and that he wanted to be able to make his own choices, even to the point of getting it over with. We both also knew the impact of sudden, unforeseen, untimely deaths in our own family. I had hoped that Jim could be comfortable and able to participate with us until the very end. This most likely meant involving hospice care.

By summer, less than a year after his diagnosis, chemotherapy no longer controlled his disease, and there were no treatment options available. His oncologist offered a menu of possible treatments including radionuclide embolization of two liver lesions and radiation treatment of lung lesions. As Jim’s discomfort was primarily in the region of his largest liver lesion, he and his wife decided to pursue the liver embolization for pain relief, but while recovering from his chemotherapy, Jim lost more weight and became weaker.

At the time of the scheduled procedure, the interventional radiologist discussed his concern that Jim’s

change in status would make the procedure highly risky and could result in hospitalization and death. He

allowed that if Jim wanted to swing for the fences, they could proceed but he did not recommend it. More than anything, Jim wanted to be in control of his faculties, and the risks were too great. He and his family decided to return home and enroll in hospice care.

Jim was an English major in college, writing his senior thesis on the poet Wordsworth and taught high school English for 17 years. Throughout his career, he wrote poetry and was especially fond of the haiku. Haiku is a centuries old Japanese poetry format composed of 17 syllables in three unrhymed lines with the first line of five syllables, seven in the second, and five in the third. The subject is often an observation (usually of nature) or an event that is tied to or elicits an emotion. Over the years, a haiku would come to Jim, often unbidden, stimulated by a perception or an event.

While in Big Bend, we discussed adding a haiku to whatever memorial he considered. Once the decision was made to enroll in hospice care, Jim chose, from his life experiences, 17 haikus to post on social media, one daily beginning August 1. A few are included here:

Day 1: The Waterhole

Like the circumspect

Gazelle, I have waited long

before drinking deep.

Day 2: At Field’s Pond

At Field’s Pond today

a rude clique of frogs gave me

the silent treatment.

Day 7: Mt. Sugarloaf

On Mount Sugarloaf, we

met a youthful choir of pines

dressed in white robes.

By day 9, Jim was too weak to post his work. Jim’s wife continued his mission and reported the responses to him each day.

Day 11: Ripples

From shore a teacher

casts a stone. Endless ripples

roll and roll away.

Day 13: The Chase

Like a leaf that runs

from an October wind, the

cat escapes my son.

Jim died on the morning of day 16, shortly after this haiku was posted.

New Year’s Eve

Tonight, New Year’s Eve,

is so still and cold, the trees

crack like popping corks.

At the end of life, it may not be clear who is providing the narrative for care. It may be the physician offering treatment choices, another line of therapy, a new drug, a different modality of therapy, palliative care, or hospice care. The patient may never gain control of the narrative. Aggressive treatment may lead to hospitalization and a lonely death in the Intensive Care Unit.

Jim was empowered to take control of the narrative by opting for hospice care and posting his haikus. He no longer posted details to his social network about his doctor visits, daily physical challenges, and symptoms; it was about sharing his life and the wonder he found in it. The changes in responses on his social network were profound as it became less about expressing empathy and more about remembering the person he was. Just as Jim’s visit to Big Bend and the surrounding wildness and beauty of the park energized him, Jim’s satisfaction with the responses made him more comfortable, looking forward to each day’s reaction and, perhaps, making it easier for him to go.

A patient’s journey with cancer is a story told by family and friends. The satisfaction with the story depends on how the story ends. The physician’s role in the story begins when the cancer is evaluated and a treatment strategy proposed and provided. At a point in the care of everyone with incurable disease, the cancer is no longer the main issue and the patient and family take center stage. When the physician is unable to cure or prolong life, his or her role becomes that of a guide attempting to lead the patient and family to an ending that comforts all. This requires an understanding of the patient’s narrative and depends on accurate information about how the narrative will be affected by treatment choices.

The combination of hospice care with the assurance of dying at home surrounded by family coupled with the ability to connect with his extended family and friends through social media was truly transformative for Jim and for me. Jim’s control over the narrative and the direction that action gave to the care team made it easier to allow his death. Our role was to comfort and support and be present. There was no regret and no guilt with how things went. I could not have hoped for more.

A few months after Jim’s death, his family and friends gathered to celebrate his life. We met in a grove of trees in a protected forested area where he often hiked. The centerpiece of the gathering was a bench marked by a plaque with his name on it. There was also a plaque with his favorite haiku.

Dawn on the Appalachian Trail

Light slips in along

the eastern edge. I am still,

startled by beauty.

Jim’s ashes were scatted nearby.

Always the teacher, the ripples roll and roll ….

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford.

With me today is Dr. John Russell Hoverman, now retired, formerly responsible for the development of value-based delivery programs for Texas Oncology and US oncology. Dr. Hoverman also has a PhD in philosophy. We'll be discussing his Art of Oncology article, 'A Life and a Death in Haiku'.

At the time of this recording, our guest has no disclosures.

Russ, welcome to our podcast.

Dr. John Russell Hoverman: Thanks for asking me.

Dr. Lidia Schapira: So let me start by asking a personal question. How did philosophy lead you to medicine and cancer care?

Dr. John Russell Hoverman: I always thought I wanted to be a doctor. I had a family practitioner who was an inspiration. I think from sophomore in high school, I knew I wanted to be a doctor. But I always asked other questions. So when I got to college, I had a chance to broaden my horizons, I guess. And when it came time to choose a major, because I took some elective courses as a freshman that were required, when it became time to choose a major, I chose philosophy. My family doctor said, 'You know, that's great. You should have some other discipline. Some of the humanities is probably as good as anything. And it won't hurt you if you're going to be a physician.' So I majored in philosophy and minored in biology.

Dr. Lidia Schapira: It's interesting. I had a different experience. I, too, wanted to study philosophy, and the advice I received was, well, study medicine first and philosophize later. So I'm so glad that you actually studied philosophy formally. And tell us a little bit about how you have incorporated some of the thought processes and frameworks for approaching important topics that you learned as a philosopher into your medical practice and all of the amazing work that you've done.

Dr. John Russell Hoverman: Medicine is a humanistic enterprise. So you are interested in people or you're interested in what they think. But it's also an evidence-based enterprise. And philosophy is all about evidence, especially logic. That's been one of my favorite topics. I've written about that more than once about clinical trials. And actually, that may be a paper I'll do shortly is about the logic behind the mRNA vaccines. The science is spectacular, but it wouldn't be anything without the logic of clinical trials so that when we look at providing value, which should be an ethical obligation for physicians, logic comes in handy to determine whether a structure of a clinical trial actually gets you the answer that you want. And what you want is to know what is the highest value for your patients and to be able to measure that and be able to talk about it.

And then the other part of that is end of life care, which, again, is an ethical enterprise. And it has to do with getting information and giving the right information to your patients in what you're obligated to give. As you search for that, there's more and more information that probably is needed. So that's enough. And I still love the science. The science is wonderful, but it has to be translated.

Dr. Lidia Schapira: So help me think through how we incorporate storytelling and narrative into your argument that this too has value as we think about our roles as physicians, especially when we're thinking about end of life care.

Dr. John Russell Hoverman: I think you've had the same experience, I think, that we all in our practices have stories. My brother's story is just one of them. And you think about how your view towards having conversations with patients is colored by the patients that you've had and the stories that they told. I had a patient who had lung cancer in the rural area in Oregon and wanted to send them to the medical center. They said, 'No, I lived on a farm all my life. I know exactly what life and death is, and I want to be with my family.' So we've been impressed by the interactions patients have with their families and with their physicians as to how things could end up well.

Dr. Lidia Schapira: In your essay, you used an expression that I found very powerful. And that is that your brother Jim, whose story you tell, ultimately had control of his narrative. Tell us a little bit about how that locus of control is negotiated in the relationship between the patient and the cancer clinicians.

Dr. John Russell Hoverman: Again, there are other stories to tell. So we've had patients who wanted to be in control but didn't know how to do it and actually weren't sure what they wanted. One elderly woman talked to her family practitioner, her family physician about assisted suicide. So she was dying, I think of metastatic colon cancer. She had two daughters, and one was halfway around the world, and she didn't want to bother that daughter. So she wanted to slip off quietly. And when we've talked to her about it, we knew that her daughter would be honored to be there. And in fact, that was the case. So we learn from stories to maybe probe a little bit more than we ordinarily would. If something doesn't seem to be going right, maybe there's something we can address. I think we all have instances when that's happened.

Dr. Lidia Schapira: In your essay, you also talk about the importance of storytelling and the control of narrative as a way of helping those who love the person who's dying and how that can ease the pain of bereavement. And in your particular case, when you tell Jim's story, you say there was no regret, no guilt, which is a beautiful sentiment. As physicians, we often see that there is regret and there is guilt with how families approach the last few weeks of life of a loved one. Can you tell us a little bit more about this, no regret, no guilt concept?

Dr. John Russell Hoverman: We see guilt often when things don't turn out the way families think they should. And probably the thing that we see most often is the patient dies in the hospital, and they're not at home. And what we do see with hospice care is that they don't feel as much guilt. And I think what happened with Jim, maybe taking that to another level, by being proactive about the message. And the question is, not everybody can write haikus. But what else can you do? Can you have somebody give a piece of a story? Or can you publish a photograph? Or what else can you do to mark that life as something that was worthwhile, and then everybody gets on board with that. That becomes more important than pain control or being awake again. I think we're just exploring that. For me, it was a revelation to see that.

Dr. Lidia Schapira: Now, let's turn to your essay. In the final moments of this interview, you bring life's experience as a cancer clinician, as a deep thinker. And you chose to tell the story to your colleagues through publication and JCO. What is the message in your essay for listeners and readers.

Dr. John Russell Hoverman: The message, I think, is the message that I got. To my mind, the story wrote itself. It was there just to record. Then the message to me was that this is how things could be, understanding the patient's, and I'll use that word 'mindset', so that we can tailor his care to that mindset, and in fact allow him to have as much say about how that care is tailored as possible.

Dr. Lidia Schapira: Tell us a little bit about Jim, your brother.

Dr. John Russell Hoverman: Well, he's a middle child. So we had three boys. And of course, you always think that the older one always beats up on the younger ones. Jim started to wrestle when he was in junior high school. That changed our relationship. So it was no longer a power relationship. But when he went to college, he majored in English, and I majored in philosophy. And we both were interested in the same things. Interested in how the world works, how the world got to be where it was, but Jim interrogated nature with poetry and literature, and I interrogated nature with science and philosophy.

And we've had some interesting discussions, but we were not far off from the ultimate picture. But I would talk about something about ethics, and he would have a literature reference and probably would sum up what I would do in five pages in four sentences. So it continued to be that way. We were both always interested in the outside, interested in hiking. As you can tell, I'm interested in taking photographs. So there's always a sense of being in the world that we both had. And Jim did it in his way, and I did my way. But we were never really that different, I think, in how we looked at things.

Dr. Lidia Schapira: If I may, I'd like to ask a personal question. And, of course, you don't have to answer, and that is, how are you doing in your grief over Jim's loss?

Dr. John Russell Hoverman: Well, it was good that it ended the way it was. It was bracing to watch your brother die. I'm not sure that's the best word. But it was clearly emotional. But it helps if it happened the best way it could. And he was in control. It’s not something that got away from us. And again, we've talked about sudden deaths and how those are so unsatisfying because you can never really say anything. And it wasn't that, which I know was good for him and his family. So it's not just me; his sons and his wife also appreciated the chance to have Jim towards the end of his life.

Dr. Lidia Schapira: Well, the essay is really moving. It's instructive. It's personal. And on behalf of the readers of JCO, I thank you for sending it to us. It's been a real pleasure chatting with you today, Russ, and I want to express on behalf of all of us, our condolences for your loss, and our admiration for your work. Thank you.

Dr. John Russell Hoverman: Thanks, and I appreciate working with you. I think it's much better than it might have been otherwise.

Dr. Lidia Schapira: Before we conclude this interview, Russ, I wonder if you can read one of your favorite haikus for us.

Dr. John Russell Hoverman: Sure. It's called 'The Hospital Bed', and it relates to a story that Jim's wife told me and I imagined:

Restless and moaning

His wife lies down beside him

He quiets and sleeps

That’s it.

Dr. Lidia Schapira: Thank you so much. So until next time, thank you for listening to JCO’s Cancer Stories: Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO’s Cancer Stories: The Art of Oncology, is just one of ASCO’s many podcasts. You can find all of the shows at podcast.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Listen to ASCO’s Journal of Clinical Oncology essay, ““Why Me?”, a Question of Opportunity,” by Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre. The essay is followed by an interview with Wein and host Dr. Lidia Schapira. Wein considers if patients are able to make rational decisions about their health when they are able to accept the reality of illness.

TRANSCRIPT 

Narrator: “Why Me?”, a Question of Opportunity, by Simon Wein, MD 

“Why me?”

A question is an opportunity. It is also an invitation and a revelation.

A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication, or talking. Some questions appear mechanical, such as “Will I be able to drive again?” while others are more obviously self reflective, such as “Why did I get sick?” However, even the most mechanically minded question may be fraught with emotional significance.

A recent Art of Oncology poem entitled “Questions for the Oncologist” listed a litany of questions the doctor encouraged his patient to ask. All, except one: “But please, don’t ask me that one thing./Don’t ask, ‘why me?’/You wouldn’t like the answer. I don’t.” Later, the doctor-poet provided the answer: “Bad luck is a second-rate explanation, I know.” The poem was sensitively, empathically, and thoughtfully written, apparently recalling an emotionally intense case. The poem reminded me of a patient I looked after some time ago and of a mentor past.

An obese 60-year-old man came in. He was miserable and in pain. Ten months after definitive surgery and radiotherapy for lung cancer, the disease had returned with pain in his right chest wall. While awaiting full biopsy results, we irradiated the lesion and started nonsteroidal analgesics and duloxetine for the neuropathic pain (with the hope it might also improve his mood). Within 3 weeks, the pain had been significantly relieved although his misery was unchanged. We talked. He had been divorced for many years, worked in hi-tech, lived alone, and had lost contact with his two adult children. His parents had migrated in middle age, and he was an only child born in a new country. His parents struggled, and the family dynamic could be described as sullen. The family did little together and was silent a lot of the time. He recalls his parents, especially his father, as emotionally distant, involved in their own lives. Growing up he spent a lot of time alone. At university, he studied engineering and married his first girlfriend; however, the marriage fell apart as, in his words, “I did not know how to live together with someone else.” In his sullen home life, he had not acquired the skills of building a family nor had he developed a coherent world view.

Despite good pain relief, his sense of brooding and demoralized loneliness persisted. Underneath was a seething anger. He kept asking “why me?” I assumed at first that he was referring to the cancer. He was, but not only. I consulted with a mentor, and he said he often answered that question with: “Why not you?” I tried it.

The patient was flummoxed. It pushed him to reflect. With further probing, over time, his thinking changed from a closed loop of “Why me,” to “What is life asking of me?” And further afield he reflected on his childhood, his failed marriage, and estrangement from his children.

Why did this happen to me? He shook off some of his depressed mood as he began to piece together his life’s trajectory. In an insightful moment of acceptance he noted: “Indeed, why not me … What makes me special that I should not have the disease?” Sadly, there was no fairy-tale ending. He died alone.

When a patient asks a difficult question such as “Why me?” or “How long have I got doc?” the psychologically astute analysis is, “Why and what does the patient want to know?” and “Why now?”

Responding with the question “Why not you?” may sound harsh, even confrontational. “Why not you?” is designed to be challenging to shift the locus and focus of thinking from a passive and often ineffectual cry, “Why me?” Nevertheless might such a response appear insensitive and lacking empathy?

Over the years, I have learnt that practically any question can be asked of a patient so long as it is asked for the sake of the patient, in an appropriate manner and in the right circumstance. In short, the questions must be empathic. Wiseman suggested the empathic response has four characteristics: to see the world as others see it, to be nonjudgmental, to understand another person’s feelings, and to communicate your understanding of that person’s feelings.

Avoiding difficult and embarrassing questions may provide short-term relief but possibly sets the stage for later unresolved angst. I recently did a sabbatical in palliative care in Australia, a fair distance from the Middle East both physically and culturally. The openness and tempo of

questions asked of patients and family in Australia might be considered brusque (or confrontational) and hope depriving in the Middle East. Although the influence of culture is pervasive, it is the individual who needs our help and who ultimately determines the conversation. Sometimes the individual is not open to talking therapy. It is an important communication skill to know when not to probe.

“Why me” is both a deeply philosophical and a naive question. “Why me” addresses the question of justice and seeks an explanation on the assumption that ours is a rational world. However if a person thinks the world is inherently random, then such a question is naive and without intellectual value since everything is bad luck, like a random genetic mutation.

“Why me” can be a profound philosophical question as the doctor-poet implied when he concluded: “Search for a better answer within, as I have. Unsuccessfully, so far.”1 The “answer within” bypasses the issue of whether it is a meaningless world or a god-driven world. The “answer within” locates the responsibility within ourselves to try to make sense of what is happening with my life. An answer within suggests a philosophy that we can make sense and meaning of my life, despite the world’s apparent carelessness or bad luck.

Alternatively many people, especially here in the Middle East, hold a theological belief, and the question “Why me?” is resolved within the theology of their religious beliefs. The believers are, in a way, lucky.

Patients who ask the existential question “Why me?” can be challenged to reflect on themselves. “Why not you?” is a probing question that, with skill and some luck, may enable a measure of acceptance: “Indeed, why not me” (Fig 1).

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. In this episode, we will be discussing his Art of Oncology article, "Why Me? A Question of Opportunity." 

At the time of this recording, our guest has no disclosures. 

Simon, welcome to our podcast and thank you for joining us.

Dr. Simon Wein: Thank you very much, Lidia. It's a pleasure to be speaking with you.

Dr. Lidia Schapira: It is our pleasure as well. I'd like to start this conversation by asking our contributing authors to tell us what they're currently reading or if they have a book they've just read they want to recommend to colleagues and listeners.

Dr. Simon Wein: So I recently picked up and reread The Count of Monte Cristo by Alexandre Dumas. I don't know if you've read it. It's a very long production because in those days they used to have a weekly chapter, weekly several chapters, and they didn't have WhatsApp and television and cinemas. And it's very long, but it's a wonderful read. I enjoyed it very much. The other book I'm reading now, more slowly, is The Nature of Natural History by Marston Bates. He is an American zoologist, and it's a wonderful read about his overall view of life, animals and plants, and I'm enjoying it very much. I have a great interest in gardening, and I think his views are very interesting.

Dr. Lidia Schapira: That's wonderful. So let's turn now to your essay, "Why Me?" This essay starts as a conversation with an author who has published a prior work, a prose poem of sorts, in Art of Oncology. Tell us what it was about that read that sort of triggered you to want to respond and then clearly elaborate into what's turned into a beautiful manuscript.

Dr. Simon Wein: I think what really grabbed me was the sensitivity of the oncologist as he was writing it, and the pain, it's a little bit strong, that word, but the difficulty he had in dealing with this fear that the patient would ask him, "Why me?" He wrote it so beautifully with such empathic sensitivity, that it really grabbed me, that question, "Why me?" that he was scared of. And it recalled for me, my mentor from many, many years ago, Dr. Wally Moon. And I remember as clear as yesterday, he'd say, "Patient asked me the question, 'Why me?' I'd ask him back, 'Why not me?'" So that's what it triggered off for me reading that essay, those two things.

Dr. Lidia Schapira: Simon, you also make an interesting point that I want the listeners also to think about, and that is that a cultural context influences whether or not we feel comfortable even asking these questions, right? And you contrast your experience in a recent setting in Australia with your typical practice in Israel and the Middle East. Can you talk a little bit about that?

Dr. Simon Wein: The older I get in this profession, the more I'm impressed by the importance of culture and yet how much we have to honor the individual and that ongoing tension between those two points of the compass. And I was brought up in Australia and sort of rather Anglo-Saxon and reserved in that way, and in Australia much less likely, in a sense, to be forthcoming and outgoing in what we want to say. And in Israel, people are much more open. And yet when we come to the consulting room in Israel as in other parts of the Middle East, indeed in Eastern Europe, a lot of the literature has demonstrated that we don't want to tell the truth straight out directly. 

And in Australia, on the other hand, even though it's a reserved society, people are straight out in the consulting room. Bang. They'll say, "This is the prognosis and this is what it is." So I've developed this model for my own thinking, is that in the West, the individual is the final moral arbiter of deciding ethical behavior, whereas in the Middle East it's more the family or, in a broader context, the culture. And so in Israel, you're much more likely to speak with the family, involve the family, or they'll come in and ask you not to say this to Grandma, and you have to make up your mind where the individual stands and where the cultural family influences. But from my point of view, I still think that the individual has to be honored and respected ultimately in the final decision.

Dr. Lidia Schapira: Simon, I want to also ask a little bit about your style and your communication style with patients. You are so clear in your descriptions to address not only physical pain but emotional pain and suffering and misery, as you call it. How do you sit with a patient and try to draw them out in a way that is empathetic and respectful, but also to help them understand that you actually care?

Dr. Simon Wein: I'll take you back to another mentor I had. That was Bill Breitbart at Memorial. I did a two-year fellowship in psychiatry psych-oncology there many years ago. As I said, I came from Australia. I was rather green in psychological terms, and I used to do rounds with Bill. And I remember this one patient I had with Bill, and it was a middle-aged man. He was a working blue-collar man. And Bill went up to him, we were asked to see him for depression, and Bill went up to him and started talking with him, and within 30 seconds he'd started asking about the tattoos on his arms. And I thought, wow, that's fairly personal to get into that. You only just met the bloke and you're already talking about that. 

And of course, from that I learned and with other experiences, that you can ask any patient any question so long as three conditions are fulfilled, and this is what I teach to the residents. The first condition is that it has to be at the right time. Sometimes you have to ask the patient privately and you ask the patient, the family, then to leave. It has to be the right you can't ask questions like this in the corridor, so the timing has to be right. The second thing, and this is I learned a lot from Bill and from my previous mentor, Wally Moon, you have to ask it in the right way. You have to ask with the right intonation. You could have said to that guy with the tattoos, "Wow, look at those tats. I mean, where did you get them from?" You know, that might have then made him shirk a little bit and stand back. Or you could have said, "Hello, Mr. Jones, goodness gracious, look at those tattoos you've got. They look very interesting. Do you mind telling me about them?" And so the way you ask. But I think the third condition for asking any question to any patient is that it has to be for the sake of the patient. It's not for me, it's not for anybody else. It has to be that in some way, this question will benefit the patient. The patient will respect that, they'll see that. 

And so I remember once I wanted to go and take a photograph of this guy who had these enormous hemangioma tumors on his leg. And I went in and I felt uncomfortable. And I realized the reason I felt uncomfortable was I was taking these photographs for myself, not for his sake. Eventually, I spoke to him and he agreed. He was agreeable for education and so forth. But I think those three conditions, the right time, asking it in the right way, in an empathic way, that's a key word, empathic or sensitive or charming or pleasant way. And for the third condition, for the sake of the patient, and I think that's really, really critical in being able to ask a patient any question.

Dr. Lidia Schapira: That is such a thoughtful, beautiful answer. And I'm going to switch to another topic just because I want to pick your brain and I'm curious to know how you would handle this. And that is, I know you do palliative care and you've clearly trained in the psychological aspect of serious illness, but do you think, wearing your palliative care hat, that cancer is special and that cancer patients are a special population when they ask, "Why me?"

Dr. Simon Wein: That’s a really good question, isn’t it? In our hospital now, I started off in palliative care about 15 years ago. For the first 10 years, we only did cancer patients. I’m an oncologist by training. But now we’re opening up to non-cancer patients. I think that in society there’s little doubt that the myth of cancer being the same as a death sentence is very strong. There are many patients with advanced New York Heart Association IV heart failure whose prognosis that is much worse than many of our cancer patients. But cancer has gotten this flavor of death, of Damocles’ Sword hanging over your head and that’s that, and it raises- immediately goes to all the existential questions of meaninglessness and emptiness and death and fear and loneliness and all that, much more than these other ones. And it’s not true. Cancer patients today may live much much longer than we once knew and much longer than many other non-cancer patients. So I think there is something very special about that. 

And cancer has got this other horrific aspect about it which is that the body is eating itself up. Your own cells have turned against you. And I think psychologically, emotionally– Well, auto-immune diseases are not dissimilar in the sense of the body turning against itself. But cancer, it’s a sense of the cells dividing and coming on and eating you up. It’s got that mythical aspect to it. 

Dr. Lidia Schapira: And if I may add one more thing, in my mind, it’s also that cancer treatment is so grueling and awful and sometimes actually exacerbates the suffering. So I think that it’s cancer and the fear of consequences and exposure to cancer treatments, would you agree?

Dr. Simon Wein: A lot of our patients come to us, but they won’t say to the oncologist how tough the treatment has been. They don’t want to sort of feel weak in front of the oncologist they don’t want to give up on that chance of getting out of the cancer. Because if they say that to the oncologist, the oncologist might say, “Oh, you don’t want to miss this chance, but you’re not good. But maybe we take a break from the cancer treatment.” But many of them are absolutely exhausted. Absolutely exhausted. 

And then the other aspect of that, not just the fear of the oncologist, but also with the family. The family are egging them on, and I often say to the family, “Listen, guys. Mom is very, very tired. You haven’t got the treatment. You’re young, you’re well, you don’t feel sick, you want to fight.” The patient doesn't want to disappoint the family. The family don’t want to disappoint mom. Nobody talks to each other and they have this dance of the macabre where nobody’s talking to each other and the patient just keeps getting this treatment. I mean that’s one of the things why I think it’s worth confronting patients with the question, “Why not you?” If only to have some sense of acceptance of what it is.

Now often in palliative care oncology, when you say acceptance, it means “Right, I accept I am going to die.” But I don’t see it like that. I think if you have a measure of acceptance, then it will enable you to make more rational decisions about your cancer care. I mean how rational can you be in deciding about the cancer? We don’t know. The oncologist gives you 30%. Well, how can you interpret 30%? I don’t know. So the rationality is limited. But if you’re understanding of what’s going on, I think it helps you make more rational- to have treatment and continue or not. So I think that’s why it’s a useful thing to try and do that. But some patients don't want to, and I just don’t push it. And many is the time that I’ve said to a patient, “You know, this is very bad. You’ve got cancer.” It’s like they come back next week, “How’s my virus going?” It’s like ‘It’ll just pass and that’s it,” and so you realize that and you just continue on. 

Dr. Lidia Schapira: And so my last question to you, Simon, is this: as an oncologist, as a palliative care physician, as an expert in communication and psycho-oncology, what do you say to your oncology colleagues who have trouble responding to the question that patients frequently ask, ‘Why me?’

Dr. Simon Wein: Lidia, it's a good question because not often do I get a chance to speak to oncologists in this way. We're often kept out of the room, and when the decisions are made, it's very difficult to backtrack a decision about treatment. Very difficult. One, because you can destroy any trust that the patient will have built up in the system, and two, it's not really collegial then afterward to go and undermine. And so that's why I write lots of articles on these subjects, Lidia, and I hope that the oncologists will read them and I hope that they get published. I distribute them at work and sometimes the young ones will come and say, “You know, that's quite good.” What we're trying to do, what I think is very, very important, is to have the multidisciplinary meeting. We're trying to develop that now. 

When I was in Australia, Peter Mac, we used to have them. And I think it's by a process of diffusion, by repeating the messages, the philosophy, the idea that we should ask the patient, get a picture from the patient of what's going on. Do they really want it? What's going on? What's important to them in life? Maybe they're satisfied with their lives. And then to have the balance between the side effects and the challenge of the treatment. The other thing that really gets me, got me on a bit of a hobby horse now, Lidia, is how much time in the last three months of their life patients spend on the road, coming to the hospital, doing blood tests, going home, another PET CT, another scan, and those are the last percentage of their life. It's substantial. So more and more we're actually doing telemedicine, as I'm sure you are. And at first, I was a bit skeptical about that, being an old-fashioned physician, where I think you should talk, touch them, see them, but you actually save a lot of their time and a lot of their difficulty and so forth. I think that's very good.

Dr. Lidia Schapira: Yeah, both for us and for our patients, time is the greatest gift, right? And if we begin to think about it in those terms, time saved, time freed from hanging on to a test result, or needing to go and get another scan, can be an enormous gift for them as well.

Dr. Simon Wein: Or an opportunity to live and enjoy life. And I say to every patient that every day you've got to find something to make yourself happy. I had this one patient the other day, the oncologist was mad. This poor guy's got a metastatic disease, his liver is not as good as it might be, and he was desperate to have a smoke of a cigar and a whiskey. And the oncologist said, “No, you can't do that because it could interact with your chemotherapy.” And so I broke my rule and I said, “Look, the oncologist doesn't really know what he's talking about,” and the guy promised to bring me in a cigar, which I haven't yet got. But anyway, I thought that was very sweet of him. 

Now I just like to say one more thing. If we're talking about therapeutic relationships, I think that the best lesson I ever learned and heard was from Irvin Yalom, from his book Existential Psychotherapy. And it's like 40 years since he wrote it, and a lot of paper has been printed, articles have been printed since then. But he really was very good. He said we have to relate to the patient like ourselves. We've got the same existential problems that the patient has, you know, empathy and all that, but we've got the same problems. Theirs are a little bit more contracted in time. And what I like to do with my patients is relate to them in an authentic, real way, a genuine way, and they'll learn from that relationship how to live their lives when they go home. And I thought that was a really, really beautiful thing. And so he's got a quote there, which I love to share. And it's that “The relationship with the patient is that which heals.” It's the relationship that heals. And I think we shouldn't underestimate, and I think we do sometimes, the importance of the interaction and the relationship between the patient and the doctor.

Dr. Lidia Schapira: It's a lovely way to end our conversation. Dr. Yalom is a colleague here at Stanford. He's in his 90s now, and he recently widowed. So that's a lovely thought and a wonderful teacher and mentor.

So thank you, and until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes: 

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

Dr. Simon Wein is head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel.

Additional Reading and Podcast

Questions for the Oncologist, by Barry Meisenberg

Podcast Interview with Drs Meisenberg and Schapira on Questions for the Oncologist.

Listen to ASCO’s Journal of Clinical Oncology essay, “Knuckleheads” by Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. The essay is followed by an interview with Gilligan and host Dr. Lidia Schapira. Gilligan emphasizes the importance of partnering with his patients to understand what they are going through and their reason for rejecting recommended treatment.

TRANSCRIPT

Narrator: Knuckleheads by Tmothy D. Gilligan, MD, FASCO (10.1200/JCO.24.00160)

I was in tumor board when I first heard about him. One of my former colleagues referred to patients like this as knuckleheads, patients who were interfering with our plan to treat their cancer. He needed chemotherapy. He kept refusing. He was going to be referred to me so that I could talk some sense into him.

Preparing to go into the examination room, I realized I was getting ready to use my medical knowledge to try to make him consent to chemotherapy. After all, that is what he needed. If only he would listen to me. I paused and remembered what my mentors had taught me about forming effective relationships with patients and about the communication skills that could engender trust and a feeling of connection. I remembered one of them saying to me “Every time I open my mouth, I risk making things worse.” So I committed to listening and curiosity and humility and entered the room. He had a curable cancer. There was so much at stake.

“What have the other doctors been telling you about what’s going on?” I asked. He said he had been told that his cancer had come back and that he needed chemotherapy now. That additional surgery wasn’t an option.

“I heard that you had some concerns about chemotherapy,” I said.

“Yes, I want to delay it until the fall,” he said.

“Tell me about that,” I responded.

So I got to hear his story. He was a single father with several school-aged children. His wife had recently left him for another man and said a lot of hurtful things on the way out the door. She no longer wanted to be a mother and only saw the kids 1 or 2 days a month. His oldest child was in crisis and struggling in school. The patient was a construction worker who could only work during the warmer months and would be unemployed all winter. As a seasonal worker, he was not eligible for unemployment benefits. He was the sole breadwinner for his family. It was now summer. If he stopped working for 3 months to receive chemotherapy, he would not be able to support his family and had no way to make it up during the winter.

Not really the story of a knucklehead, of another man refusing to take care of himself. It all seemed so unfair to me that I wanted to cry, to have all this land on him at once—cancer, abandonment, a child in crisis, financial instability. He was overwhelmed. I let him know that I saw that, that I was moved by it.

We talked about his cancer and what we would expect to happen if it was treated and what would happen if it was not. He wondered if maybe we could wait 2 weeks and get another scan to see how quickly things were progressing. Medically this seemed safe, and I agreed to his plan. And with the help of the social worker on our team, we started marshalling resources that day to make it more feasible to get him through treatment, which he agreed to begin a few weeks later. He completed the course of chemotherapy, and he has most likely been cured.

He reminded me of another patient I had, an African American woman who had been referred to me by one of my only African American colleagues in my work setting. She had bladder cancer. When reviewing her chart, I noticed that she had been diagnosed 2 years earlier at a different hospital and refused treatment. The chart said that she needed to take care of her children and declined curative surgery for that reason. It seemed like an odd logic to me. Another knucklehead refusing to comply with our plan?

When I went into the room, she clearly did not trust me. I saw skepticism in every aspect of her behavior and wondered whether it was my whiteness that triggered it. I remembered my mentor's words about the risk of opening my mouth when I was not yet sure to whom I was speaking. So I listened, paying attention and waiting for an opening. Eventually she said, “You know, I was actually diagnosed 2 years ago.”

“Yes, I saw that in your chart. I was wondering what happened.”

“Well, I was all set for surgery. And when they were evaluating me for it, this anesthesiologist came into the room. And she stood there looking at me like I was a piece of dirt. And she wouldn’t answer my questions. And I said to myself, I’m not letting her take care of me.”

“Was that racism?” I asked her.

“Yes, it was,” she said.

“It sounds like racism,” I said.

“I know it when I see it,” she said.

After that, there was a striking shift away from the skepticism I had felt from her earlier in the visit. We talked through her treatment options. We set her up to see a radiation oncologist and a urologist who did radical cystectomies. When I called her at home after those visits to see how they went, I heard that the radiation oncologist had won her trust. The urologist had not. “It felt like he couldn't wait to wheel me off to the operating room,” she told me. So she choose bladder preservation with chemotherapy and radiation.

It turned out that she was a foster mother and was deeply devoted to her foster children. She wanted to be there for them. They were not a reason to decline life-saving medical care. And we talked about them at every visit as she made her way through treatment. She, too, seems to have been cured, despite the delay.

What surprised me about these two patients is that no one seems to have heard their stories during their initial encounters with the health care system. The only story that was heard was the story of the tumor, the focus of our tumor boards. And yet it only became possible to treat them when we learned their human story. I wonder whether tumor board is the best name for the conferences that bear that moniker. Does the name predispose us to focus on the disease rather than the person? And while I did get to hear the stories of these two patients, it made me wonder how often I have failed to do so with others on days when I was not being so careful.

What was it that led them to choose treatment? Human decision making is complex and influenced by many factors. I tried to see these two patients and to hear them and to make a connection. I cannot know for sure what made the difference.

This is what I do know: I am not entitled to my patients' trust. It is something I have to earn each time I walk into the room. One way to earn it is to listen and to be responsive to what I hear. I try to remember where the locus of control lies. It is their life, it is their illness, and it is their decision. I can advise them and help them understand their options. Together, we can explore what is most important to them. But I do not get to tell them what to do. If they decline to follow sound medical advice, maybe there is something important that I do not know. If I stop talking, maybe they will tell me.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Timothy Gilligan, who is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. In this episode, we'll be discussing his Art of Oncology article, "Knuckleheads." 

At the time of this recording, our guest has no disclosures. 

Tim, welcome to our podcast, and thank you for joining us.

Dr. Timothy Gilligan: Thank you so much for having me. I'm really happy to be here.

Dr. Lidia Schapira: It's my pleasure. Let's start by talking a little bit about the purpose of writing and publishing this article that, to me as a reader, has a direct message for our colleagues in oncology. Tell us a little bit about the motivation and the intention.

Dr. Timothy Gilligan: So I think there are two pieces to it. One actually was feedback that I heard from medical students, and we would talk to them about their experiences in the hospital with regard to bias and related issues. One of my hats that I wear is I'm a DEI officer for graduate medical education, so I'm involved in that work. We heard two major complaints from students, and one of them was that they heard doctors, whether they were attendings or residents or interns, speaking about patients disrespectfully. And the big kind of ‘aha moment’ for me was realizing that we kind of get indoctrinated into this world where we sometimes let off steam by speaking about our patients in disrespectful ways. And I remembered when I was a junior attending, a senior attending, handing off a patient to me, saying, "Good luck with her. She's crazy." And I was so used to that language that I didn't pay that much attention to it, but I actually ended up forming a very good relationship with that patient. 

But after I heard that feedback from the medical students about how it really upset them that we're taking care of these people, and sometimes outside the room, we use language that isn't really respectful. It's not that it was mean, necessarily, but it was less respectful than you'd like it to be if it was someone like your mom or your loved one, your brother, or whatever. And so I started really listening to that, and I tried to pay attention. Did I do that? And could I stop doing it if I did? So that was one piece of this. But the other thing that really motivated me is that the first story that I tell in this article really was my favorite patient of 2023, because I actually felt like, by taking an extra effort to really get to know the person, I was actually able to really get a better outcome for the patient. And when we got him through treatment and he was cured, it felt like such a win.

Dr. Lidia Schapira: Let's pause for a moment and just talk a little bit about the student's comment, because when I just saw the title of the article, I felt a little stung, like, how can we even be using this word to refer to a patient? Tell us a little bit about that. You are the most attentive, respectful clinician that I know, and you publish an article with a word that a colleague described the patient, and to me, it just doesn't pass the bar.

Dr. Timothy Gilligan: Yeah, well, it's funny, because, actually, the person I heard use this language is one of my favorite doctors and is really an amazing doctor. And so good people can use language like that, and I think we need to stop. But I almost used it affectionately because I learned a lot from this doctor. And as the doctor actually had very, very high clinical standards, and I admired that about them. But I'm an expert in testicular cancer. And sort of the word on the street among doctors who test testicular cancers is that the challenge is you have these men in their 20s who don't take their health care seriously and they won't follow your advice. And so they get referred to as "knuckleheads," which is not a word we should be using. But that's where I came from. I didn't make that up. It's a word I had heard in my practice.

Dr. Lidia Schapira: Let's talk a little bit about why you were called in to see this patient. He refused therapy and you were called in to go and have the conversation that will make him accept therapy because refusal of therapy seems unreasonable. Help us understand a little bit about how somebody should think about a patient who refuses therapy. Broadly, it seems your advice is to go in and get the story, and the story will explain things many times, but tell us a little bit more about that.

Dr. Timothy Gilligan: Yeah. The patient was sent to me because I'm the local expert in testicular cancer. And the thought was that the oncologist could get the patient to go along with the treatment that was recommended. And I realized shortly before I went into the room, I was all geared up to marshal all the evidence and all the facts and to explain to him why he needed treatment no matter what. And I remember when I was in training a surgeon, once I was in the room with them, I was talking to a patient and the patient was talking about how complicated it was to get through the treatment. And the surgeon said to the patient, "Well, you know, right now the only thing that matters is your cancer." And I remember thinking, well, that actually may not be true because people have lives. They have to pay their bills, they have a job, they have a family, they have kids they're worried about. For us, it's easy to say ‘your cancer is the only thing you need to worry about,’ but often it's not. And so I think what helped me with the patient was to sort of pause before I went into the room and think, what's the story here? What don't I know yet that I need to know? And how can I find it out?

Dr. Lidia Schapira: And you tell the reader that you relied on advice you'd received from an attending years before, that also warned you that if you say too much, you could be making things worse. If you open your mouth, you could potentially contribute to whatever the tension was that had created this impasse to begin with. So you slowly sort of let the patient tell you the story and you're drawn in. Tell us a little bit about what it feels like to be drawn into this patient's story, somebody who had already been labeled as being perhaps difficult or refusing a life-saving therapy.

Dr. Timothy Gilligan: Well, honestly, I ended up being really surprised. And I think the issue you're talking about that what it reminds me of is when I was early in my career, I found it very confusing that I would have patients who really loved me and was glad I was their doctor, but then there'd be some patients who it felt like they didn't really love me and they wish they had someone else as a doctor. And I tried to figure out, like, I'm doing the same thing. Why am I getting such different reactions? Then, of course, the obvious explanation is I'm seeing all these different people who want different things. And I think going into the room with this sense of, before I say anything, I need to figure out who I'm talking to, because a given approach will work with one person but not with another. And if I can figure out who's who and tailor my approach to the individual, I can have much more success. And so it got me in the habit of trying to really start with listening and listening and watching. When I work with fellows, what I try to get them to do is just really observe carefully. So rather than put their energy into talking, put their energy into watching and listening and figuring out: “Who is this person? What kind of day are they having? What do they need from me? How can I be helpful to them? How can I speak to them in a way that they'll feel like I'm on their side and they can trust me and I respect them?” and all of that. And so the shorthand for me is to go into the room with curiosity and find out, who is this person? And I figured that out not by talking, but by listening to them. That's how I got him to tell me his stories. I just asked him, like, "I hear you don't want chemotherapy. Tell me what's going on." Then I heard this whole story.

Dr. Lidia Schapira: And his story is heartbreaking.

Dr. Timothy Gilligan: It is.

Dr. Lidia Schapira: He's been abandoned by his wife. He's got to support the kids. He's got to work in the summer. And it's not that he doesn't want to live. He just doesn't see a choice here. And you say in the article briefly that you were moved by the story, and tell us a little bit more about what happens to you when you're moved by a story.

Dr. Timothy Gilligan: I became a little bit emotional. I don't think I really cried, but I paused for a moment to kind of catch myself. I think particularly I brought a social worker into the room to help with what was going on and the nurse I work with closely. And I told them the story. I actually thought that ended up being effective. It wasn't really something I had planned, but I wanted to get them up to speed and I didn't want to make him tell the story again. And so I told his story to them and I thought what was effective about that was, first of all, it let him know I really heard it and I got it. And it wasn't the story of the medical facts, it was the whole story. But when I told it, I realized what a sad story it was and how unfair.

Dr. Lidia Schapira: So, Tim, let's talk a little bit about that. In the course of the work that we do, we are deeply moved and touched by the stories of the people that we treat, the people whose diagnoses we are experts in. But their lives are really their own and they share things that are incredibly intimate with us. So tell us a little bit about how you have, over the course of your career and as self-aware as you are, dealt with the emotional load.

Dr. Timothy Gilligan: The other thing I tell fellows is I think it's really important to have hobbies outside of medicine. I think you have to find a way to recharge your batteries. But if you don't care, if you try to protect yourself by not caring, then you're missing out on the meaning of the work. 

I have a short anecdote I can share that really had a big impact on me. When I was in my first years of attending, I was treating a man with testicular cancer. And we tried and tried and tried to cure him and kept thinking we were going to be able to, but his tumor ended up being really very resistant to treatment and eventually it was not curable. And he was in the ICU. I think he had an infection, this complication from treatment, but it really was game over at that point. It was appropriate, medically appropriate, to withdraw care. We were just going to torment him to keep him on life support longer. And I went to the meeting with his mother and his sister and this attending who had supervised me, who I admired greatly, one of the people who changed me when I was an intern and I was in the ICU, so he's the ICU attending. I'm there as the oncologist, I'm kind of running the family meeting and I tell them I don't think there's anything more we can do medically, and it's time to withdraw life support. And I started to cry, and I felt really embarrassed because here's this attending who I admired so much, and gosh, Tim Gilligan can't even keep it together in a family meeting. And I felt a little embarrassed. But I really cared about this patient. I'd known him for a year and a half, and the family agreed, and withdrew life support and he passed away. And I ran into his sister about six months later, nine months later in the grocery store while shopping, and we talked for a little bit, and she said that what made them feel okay about withdrawing life support was the fact that I cried.

Dr. Lidia Schapira: It's a beautiful story, and thank you for sharing that. We often talk about the therapy of connecting with a patient, but connecting means connecting at an emotional level. And it's sort of disingenuous to think that we can do that without feeling and personally being affected by that. 

When I was training, Tim, before we formally taught communication skills or integrated palliative care and talked about self-care, the advice I got from my attending was that you just go for a run as a way of recuperating. And I remember from a prior interview I did with you that you like to play tennis. Do you go for a run? Do you play tennis? And do you have any other advice for colleagues, especially junior colleagues who are just entering this field and realizing that connection means engagement. And engagement may mean loss and grief because we care.

Dr. Timothy Gilligan: So I do still play tennis. And what I love about tennis is that I can't think about anything else when I'm trying to hit a tennis ball. It's the best I can do. I can't meditate. But tennis is like meditation for me because I'm not obsessed with winning or losing. I do try to play good tennis. I like to hit a good ball, and that requires a lot of attention and a lot of focus, so it gets my head out of it. And then I also just think the stress relief. I mean, I can be aggressive on the tennis court in a way that's not socially acceptable to be aggressive elsewhere. I can hit that ball as hard as I can and not do any harm to anybody. So I think that stress release is really important. I think exercise, the benefits of running. I mean, there are so many benefits, psychologically and emotionally, to exercise and really being in your body. So I think some way of recharging your batteries.

And what I worry is that sometimes you get this model of keeping our distance, our professional boundaries, and not get in too deep, not caring too much. And I actually think, as I said before, that the meaning of this work is caring and connecting. And so then if you're going to be drained in some ways, you have to figure out how to fill yourself back up. The risk is that there's a sort of ethic in medicine where you give everything to your job. But you burn out if you do that. So it's the feeling that it's okay to go play tennis, it's okay to go for a run. It's okay to read poetry or meditate or cook or do whatever it is that refills your tank. I think it's so important in this work to prioritize that and make room for it. Let’s not take pride in being a workaholic and working all the time. What I have observed is that those people become less effective as physicians, at least in terms of the humanism of it.

Dr. Lidia Schapira: I couldn't agree with you more. 

I'm wondering if you can also tell us a little bit about how you think storytelling and narratives in oncology can also help create a thoughtful and more supportive community. And that’s a lot of what we do here in publishing some of these stories.

Dr. Timothy Gilligan: Yeah, it’s a great question, and an important one. I'm not going to say anything original here, but I believe very strongly, as many people have written, we understand our lives as stories. We understand narratives. We organize ourselves around stories to a large extent. And one of the things I think that is a powerful question to ask myself often in life is, “Am I telling myself a story? Is that the best story? Are there other versions of that story that may be more true, or other stories that are equally true that may enrich my understanding of something?" And so I think storytelling is complicated. Sometimes we tell ourselves false stories. Sometimes we tell ourselves moving stories. But I think one of the things that we see in this work is that life has sadness in it and life has loss in it, and the solution isn’t to hide from it or protect ourselves from it, but I think just to see the best part of the human experience and sometimes the deep meaning in it.

And one of the beautiful things all of us in oncology see with some patients, not all patients is how, when faced with a life crisis, is the sudden clarity about what really matters. And oftentimes relationships deepen and people appreciate the beauty of their connections with others. Diving in and really hearing these stories, getting to know our patients as people is where the richness of the work is. And that's why people go into oncology. When you read applications from residents who want to be fellows, most of them talk about how moved they were working with cancer patients. And I think hearing their stories is a part of that work. And if we stop doing that, we are missing out on what actually made us go into the work in the first place.

Dr. Lidia Schapira: And that's one of the things that struck me about your narrative in that it's not just a lesson in communication or a plea for listening to patients and treating them humanely, even when they seem to refuse therapy, but that you actually talk about being moved and bringing yourself into this and taking the time to connect with the patients. In addition to the fact that in the two cases that you describe here, by doing that, you actually solve the puzzle. You figured out why it was that they either delayed or seemed to have refused treatment when, in fact, both of these people very much wanted to live and had a lot to live for.

Dr. Timothy Gilligan: Yes, that's right. The second case was a much less typical one for me. What was interesting for me about that was that it was the first time I really brought the issue of race and racism into a conversation with a patient. I struggle with that because I know from the medical literature and I know from talking to people I know, as well as patients I've taken care of, that people do encounter sexism, racism, and other forms of bias in healthcare, and we are often scared to talk about it. The reason I wanted to write about that case was that the patient really handed it to me on a platter. She couldn’t have made it easier for me to name it. And it was amazing to me how it transformed the interview after I named it. I went from being treated like there’s no trust. I tell you, it felt very antagonistic interview up until that moment. And then suddenly we connected. And that was interesting because when she was walking out the door - I didn’t put this in the essay - she looked at me and she said, "Now I know why I was referred to see you."

Dr. Lidia Schapira: What a wonderful, wonderful endorsement. I'm sure that made you feel very good. How do you use your experience and the knowledge that you have accrued over years now of practice to teach your students, residents, fellows, and even your peers to be present, to call out injustice, to form important therapeutic alliances with patients? How do you actually do that every day?

Dr. Timothy Gilligan: I don't think it's easy. I think the easier part of it is to enter the room with curiosity and to be attuned to the fact that there are things that you don't know yet that we need to know, that the patient is an expert in their own experience and the patient is an expert in their own body. And if we go in with that humility, that we have medical expertise and they have expertise in their own self and their own lives, that we can work together as a team and try to break down some of the power differential. I think that helps a lot. I think there are certain questions that can be helpful to ask like, "What has your experience in the healthcare system been?" Because oftentimes, we assume one thing, and the patient's experience has been very different. 

I've been influenced recently by work in trauma-informed care. A shorthand sentence for trauma-informed care is that we shouldn't ask, "What's the matter with you?" We should ask, "What happened to you?" And then if a patient is acting in a way that seems odd or difficult to explain, or simply difficult to put up with, we might ask ourselves, "What happened to them that this behavior actually does make sense?” And that if we approach it with sympathy and hear their story, we can work with them more effectively. It doesn't mean we should put up with intolerable behavior, but that oftentimes the behavior or the decision-making starts to make sense if we get more information and find out more and come in with a less judgmental attitude and more curious attitude. It's hard, and I don't have a simple answer, but I do think those tools, curiosity, listening, humility, and recognizing that the patient is a different person with a different experience of the way they are navigating through the world, even if it doesn't make sense to us, does make sense given what their experience has been.

Dr. Lidia Schapira: Tim, I certainly appreciate and am so glad that you continue to think about these problems, that you write about them, and that you make it sound simple for us to connect with our own sense of vocation and to try to bring everything to the bedside, not just a list of new therapies. So thank you for that, and thank you for sending your work to us.

Dr. Timothy Gilligan: Thank you for having me today. It's been a pleasure talking to you.

Dr. Lidia Schapira: And with that, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Guest Bio: 

Dr. Timothy Gilligan is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute.

An assistant professor reflects on racism in the hospital workplace.

TRANSCRIPT

[MUSIC PLAYING] LIDIA SCHAPIRA: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories-- the Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

MARJORY CHARLOT: Recently, I was caught off guard when my white elderly patient, lying in his hospital bed with his daughter and wife at his bedside, asked me to hold my hands up against his because Blacks have longer fingers. I am a medical oncologist and an attending physician, supervising a team of two medical interns, a medicine and a pharmacy resident and a medical student.

This incident occurred during our routine morning rounds on the inpatient oncology service. The silence in the patient's room was palpable. My emotions in that moment spun in all directions from the shock of this patient's unexpected derogatory and racially charged statement. I was angry, upset, humiliated, and embarrassed all at the same time.

The stereotypical and discriminatory generalization that Blacks have longer fingers and his request for me to hold my hands up to his was demeaning. His focus on my skin color and physical features, as opposed to my medical knowledge and expertise, was revolting and an insult to my identity as a physician. To get on with the task at hand of reviewing the patient's overall status, I decided to ignore his comment, gently held his hand, and addressed the remaining questions his family had regarding his condition and hospital course.

As I walked out of the room, I felt compelled to immediately debrief with my team, but I soon realized that I had no idea on how I was going to do this. Some might have advised me to brush off this experience and pretend it didn't occur. Others might have pointed out that this patient was elderly, likely had hospital-associated delirium, and may be unaware of the meaning behind his comments.

In the moment, however, I felt two things to be true. First, this was an explicit example of interpersonal racism during a patient-physician interaction. Second, despite the patient's action, I needed to uphold the oath I took almost 15 years ago to provide my patient with the best care possible while forgoing the personal attack on the essence of who I am as an individual and physician.

The collision of my identity as a Black woman, physician of color, academic physician leading a team of trainees, and a doctor who feels an obligation to provide good care to every patient, regardless of the circumstances, contributed to how conflicted and uncertain I felt in the immediate moment. The culmination of my four years of medical school, three years of internal medicine residency, three years of hematology-oncology fellowship, and nine years as a staff medical oncologist did not protect me from being viewed through a racial lens.

I knew that I could not go on about business as usual and was unsure how best to respond in that moment. I quickly said to the team that what the patient said was inappropriate and racist. Following this, my intern sincerely apologized. I told her there was no need for her to apologize because she was not at fault, and sadly enough, this was the extent of my debriefing.

My husband, who is white and a fellow physician, was mortified when I discussed the incident with him that evening. As I was processing this incident during our conversation and then sharing this experience via a group text message with a close network of friends from residency, who for the most part identify as female physicians of color, I came to the realization that I needed to debrief further with my team. I cannot not let this teachable moment pass without the recognition it clearly deserved.

Explicit discrimination in the workplace from patients is not uncommon for physicians of color, physicians with an accent, physicians who wear traditional clothing or head covering, or physicians with a name that is unfamiliar or perceived as difficult to pronounce. The collision of the multiple identities that I embody as a Black female academic physician is likely experienced by others underrepresented in medicine.

In the midst of this encounter with my patient and as an academic, I wondered if there were best practices to guide a response to interpersonal racism during a medical encounter. I also wondered what protections are in place within the hospital for physicians experiencing racism from their patients. I learned that our hospital does have a policy on nondiscrimination against providers and staff, that these violations should be reported to the attending physician or nurse leadership, and that it is the attending physician's or nurse leadership team's responsibility to discuss this issue with the patient. There are also resources and a script available online to guide discussions when a patient requests to change providers on the basis of the patient's discriminatory views.

However, as an attending physician experiencing racial discrimination from a patient who is not requesting a change in provider, I felt the immediate responsibility to address this but did not have much guidance. The morning following this incident, instead of the planned teaching on the management of malignancy-associated hypercalcemia, I opted to discuss racial discrimination against medical providers. Without access to evidence-based guidance at my fingertips for the questions I was contemplating, I used what I experienced to generate this discussion.

Unlike my usual didactic lessons that are well prepared in advance, engaging, and presented with confidence, I approached this discussion with my raw emotion and feared that my words would fumble. I also feared that my trainees would be uninterested or uncomfortable with openly discussing race and racism. However, I was pleasantly surprised by my trainees' reaction and their level of comfort in engaging in this discussion. A few of my trainees shared their personal experience witnessing racism outside the workplace while others attentively listened and were perhaps not ready to share their thoughts or feelings in that moment.

Leading this discussion was a moment of vulnerability, but it was also empowering to accept the discomfort in creating this necessary dialogue. After our team discussion, my intern explained that her apology after the incident was because she felt sorry I had to go through this experience and that she was not apologizing for the patient. I was encouraged by her acknowledgment and her apology, which left me with a sense of optimism about the next generation of physicians and their willingness to recognize inappropriate and unjust interactions during the medical encounter experienced by physicians underrepresented in medicine.

But is this enough? As I reflect on how my team of trainees, from their position of privilege, could have further responded as an ally, I recognize the need to provide trainees and colleagues with communication tools and skills to feel empowered to respond against discrimination during medical encounters. Calling out the inappropriate behavior, generating a response aligned with human decency and fairness, and creating opportunities for open discussions with trainees can be a start in addressing the gap in best practices in guidelines on confronting discrimination as physicians in the hospital workplace.

As an attending physician, I acknowledge that I am in a position of power, and most often, patients are in a vulnerable state and at the mercy of their providers. In this particular encounter with my patient, I don't believe directly addressing his discriminatory comment with him would have made a difference in his care or his outcome.

Dismissing this encounter altogether could, however, have had a lasting impression and influence on how my team of trainees approached discrimination during other medical encounters. Trainees of color, as well as white trainees, need teaching on how to debrief and diffuse similar incidents. Our collective responsibility as physician leaders is not only to supervise and educate our trainees about the art and science of medicine as it pertains to managing medical conditions but is also to model humility and to teach them how to recognize bias and discrimination, feel safe to openly discuss discrimination of any kind, and most importantly, to teach them how to nurture and support their peers and colleagues facing discrimination.

Even when we are not comfortable and without formal training in dealing with patient-directed racial discrimination during the medical encounter, it is important for us as physicians to have these meaningful conversations outside of our comfort zone with our colleagues and our trainees. Admitting vulnerability as a seasoned physician is difficult, but we should feel compelled to lead these conversations to cultivate a medical community that stands together against all social injustices.

In retrospect, I am confident that this experience will continue to have a lasting impact on my trainees, and it served as my initiation to the professional responsibility I feel to create dialogue with my colleagues and trainees. I am optimistic that sharing this experience will empower other trainees to advocate for diversity, equity, and inclusively as they, too, become leaders in the hospital workplace.

In holding my patient's hands as a sign of my commitment to providing him with the best care possible, I felt empowered. Similarly, I will also hold the hands of my trainees, committing to lead them during these racially charged and divisive times, so that we can stand together against racism and injustices of all kind.

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LIDIA SCHAPIRA: Cancer Stories-- the Art of Oncology. With me today is Dr. Marjory Charlot, who is an assistant professor at UNC in the Department of Medicine and the Division of Oncology. Welcome, Marjory, to our program.

MARJORY CHARLOT: Thank you. Thank you very much for inviting me.

LIDIA SCHAPIRA: It's a pleasure to have you, and thank you so much for submitting and for writing this essay about such a difficult topic. The first question I have for you is this. Was it hard to write the essay?

MARJORY CHARLOT: It was quite difficult for me. I remember after the episode happening, just kind of when I got home, I was like, let me just jot down what I'm feeling in the moment. And I just sort of just threw some words onto paper.

And it's actually interesting for me because it's not a process that I've ever gone through in terms of experiencing something either in the clinic or in the hospital and then feeling this need to go ahead and write. But what I wanted to do-- and this was certainly not the actual essay, but it was just a way for me to express what I was experiencing, pen and paper and just kind of leaving it there and having that space to kind of have this conversation with my husband and close friends, was pretty much the process that I went through.

And then really, I didn't go back to that experience for several months, and so then I went back and said, oh, these are the things that I was experiencing at the time. And so it was interesting.

I think with sort of the resurgence of everything that's been going on in the country around the injustices among the Black population in particular, I think that really drove me to sort of go back to this essay and to really think about the things that I experienced and figure out a way-- how do I share this information not only with the trainees who are involved with this particular episode but really with everyone, colleagues, people in oncology? Just because I just felt the need to give back and really felt the need-- how do we respond as a profession? And so that was kind of my process in terms of writing this.

LIDIA SCHAPIRA: So that's fascinating, so writing both as a means to process a difficult experience, taking the time to really let the experience sift through all the levels, and then crafting a beautiful essay that also serves as a message and a call to action in many ways for your colleagues. Let me ask you another question that came up as I was reading it. You talk about the collision of multiple identities that you embody as a Black female physician, and I wondered if you could unpack that sentence a little bit for me and perhaps for other listeners of the podcast and readers. How did you come about thinking about all of these multiple threads that together define your identity? And how do you think about this?

MARJORY CHARLOT: Sure, sure, so in terms of thinking about who I am on a day-to-day basis, the first and foremost, I think, when people see me or meet me, it's pretty apparent that I'm a Black woman. And so that's one part of my identity that for lack of a better word is quite obvious. You see me in person.

And I think that plus my identity as a physician, as a teacher-- and it's quite interesting because I think about these things particularly when I am interacting with patients. When I have a patient that happens to be Black, I think that there is this sense of familiarity, a level of comfort that I-- and this is just from years of experience that I've just noticed, that when I walk into the room, it's sort of that unexpected or this recognition like, well, we've got something in common, even though it may just be on the basis of gender.

Or it may be on the basis of race and gender. So I think that that piece of it is very central in terms of how I interface and interact with my patients, and so that's part of that multiple-identity piece that I write about in this essay.

I think there's also this part of being a physician as well as being an oncologist. I think that there's something very different in terms of being a provider that specialized in one particular area, and so I think that also speaks to who I am.

And then I think lastly for me, being an academic, so being in an environment where the expectation is not only to care for patients but also to be a teacher and a role model-- and so it was thinking about all of these different roles that I play in any particular interaction with patients or in the work environment sort of plays into this multiple identity issue that I briefly discussed in the essay.

LIDIA SCHAPIRA: So let's talk a little bit about that. The number I hold in my head-- and please correct me if I'm wrong-- is that perhaps 1% of all oncologists or less or fewer are Black women.

And the other piece about this is all of the isms that we can attach, the sexism, the racism, all the other isms that really provide such a hurdle for us or are such a hurdle in thinking about how we can be our best selves and perform at our best as academics as oncologists. I wonder if you can reflect a little bit on that. How did all of these different aspects that shape your identity guide your decision to stay in academia, and how do you think that your identity influences the kind of academic that you are and aspire to be?

MARJORY CHARLOT: That's a great question, and so, I mean, I'll tell you a little bit about me. So I grew up in Boston in a neighborhood that was predominantly Black. I'm a first-generation American. My parents originally came from Haiti.

And so what influenced me, first of all, to even become a doctor was having a Haitian pediatrician, who at that time actually did house calls. And so this pediatrician was so integral to the community. He was a community member, and so that really influenced the type of physician I wanted to be. I wanted to be someone that could relate to the community of patients that I was taking care of.

And then having gone through all of the medical school and training that I've been through, it wasn't until, I would say, during my residency in Boston-- I did residency in the hospital that I was born in, and so I could relate with my patients from saying, oh, I know that street, or I know this restaurant or this shop or this organizer in this particular community. And so for me, that connection really influenced my decision to stay in academics because having gone for residency and fellowship, connecting with students, connecting with mentors, I felt like that was a community in and of itself.

And so for me, I wanted the opportunity to really influence trainees, trainees that look like me, trainees that don't look like me, trainees who want to learn about oncology, learn about community, learn about underserved patients, because that's who I feel I represent in terms of the environment that I grew up in. And so that really influenced my decision to stay in academics, because I wanted to be a part of really having an influence on the next generation of trainees to ensure that all voices really are represented in this field. And so that, for me, as a Black woman from an urban area that was not necessarily affluent-- but I wanted to be able to speak to that experience and to be a voice for other students coming up who live that experience.

LIDIA SCHAPIRA: Let's talk about where you are now. In the essay, "power" and "empowered" appears multiple times. As an assistant professor and team leader, you are now both in charge and confronted with this episode of racism.

What do you do? You read the protocol for the hospital, and it basically says, you are the person with the most power. How did that feel for you, and what did you do with that power?

MARJORY CHARLOT: That's a great question as well. I think initially, when I was trying to figure out, OK, well, what do you do when this happens to you? Just because I wasn't clear exactly, what is the responsibility that I have as a provider, as this patient's attending of record in terms of going through this experience?

And so at the time, I can tell you, it was not a powerful moment during this interpersonal racism event. But it wasn't until after in terms of walking out of the room and knowing that I needed to address this and I needed to figure out, what exactly do I come away with with this experience? And what exactly do my trainees, who are in the room, come away with this experience?

And I acknowledge the fact, yes, I am the attending of record. I lead the team, that I am in a position of power, and this patient is a patient. And like most patients, I think it is a vulnerable moment to be in the hospital. And so understanding the power dynamics as a physician and a patient-- I think that was one of the thoughts that came into my mind initially and then also this feeling of, I need to do something about this. I can't let this go.

I also stressed the importance of being an academic physician. My role, I feel, on the wards is primarily to teach. I feel like the interns, the residents, the pharmacy medical students, the students are there to learn.

The interns-- they're the doctor. They're doctoring. They're providing care, and my role is really to advise, supervise, and to teach. And so I felt that given that I have the luxury in academics to not only care for patients but to also teach my trainees, I felt like that was the power that I was really focusing on and really trying to harness as I went through this experience and wanted to really guide my team at the time.

LIDIA SCHAPIRA: Let's talk a little about that. You say very specifically in your essay, which is part of the message, that you realized that it was a teachable moment and that part of the role of an academic physician is to teach communication skills so that other members of the team could respond to situations like the one you describe here. I love that thought, that by giving these skills and tools, the team could respond to the situation if another situation like this was enacted. Tell us a little about what those communication skills are and how others should be teaching those to their students and mentees.

MARJORY CHARLOT: Right, and so I think with regards to the communication skills, one of the first things that I thought was important was really to give the trainees the space to speak because I feel oftentimes-- and this is in my experience, talking about race and racism while on the wards. That's not something that you just generally do. It's not really part of the curriculum. It's not part of the evaluation form, so it's not something that organically happens.

And so for me, I thought that having that space for my trainees to really just discuss what just happened, what were their thoughts, how are they feeling, and really getting a pulse to what is kind of already happening either within their training programs-- since I have a team of both pharmacy and medical students as well as internal medicine residents on the ward, it was really an opportunity for me to get a better understanding on what exactly do they talk about in their training. Do they even discuss race and racism during their training? So I thought that that was the initial piece of this communication skill, that that's necessary, is really just being able to listen.

So I think a lot of times, we think about, oh, we need to teach people this is what you say. Here's the script that you use. But I think really offering that space is part of that communication. That space to talk, that space to listen, I think, is number one.

Number two, I think, also stressing the importance that it's not so much my role, either as a physician leader or either as the person who's confronting this issue of racism or really any of the isms-- it's not my specific role to necessarily respond especially in the moment where a lot of this is very fresh, and you can be very stunned and shocked. And it's really difficult to even talk or to speak, to say anything.

And so thinking about those around us and what their roles are as allies-- and reason why I bring this up is because I think that perhaps-- and I can't make this assumption because probably for some allies, as I could see, at least in the room when I went through this experience, that it was just complete silence. So I felt that maybe everyone else in the room was also experiencing this shock and felt stunned and didn't really know what to say, and I think that that's OK.

But I think what's not OK is to just completely ignore it. And so with communication skills, I think it's really important to-- even if this is not an area that the individual may feel comfortable in discussing, that it's important to just say, OK, let's take a step back. What just happened in the room was not OK.

And for me, that was a process that I went through where I was like, OK, it's not OK. It's ignorant. It's racist, and it's not right, and kind of left it at that.

But I think going back, whatever that time and space may be, going back and saying, OK, team, what just happened was not OK. What were your thoughts? What were you feeling? How do we as a team process this?

And again, I don't really have the necessary answers in terms of the best ways to do that, but I do know that listening, calling these inappropriate actions out, and having that discussion-- I think that's the beginning of developing these skills on how best we can communicate with each other as a team. And then I think the other piece-- if appropriate, going back and communicating that with the patient as well. I don't really get into that that much in this paper, this essay, but I think that's certainly a skill when it's appropriate. And I think that there may be different nuances within all of these interactions where the appropriateness of going back to a patient really is going to be determined, I think, by the individual or the team members that are affected by it.

LIDIA SCHAPIRA: It's worth repeating that communication skills training is often about accepting and understanding the emotional load of the work. In this particular case, as you say, a lot of it has to do with being confronted with what is unjust. Listeners will perhaps have other associations and memories of a time when they have been faced with this, and to add to the challenge you describe here is that you are the top doctor for this patient, making it an almost unbearable situation.

I thank you for describing this to the readers to help us all feel your anguish and identify opportunities to respond in such a situation. Your essay provides a very important contribution to our professional literature.

So my last question is this. I'm sure you've thought about it, and you hint at this at the essay. But if there is a next time-- and there probably will be-- can you imagine how you will react?

MARJORY CHARLOT: Right, that's a very interesting question in that it's so hard to predict only because-- and the reason why I say this, too, it's only because these moments-- they catch you by surprise. And then there are times where you're not necessarily surprised in terms of my experience, again, as a Black female physician in that there are times where I come in, and I'm like, oh, I know what I'm walking into. I'm guarded.

With what I described in the essay, it was shocking to me just because this was a patient that I had an established relationship with throughout the hospitalization, and that comment just came out of left field. It wasn't an initial interaction with the patient. But I feel that if that's the first thing that's coming at me when I first meet a patient, I feel that that's a lot more comfortable to address head on.

But I think if you already have this established relationship and then all of a sudden, you hear this type of comment, I think it makes it quite difficult. So it depends on what that next time is like in terms of where I am in that day. How many microaggressions have I gone through that day? So I think all of those pieces really influence my response.

And so it's really difficult to say exactly-- OK, I wrote this essay. I've processed. Now I know I'm prepared for the next time. I wish it were that simple, but unfortunately, it all depends on what's happened that day, that week, that month, where we are in the country with regards to different social injustices. So unfortunately, it's one of those things that I can't predict how I would respond.

LIDIA SCHAPIRA: It's refreshing to hear you say that. Of course, it's impossible to know. Thank you for sharing and taking the time to write about it and sending it, so our thoughtful community of oncologists can think about how they can also be allies in addressing racism in the clinic, in the office, or in the hospital.

MARJORY CHARLOT: Thank you so much, Dr. Schapira. It's really a pleasure to have this opportunity to share my story and to lift my voice in this area. So thank you again, and thank you to the Journal for accepting this essay.

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LIDIA SCHAPIRA: Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you are there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer.

TRANSCRIPT 

Narrator: Preparing for the End Game, by William T. Beck, PhD (10.1200/JCO.22.01758)

Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case.

Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay.

Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well.

My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed.

One frequently hears about people who have survived near-death experiences or those who have been diagnosed with a terminal illness, having an epiphany and wanting to live each day to the fullest extent possible. One also hears about realists who exhort us to live every day as if it were our last. Certainly sound advice. But do we normals really adhere to these dictums? Many people probably do, but my experience, both personal and from talking with friends, is that most of us still go about our lives doing the quotidian things that we have always done. There is always tomorrow, but Jordan's illness has caused me to rethink that. Indeed, it has become increasingly clear to me, finally, that I should not put off doing things for another tomorrow, a tomorrow that is not guaranteed.

Despite knowing—in the abstract—that much more of my life is behind me than in front, my good health and full days have led me to think that this can go on for some time, with the inevitability of death still relatively far in the future. Jordan's situation, however, has changed that perception and has got me thinking about how I would like to spend my remaining days, hopefully many, and thinking about how to really prepare for this end game, taking these final laps.

Paul Kalanithi, a young surgeon, wrote so tenderly in When Breath Becomes Air2 about his struggles while suffering the ravages of lung cancer and his hopes for his wife and young children. Even at my advanced age, I too have similar hopes for my wife, children, and grandchildren. And Christopher Hitchens chronicled, in Mortality,3 his last year with esophageal cancer as fiercely as he had always done in his critical atheist's view of the world. But it was not until Jordan's sickness and death that I have taken Hitchens's clear view of life's limitations to heart.

In his book, Being Mortal,4 Atul Gawande, the physician-writer, has chronicled both the advances and limitations that modern medicine has brought us as we face the end, including the complications that limit our autonomy in this passage. Gawande notes that as we age and become infirm, either as a normal process or because of disease, we become more dependent on medical and social networks that may, unfortunately, effect on our independence. Gawande suggests that a good death may be difficult to achieve but a good life less so. I saw this good life in Jordan's terminal illness. Indeed, another physician-writer, Oliver Sacks, emphasized in a short collection of four essays entitled Gratitude,5 the utility of a good and fulfilling life in helping us cope as we approach the end. Near the end of his life, as his body was being consumed by cancer, Sacks continued to do what he always did, for as long as he could: His days were always full, and he wrote beautifully of his clinical and social observations. Importantly, Sacks expressed enormous gratitude for his life as a sentient and thinking person, who loved and was loved, and whose life was consequential. What more can one want?

My friend Jordan was such an individual: sentient, smart, and funny; a man who lived a consequential and impactful life, who loved and was loved. His illness, however, was not one of going softly into the good night, as was depicted in the movie Love Story.6 Toward the end, my friend suffered with pain, balance problems, fractures from falls, shortness of breath, insomnia, and the like. But through it all, he presented, at least to me, an admirable grace and equanimity that gave us all hope that despite his suffering, there would be one more day, one more week, one more month.

My wife and I went out to northern California last winter to visit Jordan and his wife, and although unsaid, to say good-bye. But now, more than a half year later, he died, just days short of their 50th wedding anniversary. We have stayed in close contact with Jordan's wife since his death. The funeral was private, but my wife and I attended a subsequent memorial service for Jordan at which family, friends, and colleagues remembered him and his consequential life and bid him a proper farewell.

So, here we are. My good friend is gone, and his struggles have been hard to watch, even from a distance, but he has helped me see more clearly that this all does come to an end at some point.

So how do I want to pursue this end game? Certainly, I want to stay engaged in my science-related activities. But I also want to use what time I have left while I am healthy to spend as much time as I can with my wife and family, to be with good friends as much as they will tolerate me, to continue to read, to go to theater and concerts, to travel, finding humor in life, and enjoying good wines and food—all the typical things that people do and say they want to do as they approach the end game. Indeed, I want to do as many of these things as possible, but with a renewed sense of wonderment and gratitude, gratitude in the way Oliver Sacks expressed it. My friend, Jordan, the academic, still has some lessons to offer, so I will try to follow his example to live as good a life as possible, and if I become infirm, I will try to remember how he approached the end: with grace, courage, and equanimity and reflect on all the good things I have had in this life, with a great sense of gratitude.

Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University.

Today, we are joined by Dr. William Beck, a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago. In this episode, we will be discussing his Art of Oncology article, 'Preparing for the End Game.'

At the time of this recording, our guest has no disclosures.

Bill, welcome to our podcast. Thank you for joining us.

Dr. William Beck: Thank you, Lidia. I appreciate the opportunity. I think this is a unique and valuable feature of JCO, and I hope I can do it justice.

Dr. Lidia Schapira: It's terrific to have you. Tell our listeners a little bit about the motivation for writing about Jordan, and the effect that his illness and passing had on you.

Dr. William Beck: Yes. Well, his illness and death made me think of my own mortality, and how if it were me, would I want to spend whatever remaining days I have, hopefully, many. But hopefully, in a way that would allow me to honor his life, and also do justice to my own situation. So, that was the nexus of the issue. I spoke to a writer friend, Eric Lax, he's written a number of books; one is, The Mold in Dr. Florey's Coat. If you haven't read it, I highly recommend it. It's about commercialization issues during World War II, and he's written some other books as well, a book with the hematologist Robert Peter Gale on radiation. And I asked him what he thought about this, and he was very positive. As you, I'm not accustomed to opening myself up in the scientific literature. I write scientific papers, and they're not emotional. One might get emotional about the reviewer's comments, but that's another story.

And so, this was a difficult thing for me to write, but I felt if done correctly, it might be useful not only to help me articulate my own feelings, but it might be useful for others, especially oncologists with whom I've been around in my entire professional life, and who deal with these matters daily, as you do. But most likely, and of necessity, keep their thoughts and their own mortality locked away. And I sort of thought that this might be a way to help others think about ‘Preparing for the End Game’.

Dr. Lidia Schapira: You bring up some interesting points because in order to write a piece that will resonate with others, you have to allow yourself to be vulnerable, and that is not something that we are taught to do in our academic and professional lives. Was that hard for you?

Dr. William Beck: Very, yes.

Dr. Lidia Schapira: And how did you work through that period of deciding to make yourself vulnerable and then share that with colleagues whom you may never know or meet?

Dr. William Beck: Thank you for that question. I wanted to write somewhat of an homage for my friend, Jordan, and that made it a little easier to open myself up. And I might add, I shared this, after it was accepted, with Jordan's family - his wife, who is a friend, and his two adult children. And they all very, very much appreciated what I had done. So, I felt I was on the right path with that. So, it was in part for an homage to Jordan, and I had walked with him and his wife during his illness, and then with his death, and I wanted to mark the event in a way that I felt more than just giving money to a memorial fund. I felt I wanted to make it very personal, he was a good. I don't know if that answers your question, but that's why I started it.

Dr. Lidia Schapira: In thinking about your essay and the way you chose to honor your friend and his memory, what do you think is the message for some of our young readers?

Dr. William Beck: That's a good question. I put myself in the 40-year-old Bill Beck mindset, and back in those days, as I said in my essay, you know, everyone has to die, but in my case, I thought an exception would be made. Jordan's death, and those of others around my age have led me to understand that an exception will not be made, and I want to make the best of it, and if our young readers who know that this is an abstract that's very far away, but it becomes more and more of a reality as you approach the end, and I'm guessing that our younger readers who are oncologists can wall that off with difficulty, but can wall it off to a certain extent. But it's there. It's inescapable, and so, maybe preparing early, if it even makes you think about enjoying a little bit more time with your kids, enjoying a vacation for another day, or even putting a little bit more money away for your IRA for your retirement, that could be very useful for them.

Dr. Lidia Schapira: On the flip side of that, Bill, you write in your essay that you have continued to remain involved in your science, and I imagine that's because you love your science. So, tell us a little bit more about how you're thinking now, as you are mature-- I won't use the word senior, or old, about continuing to remain involved in a career that is not just work, but something that you love.

Dr. William Beck: I could not imagine retiring. What I enjoy about my retirement is that I basically do everything that I did before, except the administrative part - the running a department for so long. And I do it on my schedule, not somebody else's schedule, and that is liberating. I just came back from a two-hour lecture that I gave yesterday; I mentor young people, I review grant applications and manuscripts, I read the literature. So, I stay involved. I can't imagine not being involved. And as Oliver Sacks, whom I've cited in the essay, he went at it all the ways best he could all the way to the end, and I hope that I will have that opportunity to do so as well.

Dr. Lidia Schapira: What advice would you have for some of our listeners who are themselves accompanying a friend who is ill, or perhaps a relative who is facing a chronic or terminal illness?

Dr. William Beck: I'm loath to give advice, but I would suggest that they might want to be there as much as their friend wants them to be there for them. To be there, and for them to know that they're there. I was in a unique position because I knew a little bit about the cancer field, and I could help Jordan and his wife navigate the shoals of interacting with physicians, and understanding their drugs, and getting second opinions, actually, for them. So, I was in a fairly unique position, but I think that the key thing is to be there to the extent that the individual wants you to be there with them is important. That's what I've learned from my deep emotional involvement with Jordan, but with others as well.

Dr. Lidia Schapira: As you know from reading the essays we've published in Art of Oncology, Grief is a common theme, and I ask many of our authors to recommend, perhaps, some books they've read, or works of art that have helped them in processing their own grief. So, let me ask you if you can recommend any books, or poems to our listeners.

Dr. William Beck: I'm not much into poetry, but I did happen to see an amazing interpretation of Psalm 23 on the Jewish Broadcasting Network recently that was eye-opening to me as a non-religious person. That was very interesting. In terms of books, I think a good start is the beautiful essays of Gratitude by Oliver Sacks. I've started to peel into, and peer into a book on Morality, by Jonathan Sacks-- no relation, I don't think. He was the Chief Rabbi of the UK. And in terms of art, I can think of music - the ‘Pastoral’, by Beethoven, and the ‘9th’, by Beethoven, are the ones that just are so uplifting to me, that I think would be very important to calm one's soul. Also, if I might add, The Stones are pretty good too, for that.

Dr. Lidia Schapira: So, let me conclude our interview by asking you a little bit more about the role of storytelling, and essays, and narrative, in helping us come together as a community of professionals who are actually dedicated to looking after patients who are seriously ill. How have you used stories in your approach to Medicine and Academia, and what do you see as the role of these narratives in the future education of oncologists and hematologists?

Dr. William Beck: So, I think young people, especially, need to hear stories of how these things begin. They need to hear origin stories, and middle stories, and end stories. Joseph Campbell, is one who's delved into where we came from, and about storytelling, as being very important in development of societies and traditions. So, I've tried in my work, even though it's scientific work, and maybe some of my reviewer critics would say, "Well, it's all stories and fables," but I've tried to develop several lines of science storytelling for our colleagues. And I think in general, whether it's in science or this kind of essay, yes, it's very important that the young people get outside of the, "What do I need to know for the exam?" mentality, to look at the bigger picture; and I'm afraid that's getting lost in modern education. The guy who introduces me, when I give the general lecture to all the students who are first time, first day in the room, never to be in the room again, always says, "And Dr. Beck won't answer any questions about what's on the exam."

Dr. Lidia Schapira: Well, I thank you for sharing some of your humanity with the readers of JCO, through the essay. I know, as you told us, during the review, that you're not used to writing these kinds of essays, and you're much more comfortable with scientific work. But I think we need to show the human side of our scientists. I think that Jordan's family is right in thanking you for the tribute you paid to him through this essay, and I'm very glad that you did write it, and decided to share it with us.

Dr. William Beck: Thank you. Well, I'm really glad that you have this venue, and I'm honored to have my essay published in it. I thank you, and your colleagues.

Dr. Lidia Schapira: Thank you, Bill.

Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Bio:

Dr. William Beck is a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago.

Listen to ASCO’s JCO Global Oncology's essay, “Capturing Memories for Children with Cancer in a Low-Resource Setting” by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. This Art of Global Oncology essay is followed by an interview with Silverstein and host Dr. Lidia Schapira. Silverstein shares her launch of a framed picture legacy project in Malawi for those with childhood cancer in a low-resource setting.

TRANSCRIPT

Narrator: Capturing Memories for Children With Cancer in a Low-Resource Setting (10.1200/GO.23.00001)

I was the paparazza, capturing salient moments from our program’s “Palliative Care Day” where children with cancer and their guardians played games, completed artwork, sang and danced, and enjoyed meals together.

It was a precious day for these children with life limiting disease to shed the weight of their diagnoses and instead share laughter and joy with one another. As a pediatric resident on a global health year in Malawi, I was invited to document our team’s activities with the intent to share with potential donors. However, with a click of the camera’s button, I realized the opportunity for an unintended greater impact. I scrolled through the day’s pictures and could not help but think the recipients of the pictures should not be strangers, but instead the families or even children themselves. Although families had already provided consent for each picture, they never expected to see them.

Pictures capture moments in ways words cannot describe. Coming from a Western society where we celebrate and honor life in pictures, I wondered what happens when you do not have a camera or phone capable of capturing these events. What visual memories do you have when your child dies? Does it feel differently when remembering a lost child without pictures to look at? Do vivid memories fade and, in time, make it difficult to imagine your child’s face?

As I reflected on this, I acknowledged the overwhelming frequency of childhood cancer death in our setting—in contrast to a .80% survival rate for childhood cancer in the United States,1,2 the childhood cancer mortality rate is estimated to be as high as 90% in sub-Saharan Africa.3 Most of these children present with advanced disease, where disease directed treatment is less likely to be effective,4 and limited availability of medical and supportive care further contribute to poor outcomes. 

Although progressive medical infrastructure has sprouted across regions of sub-Saharan Africa to help address these disparities, widespread gaps exist in interdisciplinary services. Families of children with cancer face substantial psychosocial, emotional, and spiritual distress. Many families are fortunate to have robust community support, but we must consider how we, as a medical system, can further support families. Our role includes providing comfort to families, especially when curative medical therapy is not an option and a child’s final days near. We must integrate humanities and holistic support for our families as we scale up global health programs, just as is already done in high income settings. 

So, when I set my camera aside, I earnestly turned to my local colleagues for their counsel. They grinned as they confirmed the potential value of my blossoming idea. I went to a nearby store where I printed the pictures and purchased basic supplies—glue, string, tape. We collected old boxes from prior hospital pharmacy deliveries and bought local vibrantly colored fabric—chitenje—from the market. From these materials, our first frame was designed. These local materials were obtained on a minimal budget.

I shared the first picture and its frame with our social worker who presented the aunt of P with the picture (Fig 1); P had leukemia and had died recently from complications associated with central nervous system disease. In his picture, there he was, coloring during the event we held a few weeks prior. He wore sunglasses and shared that smirk we had all quickly fallen in love with. As she graciously accepted the frame, the corners of P’s aunt’s mouth turned upwards into a rarely seen smile; she bowed her head silently as we spent a moment remembering P and sharing in his memory.

The next week, I had the privilege of joining our team on a bereavement visit to the home of B’s father. B had recently died at home and our team visited to provide grief support and share prayers together. We sat in a circle on well-worn couches and chairs as B’s father offered he did not have any physical belongings or keepsakes of his son beyond leftover medical supplies from home wound care management; any clothes or toys were passed along to other children and other families. As he shared with us, he removed a cloth covering their makeshift table to reveal a cardboard box, inside of which he retrieved these remaining medical supplies so they could be given to another family. We pulled out a framed picture of B that was taken before the program had formally started but was printed and framed just as the others. I watched as B’s father’s eyes welled up with tears in surprise and gratitude; he accepted the gift and stood to shake each of our hands.

One by one, we started taking more pictures. My colleagues explained the idea of the project as we obtained consent from each new family. Often we were met with a bit of initial skepticism but also willingness to participate. Pictures were taken away from the crowded medical wards and instead in courtyards with benches, grass, and trees as possible. As we delivered the first batches of framed pictures to families, the skepticism was quickly replaced with enthusiasm, and families embraced the program. We could not seem to print consent forms fast enough, as caregivers changed outfits, brushed their hair, and sought us on the wards to request portraits. They claimed their pictures like prizes. Some of the children lived to see them. Others died.

The picture project served as emotional support for families, most of whom had or would lose their children. In time, the program transitioned from volunteers constructing frames to caregivers themselves making the frames together; they sat in open green spaces and connected, providing an organic social support system for one another. 

With the start of the COVID-19 pandemic, I returned to the United States to continue my training, and my colleagues in Malawi faced new challenges of their own. Just as staffing shifted at my home institution, so too were modifications made in Malawi to optimize patient and team safety. Although our framed photograph program paused similarly to many supportive care programs across the world, months later, my colleague shared a picture with me: a group of caregivers gathered on a lawn, a pile of frames and photographs scattered on the ground, the program restarted, and the memories being created and shared once more. 

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. In this episode, we will be discussing her Art of Global Oncology article, ‘Capturing Memories for Children with Cancer in a Low Resource Setting’. 

At the time of this recording, our guest has no disclosures. 

Allison, welcome to our podcast, and thank you for joining us.

Dr. Allison Silverstein: Thank you so much for having me.

Dr. Lidia Schapira: Allison, your essay captures an experience that you had when you were working in Malawi as a medical resident or pediatrics resident. Tell us a little bit about that.

Dr. Allison Silverstein: Thank you. I participated in a four-year pediatrics global health residency where I completed three years of my residency in Houston, Texas, and one year of my residency abroad, working clinically in Lilongwe, Malawi. During that time, I split my time working with children who have HIV, as well as working in the pediatric hematology and oncology wards, both inpatient and outpatient.

Dr. Lidia Schapira: Where did your passion for global health start, and where is it now? Where is it taking you?

Dr. Allison Silverstein: I think I have always had a love of traveling and experiences, learning about new cultures, meeting new people. And when I was in medical school, I participated in a one-week more voluntourism-type trip, admittedly. And I remember handing a woman who had rheumatoid arthritis, like 30 pills of a medication, and leaving that encounter and feeling just gutted that either these medicines would work and in 30 days, she wouldn't be able to get more. Or they wouldn't work, and she wouldn't be able to follow up to try and help relieve her symptoms. And I came back from that trip and was just really excited to engage more in really sustainable practices. And so I've spent about two years cumulatively living abroad in a few different countries in Africa, and that has cultivated a passion for global work in terms of capacity building and policy, done some research, and then more recently, really engaging on a clinical level. 

Dr. Lidia Schapira: What was it like as a medical resident and practitioner in Malawi?

Dr. Allison Silverstein: Gosh, I miss that time so much. Every day I was excited to go into work, and I felt this just passion and, truthfully, a personal value that I was a part of something really meaningful. I worked with just a group of incredible humans in all sorts of different disciplines, and being able to learn together and grow together was amazing. It was admittedly also scary at times. I was a resident and had to really acknowledge my limitations and what my comfort level was, coming from a very different setting. But I think I really ultimately embraced that and grew a lot throughout that experience.

Dr. Lidia Schapira: So, in your essay, you describe meeting kids and families with cancer and introducing to them some new ideas. Tell us a little bit more about that.

Dr. Allison Silverstein: I had a pretty decent camera, very point-and-shoot, knows more than I do about how to take pictures. And I remember participating in what we were calling a palliative care day, where children from their community and their families, as well as some within the hospital, were able to come and just create joy altogether. There was singing, there was dancing, and someone had asked if I would take some pictures to share with potential donors for the program. And, of course, I was ecstatic to get to join and be a part of things. And as I took pictures, I looked at them, and I just had this kind of an aha moment of this blossoming idea that the recipients of these pictures should really be the children and their families. Knowing that most of the children, especially the ones who were there for that particular day, ultimately would die. I approached a few of my Malawian colleagues who were so excited about this idea, and together we put together a project that I think we're all really proud of, as it has continued for now a few years and has impacted a lot of families.

Dr. Lidia Schapira: Talk a little bit about this idea of memories and having a photograph that helps families who are grieving keep that memory of their child so present.

Dr. Allison Silverstein: I think in general, in Western societies, within my family and my friends, pictures are such a common way to pay respects and to remember people. When I'm feeling nostalgic, I go through old pictures. I've lost all four of my grandparents and I'll look back at pictures that we took together and it just brings up a lot of memories and a lot of joy of the time that we spent together. With social media, people will post pictures of their loved ones after they die, and I think that's such an ingrained part of how we grieve and how we process during bereavement. And the idea to me that someone might not have a camera phone or a camera and therefore might not have any pictures of their loved ones when they die. That concept, when I first thought of it, very much shook me. It rattled me to my core thinking about how meaningful and important those things are for me. And it's such a small, simple thing that we absolutely take for granted.

Dr. Lidia Schapira: When we think about resources and disparities or inequities in care, we don't usually think about it at this very granular level. I'm curious to learn a little bit more about how you develop this concept and transformed an idea into really a project and then how you got the project to continue even after you left Malawi.

Dr. Allison Silverstein: It's a great question. I think in global work in general, it's really important to be intentional about surveying your community about what the needs are and not projecting from your internal opinions what those needs are. And so, of course, I took this picture, and there was this light bulb moment for me, and then I asked myself to step back and say, "Hey, is this truly meaningful? Is this truly valuable? And how can we create something that is sustainable?" 

So I asked multiple Malawian colleagues who kind of have different roles or disciplines on the team and said, "Hey, this is what I'm thinking. What do you think? What are your ideas?" And really work collaboratively, knowing I have different perspectives and resources and experiences, and we need to really make it, not me coming in and projecting those things. And so ultimately, everyone was very excited about this idea, and so we started tinkering with a design. Luckily, there was a Kodak store right next to where I got my groceries, and so I was able to print some photos very easily. 

And then in Malawi, there's something called Chitenge, which is this beautiful fabric that people will wear, and it will become different articles of clothing, and you can get yards of the fabric very inexpensively at a market. And so I took some scraps that I had and went to the pharmacy and got some cardboard boxes that were left over from prior delivery. So I was really trying to think about things that would be very low cost and repeatable and ultimately designed the first frame. After we had created this first prototype, we internally, the direct members of the team, were the ones who were making them initially, and we started training volunteers in the hospital. And ultimately, the current iteration is that guardians make their own frames, so they sit on a lawn together, and it serves as this opportunity for them to connect and share and serve as kind of a psychosocial support. 

This project, we started it towards the end of my time in Lilongwe and with COVID in March of 2020. I was not prepared to be coming back to the US. I was supposed to remain abroad for another month. And I remember getting a call saying, "You need to leave before there aren't any more flights." I said, "No, I can't. I haven't handed off this project yet." And so I met with our team. I created step-by-step instructions on how to make the frames and how to use a camera. They thankfully had a digital camera that they had used for some clinical work previously, and so got those nuts and bolts in place, and then I left. 

And it was about six months before I received a WhatsApp message from the social worker in Malawi saying, "Your dream lives on." I was at the airport. I don't remember where I was flying, and I just started crying. Because this was a project that I thought was valuable, and it was a project that I had engaged with colleagues and felt like they also thought it was valuable. But I wasn't sure until that moment that I received that message how meaningful and valuable it was perceived from the team and the families who were there.

Dr. Lidia Schapira: Such a beautiful story, and I'm so glad that you chose to write and share it with your colleagues and that we were able to give it some exposure in the journal. I wonder if you can share with our listeners what other projects you might be involved with, now, again, thinking globally.

Dr. Allison Silverstein: I am continuing to do some work with the team in Malawi and in Houston on a global scale. I did my fellowship training at University of Tennessee Health Science Center in Memphis and have done some global work with the team at St. Jude. And I’m now getting established in my new role at University of Colorado. And our pediatric palliative medicine team is exploring our ‘what's next’ in terms of being leaders within the global health world. And so a lot of little things in progress and trying to figure out what's next.

Dr. Lidia Schapira: What opportunities do you see for collaboration in the area of global health, especially global palliative medicine and oncology, the global health infrastructure?

Dr. Allison Silverstein: The global health infrastructure is rapidly evolving. Even since I finished medical school until now, I've seen changes in resources and in opportunities, and it's really inspiring to see. A lot of that focus is on those medical interventions, and I think there's a lot of opportunities to think creatively how we can support families beyond just kind of curative or palliative treatment, beyond the medications, beyond the surgery, and think from a very holistic level of involving multiple disciplines and supporting families along their whole journey.

Dr. Lidia Schapira: I wonder if during your time in Malawi and through this project of capturing the photos, framing, and then presenting them to families, you had any personal connection with members of families and if you can share with us perhaps some of their reactions or what they said to you. 

Dr. Allison Silverstein: I very much tried to be a support system for this program and not the face of this program, and so I tried to take a step back and empower my colleagues to really have an active role in the execution and the vision itself. I shared a couple of meaningful encounters in my narrative. I think one of the really special stories I have actually doesn't directly involve me, but I mentioned that I stay in close touch with a social worker in Malawi. And she recently went to a home for a bereavement visit after the passing of a child. And when they entered the home, there were three frames on the wall with pictures that they had taken while the child was alive. And seeing that picture, seeing that moment that the family had recognized the value and taken the initiative to not only accept and embrace these pictures and their frames, but to hang them in their home. That was a really special moment for me.

Dr. Lidia Schapira: It sounds like it's been a very moving experience, very meaningful for you. And I wonder if you can reflect a little bit on how this experience perhaps has changed the way you think about palliative medicine and pediatrics.

Dr. Allison Silverstein: I think I have realized how much of our role in medicine is about the little things and recognizing that the little things to me might not be little to someone else. And so taking that moment to listen and to hear a family's needs and think creatively and problem solve, no matter what they are articulating, this is something that I really try to practice both in my role in Denver and as I think of other roles that I fill and will grow into. And this project has really helped me frame some of my work in terms of those little things, as well as really enhanced my personal practice of gratitude and appreciation for the little things in my life.

Dr. Lidia Schapira: Allison, thank you so much for your words, your wisdom, and the work that you're doing. I hope you continue to be inspired and creative, and I look forward to connecting in the future.

Dr. Allison Silverstein: Thank you so much for having me today and letting me share about this project and my passions.

Dr. Lidia Schapira: Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe, so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. 

Show Notes:

 Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: 

 Dr. Allison Silverstein is an Assistant Professor at the University of Colorado School of Medicine.

See another article in the JCO Global Oncology, Art of Global Oncology section:

Yuan Fen 緣份

A doctor finds compromise with a patient for one last gamble.

TRANSCRIPT

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

[MUSIC PLAYING]

Welcome to JCO's Cancer Stories-- The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

"The Gambler," Katherine E. Reeder-Hayes.

"All he wanted was to go to Vegas. I knew Josh only at the end of his life, far into his story, after an old man's cancer had already wreaked havoc on his young body. At the age of 29 years, he lay in an intensive care unit bed, tethered to the wall and to his many medical providers by high flow oxygen tubing and intermittent and continuous positive airway pressure to deliver as much oxygen as possible to his disease swamped lungs.

His outpatient oncologist told me that like many adolescent and young adult patients with cancer, his attitude toward cancer treatment had been somewhat cavalier. He missed some appointments, declared he needed a day off on his birthday, and so on. But lately, he had been doing his best to make it to the clinic, and his oncologists had already tried two successive lines of therapy for his metastatic esophageal cancer.

On his admission, scans showed striking progression of his disease in a short period of time. My oncology consult team was called in to assist with goals of care. One of our first orders of business was to deal with the question of his code status.

As usual, I started the conversation by sharing what I had observed on his scans. My concern that his cancer was now at a point where more chemotherapy would not change its course, and my expectation that his lungs would soon become unable to take in enough oxygen, even with maximum external support. I explained that if our other best efforts failed, the only way to deliver more oxygen would be to intubate him and use a ventilator.

This conversation is usually somewhat of an art form, a gradual process that can evolve over days as I answer questions, elicit the patient's goals and values, offer emotional support, and give the patient time to think. But in this case, my powers of persuasion had barely gotten warmed up when the patient interrupted me with a stern look.

Doc, if you put me on a ventilator, am I going to die on a ventilator? I paused. This seemed to be a direct question that required a direct answer. Yes, Josh. I believe that you will. OK, there is no way that I'm going to die on a ventilator. Do not put me on one.

A couple of days into his hospital stay, as we toyed with antibiotics and tried to optimize anything fixable that might affect his breathing, while discussing whether getting him even as far as an inpatient hospice unit was feasible, we got a call from the ICU team that the patient wanted to leave. At first it seemed ludicrous. I quizzed the unfortunate fellow leading our team. Leave? He's on 80 liters per minute. What do they mean leave?

Did they make him mad or something? We sped to the bedside. The ensuing conversations were lengthy and many. Patient and palliative care team, patient and ICU team, patient and family, patient and oncology team. The upshot was pretty simple. Josh's big wish had been to go on a trip with his father.

His dad had supported him a lot through his illness, and they had grown closer than before. The initial plan was to visit Las Vegas. However, flying was now out of the question. Instead, they had planned a weekend trip to Nashville to stay at a fancy hotel and visit the honky tonks.

The trip was supposed to have taken place the week that Josh was hospitalized. After mulling it over, he had cooked up what he saw as a compromise. He would leave the hospital and drive to a casino town approximately three hours away for one last great weekend.

He informed me that he had won $1,500 betting on basketball from his hospital bed to fund the trip. And a GoFundMe page was apparently doing well. This influx of cash, in his opinion, erased the major barrier to the feasibility of his weekend plans. As far as I could discern, there was no plan for Monday.

I'd taken care of many patients near their end of life who decided to take gambles, wise and unwise, but I had never been faced with one who wanted to gamble in the literal sense. We discussed the many potential downsides to his plan. The amount of oxygen we could deliver through a portable tank was vastly less than his current need, meaning that he would rapidly become hypoxic.

He might die in the car. He might feel so bad by the time he arrived that he would not be able to enjoy it anyway. The resort was at a higher altitude, and I had little idea whether that change would worsen his oxygenation.

He might collapse in a public place, alarming strangers and traumatizing his family members. He might die alone in a hotel room. I couldn't guarantee that paramedics would honor a "do not resuscitate" form stapled to the shirt of a young, healthy looking man. I couldn't even guarantee that we had a stapler on the unit. Hospice does not, I am almost certain, serve casinos.

I called a psychologist who had worked with Josh regularly in the past, hoping for some backup from someone who had an established rapport with him. I resorted to some dramatically nonmedical language in my attempts to describe the patient's state of mind. He basically has a mental image that he wants to go over the cliff, like the last scene of Thelma and Louise. But this isn't a movie.

Patients with cancer don't die by driving off a cliff. He's going to scare some hotel manager out of their wits. He doesn't even have a plan for what to do if he makes it back.

The kindly psychologist agreed to evaluate the patient, although it is possible he may have been evaluating the oncologist as well. I began my conversations with Josh assuming that either he had not thought of these things or that he was in denial about the severity of his illness. Thinking back to our ventilator talk, however, I gradually realized that he was not, generally speaking, that sort of patient.

I began slowly to wrap my head around the fact that this patient was not afraid, at least not of the things that I feared on his behalf. It was not that he didn't believe the scenarios I presented. To him, dying on the floor of a casino after a great night out was not the worst possible scenario. Dying in a cage in our ICU, the last days of his life orchestrated by others and mimicking the death of a man three times his age, waiting around in the least fun place on earth for his time to die, that was what scared him.

The things that I would want for myself at the end of life-- quiet and calmness, being surrounded by loved ones, help to ease my physical symptoms-- were not things that would comfort him. I was not going to make him a middle-aged man in the course of three days in the ICU. And quite quickly, I began to like him for it. One has to admire the spirit of someone who can hold out against such a large team of experts telling him how he ought to die.

Slowly, with almost audible creaks from our collective old age, the team turned its focus to making the most of Josh's plan. An oxygen tank and wheelchair were procured. Several copies of a large yellow form with a "do not resuscitate" order were signed. The palliative care team provided oral morphine for air hunger. The primary oncologist and nurse urged Josh and his family to contact them immediately if he made it home so that they could mobilize hospice to keep him from returning to the hospital.

We all wished him good luck. As I pressed the button to leave the ICU on the last day of Josh's stay, a thought occurred to me. I turned and walked back into the room. Hey, Josh, there is one more thing I want to ask you.

His face took on a good humored but slightly exasperated look, the look of the teenage boy bracing himself to endure one more well-intended mom lecture. Doubtless he thought I'd come up with one more excellent reason why he should not carry out his plan. Yeah, he said.

Well, I sometimes write stories about my patients. Usually I write about people I've taken care of who taught me something important or made me think about things in a different way. And I think that one day I might want to write about you. Would that be OK with you?

He straightened up in the bed, pushing his hands under himself in the effort to be more upright. Yeah, I'd like that. But just one thing, you have to use my real name. No pseudonyms. And so I'm telling Josh's story, the story of a patient who is young enough and reckless enough to tell us all exactly how he wanted to live the rest of his life, even when his plans did not fit into his medical team's boxes.

Josh made it to the casino. He sent our fellow picture of himself surrounded by what seemed to be groupies. I'm told that he won $1,100 and bought his father a ridiculously large television. He lived for six days, long enough to return home and die comfortably with hospice care. Somewhere I sense he's laughing at me. To the end, his gambles paid off.

For our patients at the end of life, how often do we try to assign them a pseudonym, one that fits neatly into our medical boxes? And do we know how to listen when they ask us to acknowledge their real identities and to help them conclude their lives in the way that fits them, not in the way that would fit us? Perhaps we too can stand to take some risks.

I am grateful that I got in one last gamble with Josh. That, believe me, is his real name."

[MUSIC PLAYING]

With me today is Dr. Katherine Reeder-Hayes, who is an assistant professor of medicine at the University of North Carolina, and the author of "The gambler published online July 30th of 2019. Welcome Katherine.

Thank you. Thanks for asking me.

You are most welcome. You are a masterful storyteller. "The Gambler" is such an incredible story of a young man with cancer who is so determined to live the end of his life the way he wants to, on his terms. And he sounds like he taught you a powerful lesson. Tell us a little bit about Josh.

Sure. So I think Josh was challenging to me as a clinician for a reason that I think many of us identify with. I didn't know him very long. And sometimes I think, as impatient physicians, we are faced with situations where something dramatic is happening in a patient's life, and we are the provider who circumstantially needs to stand with them at that time.

But we really don't know them. And we really don't have a relationship or a prior knowledge of them to draw from. And so I really felt like I spent the first few days that I was caring for Josh really just trying to figure out who he was. And particularly, as a younger patient, I think most of us as oncologists care for midlife and elderly patients a lot. And our skill sets at caring for younger patients, particularly those of us who care for solid tumors, are maybe not as honed, or not as sharp, or it's been a little bit longer time since we were in that person's shoes.

So just by virtue of the fact that he was young and he was male, he wasn't a patient that I could necessarily put myself in his shoes or claim to be knowing where he stood, just from a demographic standpoint. But I think it's always easier in these difficult situations when they can be diffused with humor. And Josh was a very funny person. And so I think that was something that he and I had in common immediately. And I think that that initially helped to lighten a little bit what was otherwise, obviously, a very dark situation.

One of the points you make in the essay is that Josh taught you to listen more deeply. And one of the themes in the essay, and one that you just alluded to, is the fact that his youth made him so special. Can you tell us a little bit more about what you learned about listening deeply and attentively to young patients who are faced with a horrible cancer and nearing the end of their lives?

Sure. So I think as a 40-something myself, I hate to think that I am set in my ways, because I think of being set in my ways as something that describes an older person. But I think as physicians, we get set in our ways pretty quickly. There is a culture to our hospitals. There's a culture to the way that we take care of patients.

There's a power dynamic where the physician or the provider in the hospital setting is the one in charge and the patient is the one taking advice. And I think one of the things that was good and challenging about Josh is that he didn't really sign up for that. So he didn't want to do things the way things are usually done in the hospital.

And a patient who reacts like that, I think if we're at our best, makes us go back and question, well, why do we do this this way? Why do we have this rule? Why do we usually try to discharge the patient to hospice?

Well, why couldn't he leave the hospital hypoxic? What would be so-- what would be bad about that, right? And thinking through not only what we usually do, but what could we do? And so I think that was one of the things that I enjoyed about taking care of Josh was that he pushed me to think about not only the way we usually do things, but the way that things could be done. And I think that had something to do with his youth and just how flexible his mind was as a 20-something.

So let's go back to this theme of the power dynamic here that you just talked about and that also is clearly developed in your essay. You describe finding Josh sort of tethered to a wall. And then you describe to Josh what end of life looks like in a hospital and in intensive care settings and so on. And he basically rebels and begins to work on this power dynamic by saying, absolutely not. I will have none of this.

What did it take for you, as the team leader and as the professional who did not have a long standing relationship with Josh, to absorb all this? And how did you respond? What did it do to you?

So I think patients have two things on their side, or at least Josh had two things on his side in this power dynamic that were powerful. I think one of them is that the patient always has the power to refuse, right? So sometimes that's the only power patients have left to exercise is their autonomy, their ability to tell the team no, this is my body, and I'm not going to do that. And I think that's something that Josh was exercising to feel like he was regaining some control of the situation.

And for patients in extreme situations like this, they also have the power to command attention as a dying person. I think as a society and as providers, we have some respect for the immense value of those last days of life. And so I think sometimes we're more prone to listen to a patient and to their wishes and preferences when they have that persuasive argument, that these are not just any five or 10 days of my life. These are the five or 10 days of my life.

And so I think those were the things that Josh had on his side, at a point where perhaps we weren't on the same side-- although I like to think we ended up on the same side-- that were persuasive to me and to other people that we needed to think more carefully about how he wanted to do things. And whether the requests he was making really, really weren't feasible or whether we did just hadn't thought creatively enough about them.

I think Josh was lucky that you were the attending, because sometimes what I've seen colleagues do is actually sort of get-- bear down on their position. And sometimes this could even rise to a confrontation. And it seems you absorbed the message, empathized with Josh, and then worked with him to help him get his way. Is that a correct understanding of what happened?

I hope so. I hope that that's what I did. I think I was lucky in my team. And I say that to say, first of all, that I was paired with a fellow who was a very warm person, a person who is extroverted and just enjoys getting to know people. And she was, of course, younger and more of Josh's contemporary.

And I think they had a good rapport. And so that kept the tone of the team's interactions with him more friendly and warm and collegial, as opposed to I think sometimes these things can get confrontational. Although I think we should always strive to not have them be confrontational. I think the fact that Josh was just a very likable person also helped.

He was putting forth his requests in a forceful way, but he wasn't angry. He wasn't mean. He wasn't abusive to anyone who was taking care of him, even though he really had every right to be.

And so I think his own attitude and personality made it easier for things not become confrontational. And then in the background, there was Josh's primary oncologist. And she was the person that I phoned up and said, oh, you have to let me get to know this person better.

You have to tell me some background. Is he crazy? Has he been a rational decision maker in the past? Fill me in.

And she was very supportive of us trying to do, to the extent that we could, what Josh wanted. And even to accept the responsibility for if he left the hospital and traveled and then found that he urgently needed to be plugged into hospice. When he made it back to his home, if he did, that she was willing to take on the downstream consequences after he left the hospital if he needed further care. As opposed to pushing me to definitively solve the problem in the hospital as though he were a problem. So I think I was fortunate in the whole team that was around me and was connected to him as well.

So here's this young man who says to you, there is no way I'm going to die on a ventilator, and I want to gamble. And there he goes to gamble. So we have the two levels of gamble-- the gamble that this is going to work out and this young man who was in the hospital on 80 liters of oxygen is going to be able to take the trip, and then the literal gamble.

So my question to you, and something I'm sure you've thought about is, what if his gamble had not paid off? What if he had had a horrible death someplace outside of the hospital or in the casino? How did you think about that?

So I think I certainly did think about that. And I have had other patients who made decisions at the end of life that wouldn't have been my decisions, and that I was sad about. And it hasn't always worked out. And they have had deaths that I thought incorporated more suffering, either for themselves or for loved ones, than I was wishing for them.

And I think although we were able to rejoice for Josh and be so happy for him that his gamble did work out for him, and that was certainly a happy ending to this story, we didn't know that at the time we were making the decisions. And so I think that is the hard part of truly letting patients have autonomy, is that we may be able to see a future, maybe not the definite future, but a future that isn't a happy ending. And that to truly respect people's choices means being able to let them go anyway, certainly with informed consent and with making sure that they understand your concerns.

But I think that's part of listening to patients is that when we get answers we don't want to hear, if we're confident that the patient has listened to us and understands our side or our concerns about them, then we have to give them that same respect in return when they're telling us, yes, I've heard you. Yes, I understand your points. But that's not-- that's not me. That's not my decision. That's not what I want to do. And I think it's hard. It continues to be hard.

Let me go back to this idea of Josh-- Josh's youth influencing this whole process. And in what ways do you think that being very young shaped these findings and these conversations? And how would you react to a middle-aged Josh?

So I think being young made Josh courageous in a way that perhaps he wouldn't have been if he was middle-aged, in a few ways. I think even for a person who is physically very ill and has plenty of evidence that they have advanced disease, I think it is very difficult for a 20-year-old to truly imagine themselves dying. And that's appropriate in most circumstances to feel a little bit immortal when you're in your 20s.

I think that can be a bad thing if it causes people to be in denial. But I think it also imparts a kind of bravery. I think the choice that Josh made was a courageous choice. I think also by being young, many times that's the time in our life when we don't have as many ties to people who are dependent on us, right?

And part of what enabled Josh to make the choice he did, he did have some family members and he had some concern for them and their concerns and emotions, but he didn't have a spouse whom he had a commitment to and had to think about their feelings. He didn't have children who needed to be considered, whose mental health needed to be considered, their ability to say goodbye in a certain way or to witness or not witness certain things. So I think that gave him a freedom. So I think a middle-aged person might have different ties, different concerns, and also different kinds of fears about the end of their life.

So those might make the story play out differently. But I've certainly had middle-aged patients who also didn't want some of the things that we would imagine they wanted at the end of life. And that's OK too.

That's a deep reflection, and I thank you for that. How long ago did you look after Josh?

I believe we're coming up on a year.

And how long did it take you to process through it and turn it into this beautiful essay that's full of humor and respect and love for Josh, by the way?

Thank you. I would say it happens in stages. I think anytime I lose a patient in a particularly memorable or emotional or even traumatic way, there are stages. In the immediate term, I think probably the most therapeutic thing for me almost always is talking to colleagues.

And in this case, I think there was some joy and humor in the reflections with colleagues about taking care of him and about the things about him that had really stood out. I think that's one stage. Because being a writer, I often will put something on paper about an experience with a patient that's been particularly meaningful pretty quickly, I mean within weeks perhaps, but it's not usually a finished something.

I kind of jot down what really struck me, or perhaps the outline of something, or a message that I got out of that situation. And then I sort of tuck it away and then go back to it later. And I think that's sort of the process I went through with this story over the course of a few months.

That's incredibly helpful. Thank you for that. My final question is about your fellow. Was your fellow OK with how the story unfolded?

I think she is. And I don't think she would mind my saying her story and his story intersected in an interesting way in that, at the same time that we were doing this end patient consultation together, she was making some hard decisions about changes in her career planning, and in the direction that some people were pushing her to go. And that she had been encouraged to develop her career and her future plans in a certain direction, and she was coming to feel that that wasn't the right direction for her. And really needed to pull the trigger on just saying that out loud and making some changes in her plans for training so that she could get back to a place where she really felt like she was doing something that was right for her.

And so in a way, I think Josh was an inspiration in that sense to do something that is hard and may feel scary, but that ultimately is going to be true to who you are. So it was, I think, a good thing for us to all work through together in that sense.

Well, thank you, Katherine. It's always a pleasure to read your work and a real pleasure to have a chance to have this conversation.

Well, thank you so much. I really appreciate being invited. Thank you.

You're very welcome.

Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode.

JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

[MUSIC PLAYING]

Listen to ASCO’s Journal of Clinical Oncology essay, “Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports” by Dr. Victoria Wytiaz. The essay is followed by an interview with Wytiaz and host Dr. Lidia Schapira. Wytiaz shares how a shared passion for sports can foster improved physician-patient relationships and empathetic care.

TRANSCRIPT

Narrator: Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports, by Victoria Wytiaz (10.1200/JCO.22.02529).

As the holiday season approaches, my parents will still ask me to give them a list of potential gift ideas, despite the fact that I am a 32-year-old oncology fellow at the University of Michigan. Last year, that list contained a simple request for a new lanyard … specifically, a black and gold Pittsburgh Steelers lanyard to transition to upon the conclusion of the Pittsburgh Penguins

hockey season and the start of football training camps. All hospital employees must visibly display their ID badges to gain access to the facilities, and as such, a lanyard is essential. For me, it was also essential for my lanyard to serve the additional purposes of representing my passion for my hometown sports teams and sparking joy and conversation with my patients.

Since starting college, becoming a physician was my focused goal. I felt that a career in medicine would provide me with the best opportunity to use my natural scientific curiosity and ability to connect with people to do the most good. I never truly wavered in that career goal; I had seen the dedication and compassion of the oncologists who cared for beloved family members with cancer and felt a connection with their life’s work.

However, if prompted with the cocktail party question, “What would you do if you were not in medicine?,” I would be able to answer without hesitation, “I’d be a sports journalist or sideline reporter.”

As a child growing up in Pittsburgh, sporting events were family outings, background television, and oftentimes, tone-setters for the mood of the city. Early on, I learned the basic rules for the family favorites of baseball, football, and hockey. As I grew older, I sought to understand then nuances of each sport and, in doing so, found a greater depth of appreciation for them. For me, sports represented the ability of individuals to work ceaselessly toward a common goal while facing and overcoming adversity. I found myself drawn to the human side of sports, taking an interest in the origin stories of athletes and trying to grasp the depth of their mental and physical fortitude. To that end, I joined the staff of my college’s daily, student-run newspaper, writing articles and feature stories for the sports section.

On game days, I would wrap up class and head out to the field or court to pick up my press pass, watch the game, attend the press conference, and file my story by midnight. Rather than being fatiguing, I found that my sports journalism pursuits were energizing, and that I was living out two dreams, one in pursuit of a career in medicine and the other as a sports reporter.

Each level of medical training presents its own challenges. Medical school has its share, including late nights in the library studying biochemistry and the anxiety that comes with stepping onto the wards for the first time. My combined internal medicine/pediatric residency seemed at times to comprise an endless string of busy inpatient services and critical care rotations that left little time for any other diversions. The transition to hematology/oncology fellowship brought with it increased responsibility and, for me, new psychological stress. The continuity of oncological care and the ability to guide patients through their cancer journey at a time of utmost vulnerability were the primary factors that drew me to the field, but these

aspects of care also place oncologists on an emotional rollercoaster of extreme highs and lows.

The work can be all-encompassing, and as a trainee with substantial deficits in knowledge and experience, I frequently feel guilt when pursuing passions outside of oncology. I recently experienced this sense of guilt while watching a football game with friends. Around halftime, I started wondering, should I be preparing for next week’s clinic? Am I keeping up with the most recent studies? I also wonder what my patients, both real and imagined, might think if they knew their oncologist was sitting on the couch on Sunday afternoon wearing their lucky jersey. Would this be perceived as laziness, or worse, a lack of dedication to my chosen profession?

As so often happens, patients have been perhaps my greatest teachers in combating that guilt. In wearing my lanyards and inviting conversations that step outside of the world of cancer, I have learned to appreciate that just as I have different passions, so to do my patients,

and there is often overlap which further strengthens the physician-patient bond. Comments on my professional sports allegiance are often the first words spoken to me by many patients and set a comfortable tone, even if our allegiances differ. The next time I see Mrs B and her husband, I suspect that they will have a Detroit Lions lanyard for me so that I can truly be one of them. A big college football win for Ohio State will certainly put Ethan, my 20-year-old patient with sarcoma from Ohio, in a great mood, and we will spend a few minutes discussing the heroes of the game before reviewing his latest scan or mapping out the next treatment plan.

For patients, the drive to discuss something other than their diagnosis or treatment speaks to a deep desire for normalcy at a time and place that is anything but normal. As many patients notice and comment on my lanyard, I have also become more inquisitive about their outside interests which are too often buried or entirely undocumented in their medical chart. While reviewing Mr K’s records before his virtual visit for newly diagnosed testicular cancer, I saw that he drove a Zamboni at a local ice rink, so I began our visit by asking him about the process and if he was a hockey player himself. We traded names of favorite players and our respective

teams’ playoff chances. This brief interaction significantly reduced the awkwardness of a first virtual encounter and helped the rest of the visit flow easily. I sensed he was at ease, and I hope he will continue to feel the same as he continues with his treatment.

I now have a rotating assortment of lanyards to change with the sports calendar, both collegiate and professional. I love walking into a clinic examination room, seeing a patient notice the lanyard and ask if I saw the game on Sunday or agreed with the controversial call or the potential of the latest draft pick. My sports journalism career was brief but rewarding, especially when I had the opportunity to meet and connect with athletes and coaches. In some small way, I still use sports to forge bonds, now with my patients, to learn a bit about their motivations and ambitions. When I have the time, I will watch a game or read an interesting in-depth feature article because it brings me enjoyment, and I hope that my patients also take the time to focus on the things that provide joy in their lives, whether that be sports, art, music, or other pursuits. Both physicians and patients are complete, complex beings capable of harboring multiple interests that when cultivated, enrich our human experience. Recognizing a shared interest or experience with a patient can present an opportunity for an enhanced physician-patient bond, provided that this is guided by the patient’s needs and pursued on their own terms. When the love of sports in an oncology fellow from Pittsburgh happens to mirror that same love in a patient from Michigan, I feel more engaged in my work and even more capable of pursuing my primary passion of providing attentive, empathic oncological care.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and professor of Medicine at Stanford University.

Today, we're joined by Dr. Victoria Wytiaz, a second-year hematology oncology fellow at the University of Michigan. In this episode, we will be discussing her Art of Oncology article, "Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports". At the time of this recording, our guest has no disclosures.

Victoria, welcome to our podcast and thank you for joining us.

Dr. Victoria Wytiaz: Thank you very much for having me.

Dr. Lidia Schapira: It is our pleasure. I'd like to start by asking you, as an author, to tell us a little bit about your process for writing and your motivation for publishing. In other words, what inspired you to write and what led you to submit this for publication to share with colleagues?

Dr. Victoria Wytiaz: As with a lot of things for us in medicine, it was prompted by our patients. I work a lot with adolescents and young adults and find that interacting with them brings me a lot of joy. Just going through some of my conversations with patients regarding sports and even sharing them with my colleagues and bringing them joy through that. I wondered if that happens for other providers, and that's really what prompted me to want to share the story. The process of writing - I did a lot of writing as an undergrad and that's a piece of my life that I like to do. And when I can combine that with medicine and oncology, another thing that really brings me joy.

Dr. Lidia Schapira: You talk about wearing your heart around your neck and that speaks of passion and then you actually use the word passion. You have a passion for sports. Help us understand that a little bit. Where did that come from?

Dr. Victoria Wytiaz: I think a lot of it came from how I grew up and my family. Sports brought us together, both as an immediate family and our extended family, whether it was watching games or discussing games, something that we enjoyed doing together. And then it was always an easy way for me to make connections with people at all stages of my life, whether it's in medical training or outside of that. Just an easy, kind of non confrontational way to make connections with people. And then from the passion side of it, I like to see other people have passion for what they're doing. And athletes are incredibly passionate people and you can see that and sense it and you can feed off of that. So it's a natural passion for me to watch them.

Dr. Lidia Schapira: Do you play a sport?

Dr. Victoria Wytiaz: I do not. I played volleyball in high school and it was fun, but I'm more of a spectator.

Dr. Lidia Schapira: So as a spectator, the sports that you write about here are team sports. I wonder if you see some sort of a parallel between the coaches and the players in a team and the teams that provide medical care.

Dr. Victoria Wytiaz: I think that's an excellent point and I really do. And you can see it if you're watching a game and you see the coaches interacting with players. And I think the important thing is it's not always the same. The coach relationship with an individual player is different and our relationship with different members of the medical team is different based on individual personalities and roles. So I think the way that changes based on the setting can be seen in both scenarios. And especially in the oncology world, relying on our team members is so critical and everybody has a different role and feeds off of each other in a different way. I agree. That's an excellent parallel.

Dr. Lidia Schapira: We use a lot of sports metaphors anyway when we talk to patients with cancer. Tell us a little bit about how you introduce that language in your visits with patients, and if you worry, as I do sometimes, about winning and losing as ways of perhaps presenting the results or outcomes of cancer treatments to patients.

Dr. Victoria Wytiaz: We certainly do. Sports metaphors are certainly abundant. I don't love the winning and losing either. It really sets up this dichotomy of failure and success. And you're right, sports is so much wrapped up in the winning and the losing. I think really good athletes and really excellent coaches can take things away from a win or a loss and kind of phrase things differently. And I hope I do that with patients to prevent that sense of failure, both on their part and on our part, too.

Dr. Lidia Schapira: How would you describe the magic that sport seems to hold for you?

Dr. Victoria Wytiaz: That's a great question. I think that's quite crazy. You think you've seen everything and then you watch a game, you watch something on television, you see it live, which is even better, and you walk away, and it’s like “I can't believe that happened. I really can't believe that happened. I've never seen that before.” Even with my parents or my grandparents, they've watched for 70, 80 years something they've never seen before happen. It really does hold that, like you said, magic, that you don't know what the outcome will be and you don't know how you'll feel based on what occurs. It really is that sense of unknown that kind of brings you back.

Dr. Lidia Schapira: And it's the beauty of the way that these super athletes also play their sports. I can just think back just a few weeks ago to the final of the football World Cup. I'm Argentinian so o that was a big moment. But even if you're not attached to the team, that was an amazing moment to watch.

Tell us a little bit about this habit of yours of displaying lanyards that identify a particular team as a way of introducing yourself to a patient, because definitely their eyes are going to be drawn to your badge and the lanyard next to it. So tell us a little bit about that, and that's the way you actually introduce your story.

Dr. Victoria Wytiaz: When I was in medical school in Philadelphia, I noticed that a lot of providers would wear a lanyard that identified their undergraduate training. And I thought that was a really cool way to kind of know where people are coming from. We were all coming from different places. Giving like, a little sense of your hometown. It's one of the most common questions we ask our colleagues and trainers, where are you from? This was an easy way to do it. And then when I moved to Michigan, I found that there's a lot of interaction between Pittsburgh, where I'm from, and other places in the Midwest. There's a lot of back and forth. And once I started to wear my Steelers lanyard, my football team lanyard, I got a lot of comments on it. Mostly positive. I figured the seasons change in many different ways and sports seasons change too, so I'll keep a running series of lanyards  that change with the sports seasons. I noticed other people doing it and I thought it was a good way to just give a nonverbal sense of who I am and a part of me.

Dr. Lidia Schapira: Have you had any situations where patients just don't get it?

Dr. Victoria Wytiaz: I am lucky to be in a very sports-friendly city in Ann Arbor, Michigan, and in the Detroit area. I've never had anyone not get it. I've certainly had an interaction with patients where family members are in the room and we'll talk a little bit of sports and a significant other, another family member does a bit of an eye roll, “There they go again. This is going to be another five to ten minutes talking about the game.” But no, I think people appreciate something outside of that encounter that represents us, because I want to know what represents them outside of what they're seeing us in the cancer center for.

Dr. Lidia Schapira: Yeah, I interpreted it when I read it as a way of humanizing yourself as well. And if I could have a lanyard that displays books, I would definitely do that. And I've often come into a room and just talk to the patient about what they're reading, what I'm reading, and try to create rapport that way.

Tell us a little bit about the emotional side of this. I was surprised to read in your essay that you actually felt guilt on a Sunday afternoon when you were watching a football match or baseball game. And I wonder where that comes from.

Dr. Victoria Wytiaz: I think a lot of us carry guilt when we're maybe not engaging as much as we think we should and working towards patient care. And I think for me, it's perhaps where I am in training. I think as you're going through training, it didn't have any gaps. You go from undergrad to medical school to residency and fellowship, and it's always, “What do I do to get to the next step?“ It’s hard to take breaks and you just keep going. But as I was watching this particular game, it was a Sunday, I think it kind of middle of the season football game. This is a four-hour game. Is four hours better spent elsewhere for clinic next week. Are there things I should be preparing for? And I think for me, it comes from that sense of the process of training and how arduous it can be and not always used to taking breaks through that. So sometimes it can feel a little odd.

Dr. Lidia Schapira: Well, I'm sure your well-being coaches will tell you that it's very important for you to take that time away from work and to refuel or replenish your tank.

I found the essay just lovely, very easy to read, and I can identify with your passion and the growth, even as a physician, and using this passion that's out of medicine as a way of building rapport with patients. Can you talk a little bit about how you see that going forward?

Dr. Victoria Wytiaz: The way I see it going forward is that I hope, as I have patients, that I have more continuity with that that becomes even easier. And what I hope it fosters is patients bringing up their interests to me on their own. I wear my lanyard, and that's a very visible thing. So it's a very easy conversation starter to kind of speak on a humanistic level between just two people. And then I hope that over time, patients become comfortable doing that as well on their interests. First, I hope that that stays with me as I kind of progress through my career. I hope the patients feel similarly.

Dr. Lidia Schapira: What lanyard will be on your list of possible gifts for next Christmas?

Dr. Victoria Wytiaz: I have every Pittsburgh team represented. I don't have my undergrad lanyard, which is also the University of Pittsburgh. That would be a good one to have from a sports perspective. From my academic career perspective, that would be the next one. I could go very off the board with, like a niche sport, but I would be nervous if a patient had a really strong passion in that and asked me questions. So I'll stick with the ones that I feel comfortable talking about.

Dr. Lidia Schapira: And my final question is this: what is the message you want readers to take from your essay?

Dr. Victoria Wytiaz: I want readers and providers to take from it that it's okay for us to have passions outside of our work as physicians. That is certainly a passion for all of us, but it is okay to have those other passions and more often than not, something that we are passionate about or enjoy, our patients will also share in that enjoyment. I hope that they use that as a way to connect with patients on just a basic human level, which I think is so important.

Dr. Lidia Schapira: Well, Victoria, thank you so much for your essay and for creating rapport and connection through a love of sports to the readers of Art of Oncology.

Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at podcasts.ASCO.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review.

Guest Bio: Dr. Victoria Wytiaz is a second-year hematology oncology fellow at the University of Michigan.

Dr. Hayes interviews Dr. Bruce Chabner on his experience with cancer drug discovery and development, phase I trials and pharmacology.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories, The Art of Oncology, brought to you by the ASCO podcast network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of the shows, including this one, at podcast.ASCO.org. Today my guest on this podcast is Dr. Bruce Chabner. Dr. Chabner's is widely considered one, or frankly if not the father, of our understanding of the pharmacology principles of anti-neoplastic drugs.

And probably more importantly, the translation of these principles to the intelligent application of the agents we use in clinic every day. Among the many accomplishments that Dr. Chabner has had working with his mentor, Dr. Joseph Bertino at Yale, who developed the concept of high dose methotrexate leucovorin rescue, that was completely based on their preclinical understandings of the mechanism of action, and more importantly, resistance to this agent. Dr. Chabner was also instrumental in the development of paclitaxel when he was at the National Cancer Institute, and he was intimately involved in many of the early studies that led to better understanding of AIDS and the ways to treat it.

Dr. Chabner was raised in Shelbyville, Illinois, and I'm going to digress for a moment, because I've always had a very special soft spot in my own heart for Bruce Chabner. A, because of his science, but more importantly, because I was raised in Shelbyville, Indiana. Both of these towns were named after Colonel Isaac Shelby, who was a hero in both the Revolutionary War and the War of 1812. By the way, Dr. Chabner, I know you were a big student of history when you were in college, so I thought you'd like this.

Dr. Shelby became the first and then the fifth governor of Kentucky, and as a citizen he was a land surveyor. There were actually nine counties and 11 cities and towns spread around the Eastern and Midwest regions that are named after Colonel Shelby. And I don't know about you, Bruce, but I had this drilled into my brain in eighth grade history class. I had to learn all about Colonel Shelby.

Anyway, so he and I are brothers in Shelbyville. Dr. Chabner received his undergraduate degree of Yale, where again, he spent a lot of his time in the history department but also in the biology department. And then he got his medical degree at Harvard, where he stayed to complete his residency in internal medicine at the Peter Bent Brigham Hospital before it became the Brigham Women's Hospital.

In 1967, Dr. Chabner became a clinical associate in medical oncology at the National Cancer Institute, where he was, in succession, a senior investigator in the laboratory of clinical pharmacology, chief of the clinical branch of the clinical oncology program, associate director of the clinical oncology program, and then he succeeded Dr. Ben [? Stabida, ?] someone I have previously interviewed for this series, as director of the division of cancer therapy.

In 1995, after 25 years at the NCI, he moved to Boston as the chief of the division of hematology oncology and the clinical director of the Massachusetts General Hospital Center, where he is now the clinical director emeritus. Dr. Chabner has authored, I counted, over 500 peer reviewed papers. I think even more than that. By the way, his first was in 1969, a case report of shaking chills related to occult lymphoma, authored with Drs. DeVita and the [INAUDIBLE] of the [INAUDIBLE] syndrome. Bruce, that really shows how old you are.

He's been the editor of all five editions of the Principles and Practice of Cancer Chemotherapy and Biologic Response Modifiers, which I consider the bible of cancer pharmacology. And I'm looking at my fifth edition on my bookshelf right now. He's trained too many Fellows for me to name, but numerous of them have gone on to be cancer center directors, chiefs of division, department chairs, and other leaders of oncology in the world. He's won way too many awards me to go through, but he received a Karnofsky award from ASCO, and he served on the ASCO board of directors.

Dr. Chabner, welcome to our program.

Nice, that's a lot of history. It speaks to my name.

Well, that's the problem of interviewing all of you folks. It takes a long time to get through all the things you've done. It's a good problem to have, though. First, I want to start out, I understand you carry the flag rank of rear admiral. And I want to know, have you ever even been on a ship? And more importantly, did you and Dr. Shelby actually serve together in the Revolutionary War? I couldn't figure that out.

You know, I never bumped into him when I was on the battleship Shelbyville, but who knows. He seemed to be what I call a name dropper. He left his name on so many different things, and I think there's a Shelby County, Tennessee, which is Memphis. Plus I think the smallest thing that he ever created was Shelbyville, Illinois, which was even smaller than your hometown.

Yep, that's true. All right, that's the last joke I'm going to tell in this interview, but I like that connection. Anyway, so how did a guy from Shelbyville, Illinois get to Yale and then Harvard and NCI? And more importantly, what made you decide to be an oncologist? I know your father was a general practitioner, but at that time the field barely existed. What was your motivation?

Well, OK, I'll tell you a bit of a story. My mother came from Chicago and she had a brother who was pretty smart. And he went to Harvard. And he used to come down to Shelbyville because he liked the pies that she made. And we were 200 miles south, so it was a trip for a pie, but anyway we used to play chess together. And when he was a college student and I was like in fourth grade, I beat him in chess and he said, Jesus, you ought to go to an Ivy League school. So that put the idea in my mind.

And then my parents were not really happy with that. They wanted me to go to Washington University or University of Illinois, but I wanted to get away from home. It was a little bit confining to be around my parents for the rest of my life. So I applied to Yale, Harvard, and Princeton, and the deal was I could go to school if I got a scholarship. So I got a scholarship to Yale, so I went there. I was happy with that choice. I really-- it was sort of, you know, life changing, actually. Stayed on the east coast.

But I still have many good friends from my Shelbyville days. We all get together once a year to play golf and poker and tell life stories.

So I have to interject. My father told me I could go to any college in the United States as long as the tuition was the same as in-state tuition of Indiana University, which at the time was $400 a year. So I ended up going to Indiana University. So how did you--

That was such a great deal. Yeah, that was my--

How did you get into oncology?

Well, when I was at the Brigham, I got interested in cancer. There was not much going on there, but one of my residents was a guy named Jack [? Moxley, ?] who had been a part of the initial study with DeVita and others, George [? Kinellas, ?] of the mop treatment for Hodgkin's disease. And I got really interested in that. And actually during my internship my sister got an immediate stromal tumor during her pregnancy, and it turned out to be a thymoma. But cancer really intrigued me at that point.

And we all had to apply for positions at NIH as a way to get out of the draft, and I wanted to do research, so that really appealed to me. And I actually applied for cardiology and cancer, and I was interviewed by Gene Brown for cardiology, and he didn't seem very impressed. But the cancer people did like me, particularly George and Vince, who had come back there. And they were young and energetic and they had interesting ideas about combination therapy, so I ended up in oncology.

Yeah, I talked with some of the other people I've interviewed about the so-called era of the yellow berets and how that really transformed medicine, in my opinion. Because so many smart people went to the NIH to stay out of Vietnam. It's probably the only good thing that came out the Vietnamese war, as far as I can see, and especially the NCI. So when you went to the NCI, [? Harlan ?] and Frye and [? Freirach, ?] I believe, were gone. So you've already started to say, it sounds like Dr. DeVita and Dr. [? Kinellas ?] were the movers and shakers at the time. Is that fair, or?

Yeah, well they were really young. I mean, it was like working for, you know, contemporaries. There were no old people there. And Frye and [? Freirach ?] weren't that old at that time. They were in their 40s with Vince and George, who were in their mid 30s. And I was 28 years old, I guess, when I went down there. I loved it. We had laboratory opportunities, we had patients, we had people that believed that they could change the way cancer was treated. George and Vince, particularly Vince, were so energetic and so committed to the idea of changing therapy, and particularly combination therapy.

And then the other thing that made it such a great experience were the colleagues that I had in my first group of clinical Fellows. Bob Young was part of it, and I became very close friends with Bob Young. And in the same group, David Livingston was my next door neighbor, and we had interned together and been arrested together. So we had just constant stimulation from a lot of different people, all of them energetic and interested in research.

Who else was in your class besides Dr. Livingston and Young, then?

Phil Shine, who made a name for himself in toxicology and then in industry. And let's see--

He was director at the cancer center at Georgetown for a while.

Georgetown, right. Subsequently, there was just a long list of wonderful Fellows. When I came back, I actually spent two years at Yale between my NCI time and then coming back to NCI. And I had a wonderful time with Joe Bertino. He was, I think, very important to me, because he was really a great scientist. And I learned a lot about biochemistry enzyme purification and working in the lab.

And so when I came back to NCI I had sort of converted to being an anti-folate person from being interested in alkylating agents. And so I was always interested, I guess, in anti-metabolites. But that was a great anti-folate experience with Joe, high dose methotrexate. It was really his idea, not mine. But the thing I worked on was the clinical pharmacology and trying to figure out why it was so toxic to kidneys. So we actually did some really interesting experiments.

We gave high dose methotrexate to monkeys, and then when they died, we took the kidneys out and looked at them. And we were doing it because we thought we would see interesting pathology. What we saw were a bunch of yellow gravel in their tubules. And it turned out it was methotrexate, and it became obvious what was happening. The drug was precipitating in the acid urine environment. But that was sort of the beginning of the methotrexate studies.

And personally, I don't think we teach pharmacology very well anymore. What made you want to go to high dose methotrexate?

Well, interestingly, I was particularly interested in-- Joe was trying head and neck cancer. There was almost simultaneously an article from Frye and Isaac [? Jurassi ?] about adjuvant therapy of osteogenic sarcoma. And there were several interesting things about that. One is that it turned out that 12 patients weren't all patients with osteogenic sarcoma. But prognosis of those patients wasn't apparently obvious.

But there seemed to be some success with it, and there was a lot of toxicity that they didn't really know how to deal with. And so I started doing pharmacokinetic monitoring in patients that we had that were on the treatment. And then when they went into renal failure, they just didn't clear the drug. The drug was hanging around for many days and they were getting this horrible toxicity. So we got into this business of why the renal toxicity and the need for hydration and alkylization, particularly.

And so first of all, I have to tell you I blamed you for much of my first year as a Fellow, because we had to draw the blood. So there were no study coordinators. Dr. Frye would just run around at all times of day and night drawing blood on patients for getting high dose methotrexate. And I still mumble under my breath when I hear your name.

Well, you don't have to do all of that now, but you know, in those days we were trying to get a more complete profile, so we did. There was a woman there at the Farber that was doing similar work. I can't remember her name.

Sue Pittman I think, right?

Yeah, Sue Pittman. That's right, that's right, that's right. But that was certainly the introduction to the anti-folate. And then I got into a very interesting area of polyglutamation and how it changed the potency of the drug and led to retention, and it was an important determinant of response. That was quite an interesting area of research.

Were you the first to report amplification of DHFR? No, that happened in 1978. I was working on MTX at the time and we had noticed that you could select highly resistant cells in culture. But then we were interested in knowing why, and Joe and Joe Bertino had described the fact that increased dihydrofolate reductase activity was found in this circumstance. But the actual demonstration of amplification in mammalian cells was done by Bob [? Shimke ?] when Joe was on a sabbatical with him.

And they had a medical student working in the lab on that on that paper, and that was Dan [? Haber ?] actually. Who came back to--

Who is now the cancer center director [INAUDIBLE], right?

Yeah, he wrote a key paper. So we had, at the time when that came out, we got interested in that. And we stuck radiolabeled methotrexate in the culture with some tumor cells and found these odd migrating entities that turned out to be polyglutamate. So that led to the whole issue of what were polyglutamates and how did they change the biochemistry? And that was quite interesting, and then actually at the same time we saw a patient.

It was a young man who came to NIH with non-Hodgkin's lymphoma and was treated with high dose methotrexate. I can't remember. I think he had CNS involvement or something like this. We found evidence of gene amplification in this patient. So it was actually the first demonstration that gene amplification occurs in people on the drug. There are a lot of interesting things that were happening at that time.

How was translational medicine before it was called translational medicine?

That was the nice part of NIH, you know? The emphasis was on the labs working with the clinics, and particularly with physician scientists. So, you know, we were one of the few places where our Fellows were expected to work in labs in their second and third years, and they did, and we had a wonderful group of Fellows that came through. The first guy that worked on polyglutamation of MTX was Rich [? Shilske. ?]

Who is now the chief medical officer of ASCO, and many, many other accomplishments after that.

Right. But many--

Actually, I'd like to change gears for a minute, because I know you had a lot to do with the development of paclitaxel. And I always found that story interesting that, you know, it was in the bark of the Japanese yew tree, which had to do with ultimate supplies. But also the first phase one trials, which some of that was done at the Dana Farber when I was there. Can you just walk through the history of paclitaxel? I think our listeners would love to hear this.

Well, it was an accident of history. Believe me. The thing started in 1964, when a group at the research triangle, a chemist, isolated this compound from the yew tree. And they didn't actually know what it was, but it was cytotoxic. And it was an anti-mitotic, and it took him seven years to figure out the structure. So finally in 1971 a guy named Ronnie from that group published the structure. It was a ridiculously complicated structure, And nobody could synthesize it, at least at that point.

It hung around in the lab and nobody was interested in developing it, because it was such an odd molecule. It was insoluble. Nobody can put it in solution. So it really wasn't an attractive pharmaceutical. And the thing that happened was, in 1978 or 1979, we had a very hot drug that was called maitansine. And we were very eager to put this into the clinic. And it was an anti-mitotic also, and very, very potent drug.

And so Dr. DeVita asked me to personally shepherd this thing and he told me that he didn't want it to fail. And so I put it into patients and it was terrible. And I kept telling him, this is not going to work. He said, it's got to work. He was pretty persistent. Well, it didn't, and he was very disappointed. So was I. And the fact is, we had nothing else to put in the clinic at that time except for paclitaxel. So we said, oh, well, we'll try it.

And we put it in a lipid emulsion. It was like putting it in engine oil or something, but it went into the clinic in several places. Peter [? Wernick ?] did it. Einstein. I guess you guys did it at the Farber. And it was causing all sorts of hypersensitivity responses. It looked impossible. And it took about, I don't know, four or five years to get it into a regimen that was tolerable. And there had been responses. The first response was in melanoma, so we were all excited about that.

That was the usual circumstance in those days that, when you took a drug into the clinic, melanoma would be the first response. And no one else from melanoma. Everywhere was-- and so but then Peter began noticing responses in ovarian cancer. And a regimen was worked out with antihistamines so it was reasonably tolerable. And finally in 1991, which was eight years after it went into the clinic, we finally decided, well, it was time to license it to industry. There was no patent, but we did it under a co-operative research and development agreement.

And the only company that was interested in the US was Bristol-Myers. Everybody else said, this is ridiculous. Nobody wants this drug. And it was too hard to make it. You had to make it from the bark of plants and it was insoluble and it caused hypersensitivity. So they took it. And about a month afterward there was a report from M.D. Anderson saying that it was active in breast cancer. And at that point it just took off like a rocket. And, you know, tried in all sorts of different diseases. Was active in lung and bladder and-- I can't remember all the other things. Head and neck.

Anyway, it became the first billion dollar drug in the cancer drug industry. And I think, you know, there are two things that really set off industry to be interested in cancer. One was that, the fact that you could actually make money on it. And the second was the notion of targeted therapies, which was growing at that time.

So to my knowledge, this is the only time somebody at the NCI had to work with the US Forest Service and the Bureau of Land Management regarding a new drug. Can you tell that story?

Well, yes. The only place where you get the raw material for the drug was from the US Forest Service. And so Texas plants were being sort of cut and burned because they were considered scrub and not worth anything as lumber. So they were cooperating. And finally when we licensed it, Senator Ron Wyden, who's still in the Senate from Oregon, got interested in this whole thing. He said, why isn't the government making money on this license? Why did you license it to Bristol-Myers and you didn't you didn't ask for anything back?

And we said, well, you know, that's not the function of NIH. We didn't have a patent. I guess we could have asked for a slice of the pie, but we didn't because no one else wanted it. We really were trying to give it away. And he was giving us a really hard time at this hearing. And then the key thing that happened was a woman who was a forest ranger with ovarian cancer, we found this woman, and she testified to how much good it did for her. And that sort of stopped all the fuss about the license.

And we actually, it was the first drug where as part of the licensing agreement we had the chance to fix the price or agree to the price that Bristol-Myers fixed. And the government never has done that since that time. Of course, this was a circumstance where we sort of owned the information, so they had to listen to it. But they set the price at $2,000 a course. And we consider that pretty high, but it was sort of equivalent to what other drugs were costing at the time, so we let that go by. But ever since then, the price of drugs has just escalated remarkably.

I hope there are some young people listening, because this story, in my opinion, the story of trastuzumab again, I think people think that these things just happen because the system makes them. And my experience is they happen because the drug or the treatment gets a hero, gets a champion. Ultimately the science has to prove it works, but I'm sure lots of people wanted to walk from Taxol.

You know, everybody thought it was a dog. Because it was, you know, caused hypersensitivity, it wasn't all that active in the initial testing, and it was really hard to make the stuff.

Well, the same thing is true with platinum I did my residency at UT Southwestern with Donald Sullivan, who's the chair of medicine. He was a renal guy, and a patient with metastatic-- and I had gone to Indiana. So Dr. [? Einhardt ?] taught me how to give it. So I had a patient come in with widespread testicular cancer, I wanted to give him cisplatin, and Dr. Sullivan wouldn't let me do it because it would hurt his kidneys. I said, Dr. Sullivan, he's going to die if we don't do this. And he said, he'll die anyway.

And so I did it behind Dr. Sullivan's back and I got a complete response. Fortunately in those days the residents didn't have a lot of oversight so I could do what I wanted to do. There were a lot of people that thought these drugs should be shut down, and it took the courage that you guys had back at the NCI and other places to push them out.

Don Sullivan was very anti cancer chemotherapy for the rest of his life. And it was odd for me, because I actually had a relative who was on his faculty and I went down there a couple times to talk. And I always felt very uncomfortable telling him that we were accomplishing something. Because his concept of success in science was getting an RO1 in your lab.

Yeah. He finally came to terms because [? Shelfke, ?] myself, Fred [? Lemaitre, ?] and a number of us went into oncology and had been reasonably successful. And I think he decided that it was worthwhile after all. But it wasn't easy for him. We lost him a year ago. I still miss him.

Yeah, he was an amazing guy, but he really did have a hard time believing in cancer.

So the other question, I wanted to change gears a little bit, because I know just about the time you became the director of the DCT was when the AIDS epidemic was exploding in the early 1980s. That must have been a very confusing situation about who should be in charge of this at the NIH, which institute, and how you approach it. Can you give us some background on that?

Again, it was really a crazy time. Because I remember one of the first patients that was identified as having AIDS was a person admitted to the immunology branch at the NCI. Not the medicine branch or the clinical branches. It was a patient who had disseminated tuberculosis and it had no CD4 cells. And, you know, everybody said, oh my god, what is this? This is really a weird, weird circumstance. And then other people began reporting this from San Francisco and New York.

So we actually, DCT, the reason we got involved was because of Bob Gallo. Bob Gallo had discovered the HTLV1 virus, which was causing this lymphoma in T cells. And we suspected that this might be a syndrome caused by a T cell virus. So in 1981, really quite early, we convened I think the first meeting about the biology of what was called HTLV2, I think, at the time, or three. I can't remember which one it was. But at any rate, there were a cadre of people at NIH that felt that it was caused by inhaling gases or, I don't know, their various weird theories about it.

But this theory that made sense to us was that it was caused by a virus. So Sam [? Brodeur ?] was collecting samples from patients and brought them over to Gallo's lab. And of course Gallo mixed those samples with the French sample and found virus and then made a test kit for the virus, which was really a key event in beginning to control the epidemic. And because of all that work going on at NCI at the time, we were asked-- we had the only drug development system at NIH.

We were asked to, well, look, can you set up a drug development system for this? And Sam [? Brodeur ?] set up assays in infected T cells and showed that certain nucleocyte analogs could stop the virus from replicating. The first one was ADT. And his first study was, I think, was 16 patients with AIDS in which he showed that the T cell counts recovered and people didn't die. And from that point on, we were getting significant funding for doing research on treatment development. And it was it was done in conjunction with NIAID and Tony Fauci.

What Tony did is he delegated a fellow to work with us and sort of be the liaison. And the first fellow that did that was Margaret Hamburger, who became [INAUDIBLE] FDA subsequently. And, you know, subsequently, four other people from our division-- well, actually one from NGH, became directors of FDA. Ned Sharpless most recently, and then Steve Hahn, who was a Fellow in the medical oncology group at NCI.

Yeah, he's just been named.

It was, you know, an unusual breeding ground for people interested in therapeutics.

That's interesting. You know, I was a third year resident at UT Southwestern. I was at the VA in March and a young man was admitted to our service. He had been a Vietnam veteran and he had red splotches all over him, so I called a dermatologist who biopsied it. And I got a page from the pathologist and I called him back and he said, you have mislabeled the samples. And I said, what do you mean? He said, well, this says it's a 37-year-old man. This is something I've never seen before, but I looked it up and it's called Kaposi sarcoma, and that only happens in old men or people from Africa.

And I said, I don't think we mislabeled things. And I think he was probably the first man in Dallas to be diagnosed with this. Because just as the MWR and the new journal paper came out a few months after that. So again, for the young folks listening to this, and we've already hit this a couple of times, it's one or two patients that pique your interest that often change the world in terms of, gee, I wonder why that happened.

Yeah, absolutely. I mean, you know, a lot of this is an outcome of the fact that you have research people as physicians who are working with patients, and then they ask questions.

Yeah. One of the things I've carried forward, Dr. Frye used to always say, think like a scientist. Think like a doctor. And ask yourself, so what? And I know you do that, because again, you've already told us today and I've seen you do that in other places. You know, so what? Why did this happen to this patient?

Why did that happen, yeah.

What in my lab actually will change that? And you guys did that in spades, I think, 40, 50 years ago. It's pretty amazing.

Yeah. Well, I [INAUDIBLE].

[INAUDIBLE]. Go ahead. Go ahead.

No, it's really happening a lot now, you know, in terms of recognizing subsets of diseases. We used to think that non-small cell lung cancer was just one disease. Now it's 20 diseases. It's amazing, you know? It's amazing, you know, as science progresses, you begin to understand the complexity of cancer. And then therapies become meaningful.

Yes, I agree.

It's so nice. And so I wish, you know, we were curing people. But we are making a difference, and least we're understanding it a little.

I agree. Anyone who has not heard or read Bruce Johnston's ASCO presidential address should do so. Because he did point out exactly what you just said. He had a pie chart, and 10 years ago the entire pie chart was chemotherapy for metastatic non-small cell lung cancer with little or no success. And now the pie chart is well over half the patients getting some kind of targeted or immunotherapy. Yeah, it's pretty amazing.

It is quite [INAUDIBLE] for young people that are listening to this, is that there are enormous opportunities for doing even better than we did. So we just made a start in this whole thing.

OK. With that inspiring message, which I'm glad you said it, we've run out of time. Actually we come at the end of our time. But Dr. Chabner, I want to thank you on behalf of all of us who trained after you, who've learned so much from what you've done, and more importantly, the patients who have benefited from the stuff that you've contributed to the field. It's pretty remarkable and inspiring. I don't use that word too often, but it is. So thank you, and thank you for taking time today. I hope folks listen to this and say, I'm going to go back and make a difference here.

Thank you, Dan. I have enjoyed it. It's been a wonderful time in this career.

Yeah. Well, my pleasure. Until next time, thank you for listening to this JCO's Cancer Story, the Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.ASCO.org.

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Dr. Hayes interviews Dr. Lippman discuss on being one of the first translational scientists in solid tumors.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories, The Art of Oncology brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of these shows, including this one, at podcast.asco.org.

Welcome to Cancer Stories. I'm Dr. Daniel Hayes. I'm a medical oncologist and a translational researcher at the University of Michigan Rogel Cancer Center. I'm also the past president of ASCO.

I'm really privileged to be your host for a series of podcast interviews with the founders of our field. In this series of podcasts, I'm hoping I'll bring appreciation of the courage, the vision, and the scientific background among the leaders who founded our field of cancer clinical care over the last 70 years. I think that by understanding the background of how we got to what we now consider normal in oncology, we can work together towards a better future for our patients and their families during and after cancer treatment.

Today, I am privileged to have as my guest on this podcast Dr. Marc Lippman. Dr. Lippman was really instrumental in the early studies of the role of the S receptor in breast cancer. And personally, I consider him with his former colleague Dr. William McGuire the first investigators to perform what we now call, quote, "translational," end of quote, science in solid tumors.

Dr. Lippman was raised in Brooklyn. He received his undergraduate degree at Cornell where, by the way, he played on the varsity tennis team. And then he got his medical degree at Yale. He did his residency at Johns Hopkins and returned to Yale for a fellowship in endocrinology.

Somewhat surprisingly, to me at least, he served a year from 1970 to '71 as a clinical associate in the leukemia service at the National Cancer Institute while simultaneously working in the laboratory of biochemistry with Brad Thompson, with whom he published extensively. Dr. Lippman has authored nearly 500 peer-reviewed papers. He co-edits Diseases of the Breast, which is considered the Bible of breast cancer with Dr. Jay Harris and Monica Morrow and Kent Osborne. And fundamentally, he has mentored the leaders of breast cancer in the world, in my opinion. Welcome to our program.

Hello.

I have a number of questions I'd like to ask you. First of all, clearly, you took a really unusual path to being a cancer doctor. To my knowledge, you actually never formally trained in oncology. Can you tell our audience how you went from being an endocrinology Fellow to being an oncologist?

I think it's worth it, from my vantage point, to give a little background about me. I came from very, very intellectually rich family. And there was never any question that I was going to do some kind of science. I was certain that that's where I was headed.

And when I was in medical school, I think it's important that while everybody was doing research at the school like Yale, a lot of medicine as we now think of it as evidence-based was completely mysterious. In those days, when I was starting medical school, really, I think the only fully scientific field was infectious disease because we had Cox postulates. And we knew what drugs killed what bugs. And we knew what bugs caused what diseases, for the most part. And that was wonderful.

But endocrinology, at that time, was completely functional assays. It was completely not scientific. You looked to see if the rabbit ovulated or something like that for a bio assays. And Nobel Prize winning research was done, which developed the radio immuno and the radio receptor assay. And that completely transformed endocrinology over night.

And within about one year, virtually every endocrine disease, the pathophysiology of Addison's, thyroid disease, you name it was worked out based on being able to measure minuscule amounts of hormones. And to me, this was fabulous. I was going to be an endocrinologist. I had no doubt about it. This was real science. And I could get into it.

When I was in medical school, you had to do a thesis. And for reasons that I'm not even sure of now, I can recall, I got involved with a guy who was a hematologist. But he did work on leukemia. And I enjoyed that work greatly. It was very interesting.

And right about then, you may recall, there was a minor episode going on called Vietnam. And many physicians or people who were about to become physicians, myself included, weren't very anxious to go to Vietnam. And one of the main alternative routes was to become an officer in the public health service at the NIH and to do your military service at the NIH. And that seemed like exactly what I wanted to do.

It was a very unusual process. People at the NIH picked you for their own personal lab. And because I had been working in this hematology lab, a scientist, an administrator actually at the NCI invited me to join his lab, Saul Perry. And I took him up on that because that seemed like my only alternative.

But after I finished my internship and residency and showed up at the NIH, because I was part of Saul Perry's group which was the leukemia service, I had to spend a year on the wards taking care of extremely sick people, most of whom died during that year. But because of my love of endocrinology, I kept studying all kinds of stuff around endocrinology, took the molecular endocrinology courses. And then I met this wonderful mentor, Brad Thompson.

And my first project with him actually was an attempt to combine leukemia and endocrinology. And I started measuring glucocorticoid receptors in leukemia. And that's, frankly, some of the best work I ever did. We showed that they existed, that they were receptors, and that they predicted response. I mean, we did in leukemia what people were doing in breast cancer, and I thought that was pretty interesting. And there was always this tension in my mind between the science of endocrinology and the almost complete lack thereof, at that time, in oncology.

And I thought that I might try to think about putting them together. But I needed to do formal endocrine training. So after I finished my clinical year at the NIH and my two years in the laboratory with Brad Thompson, I went back to Yale to do endocrinology. And I thought that's where I would complete my career.

After I'd been there about a year, Paul Carbone called me up and said, would I like to come back to the NCI and join the breast cancer service? And I have to tell you candidly, I had never treated a case in breast cancer in my life when I went to join the breast cancer program at the NCI. And I completely learned everything I learned about breast cancer absolutely on the fly.

So what made Dr. Carbone call you to do breast cancer?

Well, I'm not absolutely certain. I had done well at the NCI. I'd been very interested in a lot of things. And I'm not certain I can remember anymore. I don't remember why Paul called me, but he did.

And at that time, I had been looking at several endocrine jobs at a variety of institutions, including University of Chicago. And I was thinking I'd just spend my life as an endocrinologist. But I thought this was such a great opportunity to pursue my research that I decided to take my chances.

I was extremely full of myself in those days. And I didn't see the problem that I had never treated breast cancer. I know it sounds dumb to say it. But I actually said, well, OK, I'll figure this out. How hard can it be? And I guess I didn't find it all that hard.

And at that time, because I had already gotten into what I would refer to as molecular endocrinology, half of which was steroid-hormone action, I was highly familiar with the work of Elwood Jensen, who was the real pioneer at that time, one of two actually. So naturally, it made sense to me to take the work I'd already done in glucocorticoid receptors and try to make models in tissue culture for how breast cancer responded to hormones, the kind of thing you would never suggest that a newly minted faculty member try a completely insane project, which I was extremely fortunate that it succeeded.

You refer to Elwood Jensen. Tell us more about Dr. Jensen and what he did that got you where you were.

Well, Elwood was a tremendous scientist and basically a chemist. And people don't understand how technology sometimes makes a field possible. And just as I mentioned before, radio immuno and radio receptor assay made the entire field of endocrinology and now so many other subspecialties of medicine possible as you measure pulmonary and GI and cardiac hormones, in the same exact sense, what Elwood succeeded in making was radiolabeled steroids. And you can't do receptor assays unless you have high specific activity compounds.

We don't use radio isotopes touch so much anymore, and people don't appreciate that. But there was absolutely no way to measure the binding in picomolar and centimolar ranges without high specific activity steroids. And Elwood was able to manufacture created hexestrol, which is a similar compound to estradiol. And with that, he was able to basically separate bounds from free hormone and prove the existence of receptors. It was extremely important studies that he did at the time. And it opened up the entire field of hormone dependency in breast cancer, which, up until that time, had been based entirely on clinical criteria for response.

And furthermore, what occurred almost simultaneously with that was finally the invention of some serious drugs that could interfere with hormone action, most notably tamoxifen but several others that were synthesized at the time. And so rather than just having to oblate organs or use very toxic super pharmacological doses of steroids to treat patients with breast cancer, there was now a readily obtainable and usable oral therapy. And so there was a tremendous need to figure out how and why it worked. And a lot of people got into that field relatively rapidly. Bill McGuire being among them. James [? Whitless ?] being among them, myself for sure.

And all of us felt that this was an extremely important aspect. There was the clinical aspect, which became clear in the early '70s that there was, as you would expect, a very, very nice correlation between the presence of receptors and response. And that led up to the entire opening of this field of now that you could measure these receptors of how they worked, where they bound, what they did, what genes they induced. And so that became a lifetime exercise for many.

My impression is that before about 1970, endocrine therapy, which dated back the 1890s, was mostly done by the surgeons. Did you have to muscle your way into that field? Or were they openly agreeable that some guy who had never even did oncology would start treating breast cancer patients?

Well, I think that what was going on then, in England, there was a much greater delay in medical oncology as a field. And these patients were still treated by surgeons and radiation oncologists. I don't think there was any parallel issue in the United States. There were some very wonderful pioneering surgeons, but they didn't, I think, pretend to fundamentally want to get into molecular endocrinology. I don't recall that as being an area of conflict in terms of doing these kinds of studies.

And of course, in this country, we were unbelievably blessed by the extraordinary, absolutely extraordinary pioneering and organizational skills of Bernie Fisher, tremendous scientist, in his own right, a tremendous surgeon, but, even more importantly, the ability to really form the most effective, ragtag, co-operative group the NSABP, which was able, from its very inception, to do some of the most groundbreaking studies not just around hormone therapy, which they certainly did, but obviously as we all know about, differences in surgical care. And so--

You eluded to Dr. Carbone. My impression is the NCI, mostly, in those days, was all about leukemia and lymphoma, the so-called gang of five, MOPP and CHOP and Doctors Frei and [INAUDIBLE]. Who was behind you to move out and start taking care of patients with cancer in a more scientific basis? Was it just Carbone or were there other people at the NCI who [INTERPOSING VOICES]

Well, shortly after I got, there Paul left. He went to Wisconsin. And Doug Tormey, who had been nominally head of the breast group, departed. And so I was suddenly given an empty stage and said, well, why don't you do it? So within two years, I was running a program in which, the previous year, I hadn't even treated a patient. It was extraordinary.

But right about that--

I was-- that's a very good question and a slightly personal one.

About 30.

About 30, 31.

Yeah. Most 30-year-olds now are just starting their residency or their fellowship.

Right. And it is unfortunate that people with the most energy and most intelligence get increasingly pushed downstream. I mean, the age of first RO1s in this country is horrible, as we all know. And that's a major other problem that people need to address. But at that time, as you may recall, several groups were developing the first multi drug combinations for breast cancers. CMF, or as Johnny [INAUDIBLE] used to refer to it as CMF, and of course other variations with the MD Anderson regimens of so-called FAC chemotherapy, F-A-C, and other regimens that included vinca and prednisone. And so for the first time, reasonably active regimens were available for metastatic disease.

Where in the past, it had only been a handful of single agents, vinca, methotrexate, 5-FU. And at the same time, I think there were the extraordinary, a little bit later, the extraordinary first data that adjuvant therapy was successful. I mean, the studies done by the NSABP initially was single agents and then the CMF studies from Milan were extraordinary. I mean, breast cancer was and remains the most tractable of the solid tumors with the possible exception of testicular that we've treated in this country or anywhere.

Tell us about your lab work and how you established what you did, and then really interested in how you looked at what you were doing in the lab and said, jeez, this relates to my clinical work.

Well, thank you. As I said, when I had been working at Yale before I came back to the NCI. And at that point, at Yale, I was trying to develop models of gluconeogenesis in liver cells. It had nothing to do with cancer.

And so I arrived at the NCI, recruited by Paul, offered some laboratory space, and said, go to it. And I literally, literally scratched my head and said, well, what am I going to do now? And because I hadn't had a previous thing I was just going to expand on.

And because another great miracle that had been growing from very late '50s to the mid '60s was cell culture. I don't think people can now imagine how pioneering the results were to grow cancer cells and to get them to reflect, in any sense, the phenotype of human malignancy. I mean, now we take it for granted. But these were pioneers trying to figure out how to grow cells, Harry Eagle and Hamm and Dulbecco, and all of these other wonderful people.

So anyway, it seemed to me, wouldn't it be great, since someone had described a cell line that had estrogen receptor, I said to myself, what would be more straightforward than to figure out how you could manipulate these breast cancer cells with hormone therapies and figure out the mechanisms by using cell culture as a model for steroid hormone action? So I set about doing that. And after about six months, I succeeded.

And that was the good news. And ironically, the better news was that nobody else could reproduce it, including Dale McGuire. And lots of people said this was, frankly, garbage, that I was making it up. And so when eventually-- no. It was very upsetting. I don't think many people when they first start off and they have their first big set of papers, and I published this stuff in Nature and serious journals. And all of a sudden, everybody says, it's not true.

I remember giving a lecture at Harvard. And somebody at the end at the questions said, we just can't reproduce this data. We don't think you're telling the truth. I mean, how often you want to have that happen in your career? And as I said, what turned out to be very fortuitous was that we were right. And so eventually, that made things even easier for me in terms of my career. There's no question about that.

And a lot of people wanted to go to the NIH. I think it's now with so many wonderful-- what are there more than three dozen comprehensive cancer centers? But the United States in those days, there were just a handful. And most of them were doing leukemia and lymphoma, like Stanford, which certainly had almost no breast cancer program at the time.

And so people who wanted to work in breast cancer came to work with me. And lots of people wanted to get a BTA degree, Been to America. So I was fortunate to have some very outstanding people from Europe and Asia come to participate in my work.

And there was still the tail end of Vietnam. So some of the very best and brightest, if I could misuse that expression, people like Neil Rosen and Ed Gellman and Doug Yee and George Wilding, people who all became cancer center directors were people that I was very fortunate to have work with me. And I was pleasured to deal with them.

When did you say you were doing the lab models of cell lines and discovering how ER mediated the effects of estrogen? When did you start saying, let's take this over to the clinic? I mean, what was the first thing you did that you translated into the clinic?

Well, the first translational study I did when I was a fellow when I tried to do correlations of response to glucocorticoids in leukemic patients and ALL and AML. So I mean, I was used to going back and forth that kind of way. And we did a series of drug trials in breast cancer patients. I was seeing patients.

I haven't spoken much about it. But I don't know how to say that any other way whether it sounds modest or not. I simply love being a physician. I found that the main appeal of oncology was dealing with people at times of enormous obvious stress and disturbance in their lives. And I found that that brought out some of my best skill sets. And so I was anxious. I was always involved with patients like that.

One of the main trials that we got involved with involved Allen Lichter because Allen and I were endlessly discussing what was the right therapy for localized breast cancer. You may recall that Sam Hellman, the joint center, refused to be part of clinical trials looking at lumpectomy and radiation, as he was convinced, turns out correctly, that that was equivalent to doing mastectomy. And we felt, Allen and I, I think somewhat maybe arrogantly again, that we could do a single institution trial for lumpectomy versus radiation.

And we did. We ran a randomized trial of about 350 women at the NCI, a prospective randomized trial of lumpectomy and radiation versus chemotherapy. And of course, all of these patients became fodder for advanced disease trials and everything else we were doing. And those are some of the happiest days of my life working with Alan side by side in what may have been the first multidisciplinary clinic in breast cancer.

If I may, I'm going to interject. Allen Lichter, who started the department of radiation oncology at the University of Michigan, where I'm sitting right now, was my dean when I arrived here, became ASCO president at one point, and then was the ASCO CEO for years. Since this is an ASCO publication, if you will, I'd give him credit for all of that.

And well he deserves it. Well he deserves it.

Yeah. I can't agree more with that. That's for sure. The other thing I've heard you-- by the way, I've always wondered. How did you get 350 patients onto that trial at the NCI, since you've tended not to see walk in the door kind of breast cancer patients, right? So how did you?

Well, the NCI remember, everybody was treated free. So fortunately or unfortunately, given American medical economics, people who had a diagnosis would come to see us because they had no other option. We would pay all their travel and everything else. So we treated patients. And I have to tell you, up until last year when she died, I still had patients from that study who had followed me around the country to be treated.

That's a great story.

It's true. It's absolutely true.

So the other thing I've heard you talk about, and I think people should-- given the proliferation of medical journals now, there's one on every corner, I've heard you talk about the fact that you really have a hard time finding places to present your endocrine results, that the Endocrine Society didn't care about cancer. And AACR didn't care about endocrinology. ASCO didn't really exist almost in those days. Give us some stories about that.

Well, that's completely true. It's completely true. There was always a session in the Endocrine Society called cancer and hormones, which was late on Friday afternoon. And everybody had gone home. And AACR had the same thing. Because at that time, there just wasn't an obvious niche for cancer.

What began to make it more popular to both societies were when things like, quote, "growth factors," close quote, became more in evidence. And they clearly played a role in cancer. But clinical trials and clinical experience had no role in the Endocrine Society. And basically studies in molecular oncology just didn't seem all that attractive to AACR.

It wasn't like you couldn't talk about it. It just wasn't front and center what people were interested in. Everything goes through vogues periods. We're now going through an immunooncology voguish period. And I'm not trying to suggest that that's not extremely important and going to have endless value for people. But now, if you're doing almost anything else, you can't even write a protocol. It's true. It's true in some ways.

I was trained. [INAUDIBLE], who's an endocrinologist, was at the Dana Farber and told me that cancer is just endocrinology gone wild. In fact, I believe, in many respects, that's what precision medicine is all about is that we begun to take what you guys did 50 years ago and said, let's do it for all the diseases other than immunology, which is a different issue. I agree with you.

I think that that's a good point. I think that one of the fundamental differences between normal and cancer, however, is genomic elasticity. If you had psoriasis, and I put you on methotrexate. Then 10 years later, I doubled the dose, it would kill you. Because you never amplify the target gene, dihydrofolate reductase. And you remain sensitive throughout your entire life. Whereas doing that with a leukemic cell, in a couple of months, you'd be completely resistant.

And that is, in my mind, one of the shortcomings of so-called precision medicine in which you're trying to match a pathway, an oncogene, to a specific therapy. In that, oftentimes, these studies are in end stage patients with multiple resistant clones now has become endlessly clear from single cell sequencing studies. And I think that there is, I think, personally, slightly less to most efforts in precision medicine than most people think.

And I believe that it's amusing that precision medicine has come to include immunooncology, which has little, in my mind, to do with the initial way in which precision medicine was touted, which is find the oncogene. And we will give you the drug. And I think, by and large, that, except for some incredible successes like Gleevec for CML, hasn't really panned out.

Personally, I think what we're going to do is head back to what doctors Hall and Frei and [INAUDIBLE] taught us, which is that resistance is a heterogeneous issue, and we need to combine drugs. We just need to do it more thoughtfully than perhaps we've been doing in the past.

Couldn't agree more.

I want to change the paths for just a moment. To my knowledge, you are one of the few and maybe you were the first oncologist who's been both a cancer center director at Georgetown's Lombardi Cancer Center but also a chair of medicine. You've been at two major academic centers, here at the University of Michigan and University of Miami. Why do you think there have been so few oncologists who have been chiefs of medicine, chairs of medicine?

Well, your personal favorite institution, UT Southwestern, would be an example as well of a chair of medicine who's an oncologist.

Right.

But no particular reason comes to mind. I think that the skill sets and interests of a chair of medicine, at least as it used to be, up until maybe about 10 years ago, were someone who actually wanted to, A, have somewhat less of a research footprint, which would discourage some people, and something less of the same focus on curing a specific disease, which would certainly describe a cancer center director. And I think that exactly explains some of my clinical interest in becoming a chair of medicine at Michigan.

I went there, there are always push and pull reasons. The push reasons were that Georgetown was economically a disaster. And they had sold both the hospital and the clinical practice to a large non-profit community-based hospital. And I thought that would be, more or less, the end of the cancer center as I knew it in. And unfortunately, that prediction turned out to be, in many ways, correct.

So there was push issues. I just didn't want to officiate over the deconstruction of the cancer center that I had helped to build. And in addition, I felt clinically, I was raised in the era of great chairs of medicine. I was raised in the era of Don Seldon and Dan Foster and A. Magee Harvey, and people who knew everything and would teach at the bedside and knew everything about disease.

And frankly, I felt that breast cancer clinically, not emotionally and not from a research point of view, but clinically is relatively straightforward and not that complicated. And I wouldn't say I was bored. But I was looking for a new challenge. And I thought the notion of really trying to bring other areas to bear in terms of my research would be fun. And so I was thrilled to be chair of medicine. But I don't think that's necessarily the career path that many oncologists or any other subspecialist would want.

Which did you enjoy most, being cancer center director or being chair of medicine?

Unquestionably, being cancer center director here at Georgetown. It was the thrill of a lifetime. When I came here, there were three people in the division of hematology, oncology. Two of them immediately left.

And by the time I moved to Michigan, the Department of Oncology that I had created had more faculty than all of the basic science departments at Georgetown combined and more research money than all of the basic science departments at Georgetown combined. It was tremendously happy, very successful. And I felt we were doing really wonderful things. It was just a fantastic time, just like that, which is one of the reasons why I've come back.

And I was going to say, although Georgetown did fall on hard times. My opinion is grown back into a major institution. And I'm sure they're happy to have you back. So we're running out of time. I really just touched the surface of many of your contributions.

In addition to your scientific contributions, you really touched on it. You've been one of the most prolific mentors in our field in my opinion. I looked over your CV. I count at least six cancer center directors. I think five, four PIs and probably hundreds of others who are proud to have been under your watchful training eye, by the way, including myself, in our careers.

So of all the things you've done, your science, your administration, your mentoring, we've touched on all three of those. How do you want people to remember Mark Lippman when it's all said and done?

So there's a wonderful joke about that. These three guys are standing around saying what would they like to hear said around their coffin when they're dead. And one guy was a teacher, and he says, you know, I'd like them to remember what a wonderful teacher I was, how I helped people.

And another guy's a physician, and I'd like to hear if I'm lying in my coffin, them say, what a wonderful physician. He did everything for his patients. The third guy says, what I'd like to hear is, look, he's moving.

So it's hard to-- right. I am certain that the place that I feel most happy, it's not even a close call, is the ability to have played an important role in helping people's careers succeed. I mean, I'm something of a tough guy. But I have been, I feel, very willing to see people grow up and leave the nest and keep them nurtured and look after them for many additional years in their career and enjoy those relationships. It's incredibly enriching.

Well, I also have to say there are hundreds of thousands, if not millions of women who have benefited from the contributions you and your colleagues made 50 years ago at the NCI and since then. I've tried to make it clear through all these podcasts how much we owe all of you for what you've done and where we are now. And the reason we're doing this is so people don't forget about those things as we move into medical economics and some of the other things that I think are less fun.

So it's time to conclude here. I want to thank you for taking your time. And again, thank you for all you've done for the field, for those of us who've trained with you, and again, mostly for our patients. And I hope you've enjoyed this conversation as much as I have.

Very much, Dan. Thanks for including me in this podcast.

Until next time, thank you for listening to this JCO's Cancer Stories, The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or a review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe, so you never miss an episode. JCO's Cancer Stories, The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

Listen to ASCO’s Journal of Clinical Oncology essay, “When the Future Is Not Now,” by Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin. The essay is followed by an interview with Retseck and host Dr. Lidia Schapira. Drawing on cultural history, Retseck explores a dying cancer patient’s persistent optimism.

TRANSCRIPT

Narrator: When the Future Is Not Now, by Janet Retseck, MD, PhD 

 The most optimistic patient I have ever met died a few years ago of lung cancer. From the beginning, Mr L was confident that he would do well, enthusiastically telling me, “I’ll do great!” As chemoradiation for his stage III lung cancer commenced, he did do well. Until he got COVID.

And then reacted to the chemotherapy. And then was admitted with pneumonia. And then c. difficile diarrhea. And then c. diff again. But whenever we checked in with him, he reported, “I’m doing great!” He could not wait to return to treatment, informing me, “We’re going to lick this, Doc!” Of course I asked him if he wanted to know prognosis, and of course he said no, because he was going to do great. He trusted that his radiation oncologist and I would be giving him the absolute best treatment for his cancer, and we did. In the end, weak and worn out and in pain, with cancer in his lungs and lymph nodes and liver and even growing through his skin, he knew he was not doing great. But he remained thankful, because we had done our best for him. Our best just wasn’t enough.

While it can overlap with hope, optimism involves a general expectation of a good future, whereas hope is a specific desire or wish for a positive outcome. Research has shown that for patients with cancer, maintaining optimism or hope can lead to better quality of life.1,2 As an oncologist, I am in favor of anything that helps my patients live longer and better, but sometimes I also wonder if there is any real cause for optimism, because the odds of living at all with advanced cancer are just so bad. From 2013 to 2019, the 5-year relative survival rate for people with stage III lung cancer was 28%. For stage IV disease, it was just 7%.3 Immunotherapy and targeted treatments have improved outcomes somewhat, but the chances for most patients of living more than a couple of years after being diagnosed remain low. Even with our best treatments, there seems to be more reason for despair than optimism. Yet here was my patient and his persistent optimism, his faith in treatment to give him a good future, and my hope that he was right, even when I knew he was probably wrong. What drives this belief in a good future, a better future, in the face of such a rotten present? Optimism as a word and a philosophy emerged in the 18th century in the work of German thinker Gottfried Wilhelm Leibniz. As it was for my patient, optimism served as a way to negotiate the problem of human suffering.

 Attempting to explain how a perfect, omniscient, and loving God could allow so much suffering, imperfection, and evil, Leibniz argued that God has already considered all possibilities and that this world is the best of all possible worlds. Leibniz did not mean that this world is some sort of a utopia; rather, the God-given freedom to choose to do good or evil, and even our vulnerable aging bodies, are good in themselves.4 If my patient were Leibniz, his optimism about his cancer could be explained by an acceptance that everything happens for a reason, his suffering somehow part of a larger whole, selected by God as the best possible way to the greatest good. 

But while Mr L did take his diagnosis and various complications in stride, a belief that it was all for the best did not seem to be at the core of his optimism. Nor, in the end, did he reject his optimism, as the French philosopher Voltaire would have him do. Voltaire famously skewered Leibniz’s optimism in his 1759 novel Candide, in which Candide, having been raised on Leibniz’ philosophy, is kicked out into the cold, cruel world, where not just he, but everyone around him, suffers horribly and unremittingly, such that at one point, he cries, “If this is the best of all possible worlds, what must the others be like?”

Whatever Voltaire’s satire in favor of empirical knowledge and reason did to Leibniz’s philosophy, it did not kill optimism itself. Scientific optimism, in the form of progressivism, the idea that science and our future could only get better and better, flourished in the nineteenth century. Certainly, life for many did improve with scientific advancements in everything from medicine to telephones to airplanes. With this brightness, though, came a deepening shadow, a tension heightened by the experience of chemical warfare and shellshock in World War I.

Instead of better living through chemistry, science provided the means for horrifically more efficient death. The assimilation of science to the service of evil soon culminated in the vile spread of eugenics, racism, and mass murder. Like Candide, pretty much everyone in the 21st century must be wondering if we do not live in the worst of all possible worlds. And yet, when it came down to it, what else could my patient hold onto if not optimism that science would save his life? As I continued to reflect on Mr L’s response to his illness, I realized that I had unconsciously already stumbled on Mr L’s type of optimism, or rather its popular culture archetype.

One day, when he was getting his chemotherapy in an isolation room due to his recent COVID infection, I passed by the glass window. I waved, and he waved back. Then, I put my hand up to the glass, fingers separated in the Vulcan salute. He laughed, and waved again. The scene, for non-Star Trek fans, is from the movie The Wrath of Khan. The Vulcan, Spock, too is in glass-walled isolation, dying of radiation poisoning, after having sacrificed himself to save the ship and its crew. He and Captain Kirk connect through the glass with the Vulcan salute, as Spock tells his friend, “Live long, and prosper.” Later, Mr L told me that he had never been able to do the Vulcan salute and that he was not especially a Star Trek fan, though he had watched it years ago with his kids. But he loved this private joke we had, flashing this sign to me whenever we met, laughing when he could not make his fingers part properly.

Star Trek epitomizes optimism for the future, arising as it did in the context of the Space Race to the Moon. Set in the 23^rd century, Star Trek reveals that humans have finally learned the error of their ways: nuclear warfare, racism, and poverty are all things of the past, as are most diseases, ameliorated by the advance of science. In the world of Star Trek, medicine is, if not easy, then at least almost always successful. In one episode, the ship’s doctor, McCoy, and Spock whip up an antidote to a deadly aging virus. Later, slung back to 1980s San Francisco in Star Trek: Voyage Home, McCoy, aghast at “medieval” 20th-century medicine, gives an elderly woman on dialysis a pill that allows her to grow a new kidney. In the world of Star Trek, cancer, of course, has been cured long ago. My patient’s optimism is realized here, in a future that regards 20th-century science as “hardly far ahead of stone knives and bear skins,” as Spock complains in another episode. Star Trek remains popular because, in spite of everything, there endures a deep desire for, if not the best, then at least a better possible world.

I’m an oncologist, not a Vulcan, and when it became clear that Mr L was not going to “live long and prosper,” I was frustrated and disappointed. His optimism could no longer sustain my hope. We were not in the idealized world of Star Trek, and I could not heal him with science and technology. Whatever the future of medicine might hold, our best possible treatments were still just “stone knives and bearskins.” Optimism, whether his, mine, or that of science, would not save him. The only optimism that seemed warranted was not for the future, but in the future.

At the family meeting to discuss hospice, Mr L sat in a wheelchair, weak and thin, on oxygen, wrapped in a warm blanket. As his family slowly came to realize that their time with him and all that he was to them—father, husband, bedrock—was moving into the past, he seemed to shift from a focus on the future to the reality of now. Gathering his strength, he dismissed their concerns about what his loss would mean to them with a sweep of his arm. Tearful, but not despairing, he instructed his children to support their mother and each other after he was gone. At the end, Mr L’s optimism became not about his future, but theirs. His wish was for them to embrace living their own best lives as they entered this new, not better, future, a future without him.

A few days later, I visited him in his hospital room while he was waiting to go home with hospice care. He was dozing in the bed, and I hated to wake him. Then he opened his eyes and smiled. We chatted for a bit, but he tired easily. As I prepared to leave, I tried to give him the Vulcan salute one last time. He shook his head and opened his arms. “Give me a hug!” he said. And I did.

I would like to thank Mr L’s family and the Moving Pens writing group at the Medical College of Wisconsin for their invaluable support.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. With me today is Dr. Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin and the author of “When the Future is Not Now.” 

Dr. Retseck has no disclosures.  

Welcome to the show, Janet. 

Dr. Janet Retseck: Well, thank you. Thank you for inviting me.

Dr. Lidia Schapira: It's our pleasure to have you on. I like to start the conversation by asking authors what is on their night table or if they have a good recommendation for our listeners and colleagues. 

Dr. Janet Retseck: Well, I usually read three books at a time—one book of short stories, one book of nonfiction, and one novel. And right now I'm reading Elizabeth Hand's book of short stories, Last Summer at Mars Hill. I am reading Dr. Rachel Remens' Kitchen Table Wisdom because I work with The Healer's Art, and I found this book misplaced, and I thought, "Oh, my, I should read that." And I'm reading a novel called The Donut Legion by Joe Landsdale. And I bought this because I liked the title, and I am very hopeful that it involves a group of people using donuts to fight evil.

 Dr. Lidia Schapira: How interesting. I look forward to listening and hearing more about that.  

Let me start by asking a little bit about your motivation for writing this essay. I mean, we often write to process difficult experiences, and then what leads many authors to want to share it and publish it is that there is a message or that something was particularly impactful. And I was struck by the fact that you start by sharing with us that you took care of Mr. L, the patient, and the story some time ago, several years ago. So what about Mr. L sort of left a deep impression with you, and if there is one, what is the message and what drove you to write this story?

Dr. Janet Retseck: Mr. L and I connected right away when he came to my clinic. At that time, he did have a curable lung cancer, but everything that could go wrong did go wrong. Yet he had a dispositional optimism. He always told us, no matter what was going on, "I'm doing great,” just like that. When he died, I had a lot of grief around that. And at that time, I thought I would perhaps write about that grief and whether I had any right to that grief. And so I opened up a software that allows mind mapping, and I just looked at it last night in preparation for this interview. And on one side, it has all the things that I cared about and connected with Mr. L, and on the other, there's this bright purple line going with big letters "Do Better." 

Then I reflected again on our connection with the Vulcan “Live long and prosper,” and how ironic it was that that's what one of our connections was. And yet he was not living long and prospering, and nothing about that over-the-top optimism of Star Trek had happened at all with all the medicine that I was able to give him. And that's where it came together. 

Dr. Lidia Schapira: Let's talk a little bit about that Vulcan salute. My digging around a little bit led me to understand that it was Leonard Nimoy who introduced that and that it's really a representation of a Hebrew letter, Shin. So how did you and Mr. L come up with a Vulcan salute? What did it mean to you? It's very moving how you tell us about it and what it symbolized. And so I just want to give you a chance to tell our listeners a little bit more about that.

Dr. Janet Retseck: Well, there was a point during his chemoradiation when Mr. L developed the COVID infection, and radiation oncology wanted to continue with radiation, and he wanted to continue with chemotherapy. And everything we knew at the time, we felt it would be safe to do so because it's a pretty low dose. It's just radio-sensitizing. But anyone getting chemotherapy in our infusion center had to be in an isolation room. And this has a glass window. And I was walking past, and I saw him in there, and I kind of goofed around with him. The scene from the movie Wrath of Khan came to me, where Spock is in an isolation room, and Kirk connects with him through the glass. Spock is dying, and Kirk doesn't want him to die, and they give the Vulcan salute to each other through the glass. And of course, he couldn't quite do it. He knew what I was doing. He watched Star Trek in the past, but he wasn't especially a fan. But after that, that was our thing. Whenever he came in, he was trying, he was struggling to push his fingers apart. That was one of the ways we just connected with each other, to signal our affection for each other.

Dr. Lidia Schapira: There is a lot of affection here. When I finished reading it, I read it several times, but I just thought the word "love" came to mind. There's so much love we feel for patients. We often don't quite say the word because we have these weird associations with love as something that's forbidden, but that's what this feels like, and that's the origin for our grief. I mean, we've really lost a loved one here as well. Mr. L sounds incredibly special, even in that last scene where he wants his family to imagine a future without him. So tell us a little bit about your reflections from what you've learned from and with Mr. L about how people who have really no future to live think about their own future and sort of their presence or their memory for those who love them.

Dr. Janet Retseck: That's a very complicated question. For Mr. L. I think he was certain he was going to do well, that with all everything that we would be giving him, that he would survive and spend more time with his family and that's what he held onto. And I don't know that it was sort of delusional hope. We get every brand of acceptance and denial as oncologists. We have people coming in with their magic mushrooms, their vitamins, their vitamin C infusions. We have people going down to Mexico for their special secret treatments that have been withheld by pharmaceutical companies. We have people denying altogether that they are sick, coming in with fungating masses. But Mr. L was very different from that. His disposition was "Everything is good and it's going to be good, and I trust you 100%," and that's a big responsibility— is to take the patient's trust and to try to deliver on that. And in some way, my grief when he died was I could not do that in a lot of the ways the medicine world is at now. We break our patients' trust.

Dr. Lidia Schapira: That's an interesting way of looking at it, and I sort of would push back a little bit on that.

Dr. Janet Retseck: As you should.  

Dr. Lidia Schapira: Good. I'm trying to do my job here and say that you shared that you both were disappointed by the limitations of what current medicine can offer, and that's I think where you sort of spin your sort of philosophical and very beautiful reflection on the future. It is my understanding that that's where the title of this piece also comes, that you and Mr. L sort of could bond over his optimism and over the sort of futuristic view that medicine can fix anything until you couldn't. And then you both sort of adapted, adjusted, accepted, and again bonded in a very different way through the bonds of affection and support in presence. So I would not want your readers to think that your heart is broken because you disappointed him because you couldn't cure him, but that your heart is broken, if it was, because you had such affection and respect for him. 

I agree with you that he seemed to be well served by his optimism and it was working for him until it wasn't anymore. And I wonder if you could talk a little bit more about how you think about that optimism and hope and acceptance.

Dr. Janet Retseck: Well, I should come clean and say I'm an optimist myself. I have to be, as an oncologist. Here we are starting at the very beginning with a patient, a curable intent, or is palliative intent, and we are giving these very harsh drugs, and I am optimistic I am going to do good rather than hurt the patient. And I tell them that right up front, this is what we hope will happen. Optimism really subtends to everything that I do, as well as an oncologist. So I don't mean to say we shouldn't hope, we should not be optimistic about what we can do now, but there's also that tension with the desire to do better always for our patients.

Dr. Lidia Schapira: Janet, I was struck by your sort of teaching us about the origin of the word optimism. So, say a little bit more about what led you to go back to thinking about what the word actually means and how your patient illustrated this for you.

 Dr. Janet Retseck: Thank you for asking that. It was actually serendipitous because I had settled on the Star Trek motif for thinking about my relationship with Mr. L and Star Trek with all of its optimism about the future, and it just fits so well with Mr. L's disposition. And I thought I need to differentiate that from hope or wishful thinking or magical thinking because it is something very different. So I went to the handy dictionary and looked up optimism, and right there the first definition: optimism is a philosophy developed by Leibniz regarding the best of all possible worlds. In other words, this is the world that is the best possible one of all the possibilities, even with all the suffering and the evil and the pain that we have to deal with. And so I thought, well, maybe I'll learn a little bit more about this Leibniz. I'd heard the phrase ‘best of all possible worlds’ before.  

I did a little research and I found this wonderful article that I cite in my paper that described Leibniz and his optimistic science. And I thought, well, this is a real way in to thinking about Mr. L and putting into a larger context of optimism versus hope and optimism and its focus on the future. And really that idea of, not that everything that's happening to him is for the best, but it's the best. He got the best, and he very thoroughly believed that he was getting the best treatment, and he was. But my point was that even though it was the best, it wasn't enough yet. So where is that ‘enough’ located? And I think it is located in the future, but it's a future we can continue to hope for, and a future I think will come to pass someday. Someday we will not need to be oncologists, just like there don't need to be doctors who treat tuberculosis anymore.

Dr. Lidia Schapira: So when my son was very little and he heard me very optimistically also talk about new treatments and so on, he said to me, “Mummy, the day that there's no more cancer, what are you going to do?” If somebody asked you the same question? What do you imagine yourself doing other than being an oncologist?

Dr. Janet Retseck: Well, I guess I would go back to being an English professor.

Dr. Lidia Schapira: Tell us more about that. 

Dr. Janet Retseck: Now, I have let the cat out of the bag. So that little Ph.D. next to my name, I've decided to embrace that - that is in English. And as many people may know, the job market in English is not fantastic. And I've always had a bent toward science and medicine. And when I discovered that it was possible to go back and get my sciences, in part through sheer memorization, I decided to do that. Because what better way to spend ten years of my life than learning how to be a physician?

Dr. Lidia Schapira: So in the last minute of the podcast, tell us a little bit about your Ph.D. What is your area of interest, and have you taught? Are you planning to go back to teaching or are you currently teaching?

Dr. Janet Retseck: My Ph.D. is more or less in Victorian novel and interpretation, and I taught for 16 or 17 years, mostly community college, some at the Claremont Colleges, mostly composition, and I am teaching right now. This is what I love, being at the Medical College of Wisconsin. It is like I hit a home run coming here because they have a very strong medical humanities program. And when I arrived here, I was directly pointed to the directors of the medical humanities, “Look, here's a Ph.D. in English!” And I thought, “You mean I can do something with this here in medicine?” And so I connected with Bruce Campbell and Art Derse, who were instrumental in bringing narrative medicine to the Medical College of Wisconsin. So I'll be teaching a class of that in narrative medicine in the spring, and I do everything I can to teach the medical students and residents and fellows here at the Medical College of Wisconsin as a VA.

 Dr. Lidia Schapira: Well, that was quite a surprise for me. I didn't know that. I knew, reading your essay, that it was beautifully written. Thank you. I was going to ask what your Ph.D. was in, expecting you to tell me something about some branch of science I know nothing about. But this came as a surprise. So I am so glad that you're doing what you're doing. I'm sure your patients and your future students really appreciate it and will appreciate it. So thank you so much, Janet. 

And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast. 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experiences, and conclusions; guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. 

Show Notes: 

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Guest Bio: 

Dr. Janet Retseck is an Assistant Professor of Medicine at the Medical College of Wisconsin.

Listen to ASCO’s Journal of Clinical Oncology essay, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss” by Dr. Margaret Cupit-Link, who will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, MO. The essay is followed by an interview with Cupit-Link and host Dr. Lidia Schapira. Dr Cupit-Link shares her personal experience with childhood cancer and the importance of educating patients on the known and unknown consequences of their therapies so they can, when possible, participate in fertility preservation.

TRANSCRIPT

Narrator: It Mattered Later: A Patient-Turned-Doctor’s Perspective on Fertility Loss, by Margaret Cupit-Link, MD 

 I was 19 years old when I had to make one of the most important decisions of my life. The problem was, at 19 years, it was not important to me—yet.

With piercing clarity, I recall the very first time I heard the word sarcoma. My leg had been hurting, and I had just undergone magnetic resonance imaging. The doctor spoke of abnormal tissue. As a pre-med student, I blurted out the words, “it’s cancer, isn’t it,” and waited for him to reassure me. He did not—he could not—reassure me.

The days and weeks that followed are still a blur. There was more diagnostic imaging, a biopsy of my tibia, and placement of a subcutaneous port in my chest. When we learned that the Ewing sarcoma growing in my leg was not metastatic, my family celebrated; meanwhile, I struggled to eat, sleep, and breathe, unable to accept the reality that I was no longer a healthy college student. I was a patient with cancer.

Before my chemotherapy would begin, my mom and I had to give legal consent. Technically, I had to give consent—as if I would choose to say, “no thanks,” to the only treatment that could give me a fighting chance to keep living. With each potential side effect that was mentioned, I felt a piece of my morale slip away. Was I going to die? Maybe. Regardless, I would lose my hair, my appetite, my immune system, and my independence. Should I be lucky enough to live through it, I would be susceptible to a host of late effects from chemotherapy, one of which was infertility. Infertility, I felt, was the least of my worries; it paled in comparison with heart failure, secondary malignancies, and death.

As a 19-year-old, I did not want children. My career goals were my priority, and I had yet to be in a serious romantic relationship. Starting a family was not on my agenda. So, on the worst day of my life, when all I cared about was staying alive, I was told I could choose to undergo ovarian stimulation to harvest follicles in a somewhat experimental process that would delay the start of my chemotherapy by several weeks. Without hesitation, I said no. At the time, I did not realize I was lucky to have had time for such a conversation. My diagnosis and presentation allowed for a small delay before treatment; I would later learn that many patients do not get that luxury.

A little over a year after completing therapy and returning to college, I developed hot flashes, night sweats, and mood swings. On the basis of the levels of luteinizing hormone, follicular stimulating hormone, and anti-Mullerian hormone in my blood and an ultrasound showing ovaries without follicles, I was diagnosed with premature ovarian insufficiency and told it was unlikely my ovaries would recover. I was not heartbroken or even disappointed; I was still so thankful to be alive. I did worry, however, what this would mean for my boyfriend, the person I wanted to marry. To this day I am amazed that he, as a 20-year-old man, was completely accepting of me and my infertility and that never changed, even after he became my husband.

Near the end of my pediatrics residency, I came to understand the term baby fever. My coresidents were getting pregnant, my sister was having a baby, and my husband and I were settled down in our very first home. I visited a reproductive endocrinologist. It had been 9 years since I had completed chemotherapy, and I learned my ovaries were not functioning at all. I was told to plan on adoption—of an embryo or a baby—as I was not a good candidate for fertility treatments.

At first, I did not allow myself to react to this news. How could I mourn something like fertility when I was a 10-year survivor of childhood cancer, had exceeded my career goals, and was married to a wonderful person? Most of the time, and on the outside, I was unphased. I spoke about my desire to adopt with enthusiasm. I was honest about my ovarian failure and made jokes about being in menopause. I celebrated my friends’ pregnancies and came to love my nephew as if he were my own. 

I considered the many ways in which I could become a parent, each with its own barriers. Because I had not undergone oocyte or embryo cryopreservation before chemotherapy, having a genetic child was simply not an option for me. I could adopt a baby in need through the foster care system, which would not require monetary payment.

However, I knew then and now that the goal of the foster care system is to eventually reunite children with their families; although I was strong, I could not risk falling in love with a child and losing them to reunification. Private adoption was another option. While it felt unethical to pay a large sum of money in exchange for someone else’s baby,

I would one day have the luxury of being able afford the price tag (at least $20K US dollars [USD] to $100K USD in the United States, depending on the state and organization). Then, there were the options offered by modern medicine—embryo adoption or in vitro fertilization using a donated oocyte and my husband’s sperm. In these cases, even if my body was unable to sustain an embryo, I could use a gestational carrier (surrogate mother). While I knew that having a baby the old-fashioned way was not without its own costs and risks, it was undoubtedly easier than any of my options.

I did not admit—until now—that it hurt to know I would never experience the miracle of pregnancy. It hurt to know that I would never have a child that was half of me and half of my husband. It hurt to know that, even now, my cancer had taken something from me that I could never get back.

My experience with infertility has made me thoughtful about how infertility may affect my patients. As a pediatric oncologist, I am painfully aware that many of my patients who lose their fertility from the drugs I prescribe them will travel the same road of grief I have traveled. I am even more aware, however, that most of my teenage patients are not ready to make decisions about fertility—even when they are forced to do so. In my desire to counsel my patients on this topic, I have tried to imagine a scenario in which the advice of a doctor might have prompted me to prioritize fertility preservation. Perhaps I should have been told that delaying cancer-directed therapy by several weeks would be unlikely to affect my disease outcome. Perhaps I would have benefitted from knowing the complexities of the foster care and private adoption systems. Perhaps fertility preservation should not have been a choice at all, but a standard of care, as it is now.1 What I think I needed to hear, above all, was that I did not understand the gravity of my decision. I did not and could not understand the desire to become a parent that would one day overcome me. If I could go back in time and speak to my 19-year-old self, I would say, “it might not matter to you now, but it will matter to you later.”

Just days before I originally planned to submit this article, after 12 years of menopause, I experienced the unexpected. Seven positive urine pregnancy tests later, my doctor sent me for an urgent ultrasound, and it was confirmed: I was 6 weeks pregnant. At first, I felt I was no longer worthy of writing this article: how could I speak up about infertility from cancer therapy after having miraculously conceived a child? However, I eventually realized my pregnancy was yet another reason I should write on this topic.

Only now, as I hold my daughter in my arms, do I fully understand how much my fertility would come to matter to me.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Maggie Cupit-Link, a third year Pediatric Hematology Oncology Fellow at St. Jude Children's Research Hospital, Maggie will graduate from fellowship and receive her Master's in Clinical Investigations in June. She will then begin a position as a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri. 

In this episode, we'll be discussing her Art of Oncology article, “It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss.”

Our guest disclosures will be linked in the transcript.  

Maggie, welcome to our podcast and thank you for joining us.

Dr. Maggie Cupit-Link: Thank you so much for having me. It's an honor to be here.

Dr. Lidia Schapira: It's lovely to have you. I'd love to start just by asking a little bit about your motivation to write and share this piece. It's such an important piece and you really have shown us what was deep in your heart. And then there's this sort of unexpected resolution. Tell us a little bit about what led you to finally finish the piece and share it with the world.

Dr. Maggie Cupit-Link: So I've been writing for a lot of my life as a way to express myself and cope with emotions. And I had cancer when I was 19 and 20, Ewing sarcoma. And during my treatment, I found writing was very therapeutic for me and very healing. So that's when I got really into writing about my personal experience and actually published a book after I finished treatment. But then writing more recently, I was writing about my infertility, which I had from chemotherapy. And I would write about it and journal about it here and there because it was really challenging. And for a long time, I suppressed a lot of those emotions because I didn't think they were helpful. And I felt, I guess, ashamed and embarrassed to feel so upset about infertility as a cancer survivor who has so much in life. So many parts of my life are so normal and full and even more full than the average person so I felt like I wasn't really allowed to grieve my fertility. 

And I started to write a piece because I'm part of a working group, a group of physicians working together to learn more about fertility and pediatric cancer survivors, particularly those who have received immunotherapy, because there are a lot of new agents that we don't know as much about when it comes to fertility. And as I was working with this group, I started writing this piece on my own. And then I was about to submit the piece just to the group to show them my personal reflection when I took a pregnancy test and it was positive. So then I took seven–

Dr. Lidia Schapira: -other ones

Dr. Maggie Cupit-Link: I was not, I didn't believe any of them. Then finally I called my sister, and she told me that I was not acting like a doctor, that it was very obvious I was pregnant. And so then I went to see my doctor, but I found out I was six weeks pregnant right at the time of finishing this piece. And at first I thought, “Well, I can't write this piece anymore.” But the more I thought about it, the more I thought, “Well, either way, it shows that us oncologists really need to learn more about fertility.” And I'm very blessed and lucky to have this ending in my story, but it shows that there's a lot of missing information out there.

Dr. Lidia Schapira: That was an amazing answer, and I have about five different topics now that I want to discuss with you. But let's start with the end. And that is your baby. How old is your baby now?

Dr. Maggie Cupit-Link: So her name is Lila Jude. Two days from now, she'll be seven months on June 12. Her name comes from the family name Carlisle. That's where we got Lila. And then Jude comes from the Patron Saint of Hopeless Causes, St. Jude, but also the hospital that treated me and where I've trained, St. Jude Children's Hospital. So that name was very significant for us.

Dr. Lidia Schapira: So I'm getting goosebumps and teary just to hear you tell the story. Let's start a little bit with some of the themes that you touched on. The first is when you've said that you've always used writing as a way of processing emotionally complex situations as a patient, now, perhaps as an oncologist. Tell us a little bit about the book that you wrote about your experience.

Dr. Maggie Cupit-Link: Sure. When I was in treatment, I wrote a lot of entries in my journal, and it was just a way for me to process things. I think sometimes, for me, I don't know exactly what I feel until I write it down and make myself reflect on it, because I'm a busy body. I'm constantly going and doing. And so during chemo, I couldn't really do it. I had a lot of time to sit, and so I needed to write. And my grandfather is a retired Professor of Christian Philosophy. And during my year of cancer therapy, he and I started writing letters to each other because I had a lot of questions, understandably, about God. So the title of the book is actually “Why God?: Suffering Through Cancer into Faith.” And it's a lot about doubt and my anger towards God and what I would see in the hospital around me, the children who were dying from cancer, who even had it worse than me. It felt very impactful to my faith. 

But ultimately, through my conversations with my grandfather, he taught me a lot about another way to understand God, another way to understand faith in spite of horrible suffering, which I think is a thing for a lot of people because a lot of people in this world suffer. And so eventually we published a book. During medical school we published it, and it was a compilation of my journal entries intersected with his letters. And so part of it was really personal and raw and journal entry, and part of it was Christian philosophy. So it was an interesting combination.

Dr. Lidia Schapira: Well, Maggie, I will definitely now have to get your book and it'll be on my list for summer reading. So you touch on some of the fundamental, sort of ethical, moral principles of our profession, which is suffering and how we deal with suffering. And you've had a lot of time to reflect and philosophize and also experience this, as well as loss. Can you tell us a little bit about how your experience of loss has evolved over the decade of survivorship? 

Dr. Maggie Cupit-Link: I think initially, loss, for me, meant a lot of different things than it does now. I felt like I lost a lot when I was sick because I had to give up a year of college. I lost my tibia and knee bones. I have a prosthetic knee and tibia now, internal, and they function very well, but I don't have a real leg. I lost, of course, in chemo, you lose your hair. I lost a lot of tooth enamel. I lost a lot of friends because I was a teenager, and teenagers don't handle illness very well. People were afraid to talk to me. And then, of course, I lost my ovarian function. For a while, I think I focused on that a little bit more than what I had gained. But over time, it became very obvious to me that despite all the loss that I had during my year of cancer therapy, I gained a lot more. I gained a lot of perspective and a lot of emotional depth. And then ultimately, what directed me to my career decision. I knew I was wanting to be a doctor before I had cancer, but then after that year, I knew exactly what kind I would be if I got through the year. 

But I think one thing I've had to learn apart from that is being able to feel loss, even when you have so much. Because I have a lot of gratitude and I have so many good things in my life now with my health and my husband and now my baby and this wonderful career. Even though I have all those wonderful things, I'm still allowed to feel loss sometimes because I will be susceptible to late effects and there will be things in my life that are not quite normal because of going through cancer therapy. And then, of course, the other layer of loss is the people that we lose along the way. If you see behind me in my office, there's a picture of a little boy on the shelf up there. He was my good friend when I was sick. His name is Odie, and he died from hepatocellular carcinoma. When we were sick, he was a good bit younger than me. He was like a little brother to me during therapy. 

The loss of his life definitely propelled me forward to try to change more for other kids. And I think one thing I struggle with now as an oncologist and I'm still learning to do, is process the loss of my patients as it happens. I think I'm lucky that when I lose a patient, when a patient loses their life, I still see the beauty in what I was able to provide for them and their family. That's still a gift. I feel that it's important for me to grieve the loss of their lives, and I'm working on finding, like, the best way to do that for me over time. 

Dr. Lidia Schapira: You will find a lot of reflections on this topic in the pages of Art of Oncology over the last 20 plus years. I think that is a very, very common theme. I'm really impressed with how well you just understand the importance of this, to stay emotionally healthy and resilient. 

My next question addresses that a little bit, and it has to do with processing the early experience of being a cancer survivor. As a young medical student and as a young physician, what was that like for you? 

Dr. Maggie Cupit-Link: I think early on, I had a lot of guilt when it came to being a survivor. This concept of survivor guilt, I think you can read about it as well, and I'm sure there are some articles in the Art of Oncology about it. But the idea that, like, ‘why me?’ and when I encounter patients who go through similar diseases or experiences that won't have good outcomes, ‘why? Why me? Why did I get a good outcome and they didn't?’ And so early on, I struggled with that more. I felt guilty about it. I think over time, I recognized that the guilt– I mean, I always knew it was illogical. That doesn't mean we don't feel it. I think over time, I've recognized the guilt as unproductive. And so I tried to empathize with myself about it and acknowledge that I feel guilty. But then instead, what can I do with this feeling that's helpful? So where can I put this? What can I do to make things better for somebody with it? And I think that I've been able to do that better as time has gone along. 

I also think that early on in my survivorship, I thought that I had even more ability to understand patients' perspectives than I did. And I learned quickly that everybody's experience, even another 19-year-old with Ewing sarcoma who had to leave college, is so different. And so I've been humbled along the way in learning that just because I understand part of their experience does not mean I understand their experience all the way, and that I should never assume that I do. I should always listen and wait to try to understand more about what's different about their perspective. 

Dr. Lidia Schapira: I'm surprised a little and maybe delighted to hear the wisdom in your words. You are so young and yet you know so much. Did you have any mentors during medical school and residency who helped you process this? And then playing it forward, how do you imagine now that you're going to be an attending, mentoring others who may be the young Maggie and come under your tutelage?

Dr. Maggie Cupit-Link: I've had a lot of mentors, for sure, in life. I've been in therapy pretty much my whole life. I'm really lucky that my grandmother is a PhD psychologist and she's a clinical counselor. And so from the time I was a child, if there was ever a problem, I would go see a therapist. There was no exception to that, especially when I became sick. And then in the aftermath of that, I've frequently been seeing a therapist, and that really helps me gain wisdom. I think that's been one big source of mentorship. 

But there have been other providers that have been big sources of mentorship for me for this. One was actually a good friend of mine. Her name is Beth. She's a physician, a clinical research physician scientist at St. Jude, and she was a fellow when I was a patient. And we became friends back then. And then when I went back to college afterwards and then medical school, I shadowed her a few times. I did an away rotation with her once at St. Jude while I was in medical school, and during that time, I remember meeting a boy with Ewing sarcoma. And I remember walking into the room thinking, “Oh, this is great. I totally get this. I'm going to be so helpful to his mom.” And I quickly learned that he had metastatic disease, which meant, really, we had a different disease entirely. And that when I told his mother about me, I almost felt like it made things worse because she knew that my outcome was different than her son's was going to be. And I remember Beth afterwards reflecting with me, saying like, “Yeah, it is true. Everyone will have a different story, even if you understand a lot.” I think she told me, “You don't always have to tell people your experience in order to use your experience.” And so that was one of the ways that I learned. I don't have to share everything upfront in order to still have so much empathy and compassion. 

And then I've also had the honor to work with many doctors who have just role modeled, listening really well and really good bedside manner and compassion. The physician who treated me, Dr. Pappo, still works at St. Jude, and so I've gotten to work with him a little as well, and he role modeled wonderful bedside manner. And then my primary research mentor as well, Dr. Federico has taught me a lot. And just watching her with our shared patients and the way she tells family news and the way she explains things has been really helpful to me, too. So I would say a lot of mentors and a lot of therapy.  

Dr. Lidia Schapira: I like that combination. Clearly, it's been very productive and useful for you. Tell us a little bit about choosing to work in this field after your personal experience. I mean, it sounds like you were headed to St. Jude's to a laboratory to do research even before the diagnosis, but one could easily imagine that you would have chosen to become a dermatologist after this, or somebody who was not totally immersed in this culture of cancer and also a lot of grief and suffering, as we've just said before. Tell us a little bit about your research passion and how these two themes in your life, your personal experience of cancer and survivorship and your research, have meshed.

Dr. Maggie Cupit-Link: Well, I think I knew that I was going to do this career in some capacity when I was watching the kids around me during my treatment. And I think this is one of the reasons why it was so important for me to be treated at a pediatric institution. I know that the AYA population is sometimes treated with adults and sometimes children, and I would advocate that being treated with children is helpful because children are miraculous, resilient creatures. And I remember deciding that I was going to have to fix my attitude during chemo because I was very depressed and very angry and deciding that maybe it would help me if I could just play with the kids in the waiting room and try to distract them and make them have a better day. And so I decided I would try to do that for myself, but ultimately they distracted me and made me have a better day. And so the more I was around the kids, the more I knew that they just hold so much optimism and innocence and light that I feel that we lose as adults. And I wanted to be around it. So in a way it was selfish that I would choose this career because I just wanted to be with them, but also knew that if I was going to go through all this nonsense, I better use it. That was very motivating for me. 

And I think it has been a gift from my experience and maybe my therapy and who knows what else that I'm able to take the bad and the grief that I experience personally and use it to feel differently about the grief that I feel as a doctor. I think I feel differently about loss than my colleagues. It's still hard when I see patients suffer, when patients lose their lives, it's still hard. But I think it's hard in a different way than it is for some of my colleagues. And for some reason, I think I feel more comfortable in that space. I think I feel comfortable around that.

Dr. Lidia Schapira: Tell me a little bit more by what you mean by saying that it is hard, it has to be hard, but it's hard in a different way because of your lived experience. Tell me a little bit more.

Dr. Maggie Cupit-Link: I think I'm not uncomfortable around suffering and death. I think I feel very comfortable around children who are suffering and children who are dying, doesn't scare me and doesn't make me feel like I need to turn away, because I feel it's familiar in a sense. And I think I also, having been the patient who received so much comfort and support and love from providers, should I have died, I still would have valued all of that support so much that allows me to value the support that I'm giving, even in the face of death.

Dr. Lidia Schapira : Maggie, you're amazing. Tell us a little bit about your research and your plans now that you're going to be finishing your formal training? Where will we find Maggie in a few years? What will you be doing? What will we be reading?

Dr. Maggie Cupit-Link: Well, I have really enjoyed doing clinical research. Back in college, after I finished therapy and went back to school, I did join a couple different St. Jude labs and did a variety of different things. But I was not a natural in bench research. I broke a lot of things. I'm very clumsy. It was not my area. I was not good at it. And that's okay. I've decided to come to terms with that. I love science itself and it's been really wonderful to get this Master's in Clinical Investigations throughout fellowship because I could directly apply a lot of those skills to my research in clinical research. And so I'm really passionate about writing and helping with trials, clinical trials, but specifically would like to help with trials that focus on acute and late effects of toxicities. One of my major research projects has been creating a prospective study to evaluate the early late effects in high risk neuroblastoma survivors. And I chose that population because they receive all the therapies that you can imagine, the kitchen sink, and some novel immunotherapies that we don't really understand fully yet in mechanism of action, and so things like that, as well as evaluating acute toxicities and interventions for those. I distinctly remember every inpatient chemo that I experienced turning to my mom and saying, “There has to be a better way,” because my burden of side effects was really high. And I just remember saying, “There has to be a better way.” And my mom would say, “Yes, there has to be. You can figure that out one day.” So I do, I hope I can make some small changes in the way we give conventional therapy and the way we handle side effects as well as prevention of late effects. 

I am currently collaborating with  Children's Oncology Group on one of their projects in the late effects of neuroblastoma, and I hope to continue collaborating with that group as well as my career advances. I'll be an attending physician at Cardinal Glennon Children's Hospital, which is a part of St. Louis University. And I have family here in St. Louis. My husband is a dentist here with his dad. They have a practice together, so it was really important for us to be here. And this hospital is a charity hospital as well, which I really think is a wonderful thing. And that makes me feel a little bit tied to St. Jude, since it's a charity hospital as well. And so I hope to be able to continue some of the clinical projects and some collaborations with the COG as I take care of patients. And I do hope to continue writing other stuff as well. 

Dr. Lidia Schapira: Maggie, I have to ask you one last question, and that is that in your piece you say you were 19 and fertility didn't matter to you then, and you couldn't have understood then or couldn't make space for the later. Now that you are where you are and you're dealing with young adults who may be your patients in similar situations, tell me a little bit about how you think about involving the parents perhaps in this conversation or sort of making space to attend to some of these very thorny issues that may have so many repercussions on future health.

Dr. Maggie Cupit-Link: I think it depends on the patient of course. Because, as you know, some patients can't have a conversation about fertility based on medical acuity. But when a patient has the luxury of time, I think that that's just not a discussion I rush through. And I agree with you that using the parents perspective would be incredibly helpful. I think, I've had a few older patients that I discuss this with, and they're all different because I even had a 17-year-old patient who told me she wanted to be a mom for sure. And so she was different than me and that she already knew that was important to her. But when people think it's not important, I just encourage them to think about it more and talk to their parents about it and to remember that who they are today is not who they were 10 years ago, and who they're going to be 10 years ago is not who they were today. And that this is something you can't time travel with. This is your chance to make a decision. And really, the fertility preservation methods, generally, they're pretty safe and not traumatizing. And so it's sort of like, why not just go ahead and do it? Especially if the institution you're a part of is offering it. And I think there are a lot of ways to get funding for that, too.

Dr. Lidia Schapira: Well, you are definitely a champion.

Dr. Maggie Cupit-Link: Thank you. 

Dr. Lidia Schapira : I know that our readers and our listeners are going to follow your career, and I thank you so much for your thoughtful essay and for agreeing to this conversation. It's been a real pleasure.

Dr. Maggie Cupit-Link: Well, thank you. I have one more thing to tell you before we end.

Dr. Lidia Schapira: Yes, tell me. 

Dr. Maggie Cupit-Link: So after I had the baby, my doctor and I decided we would wait to get on birth control until we saw if I was going to go back into menopause or not. We waited, and then I got pregnant again. And so I am 16 weeks pregnant with a baby boy this time. And so I'll have my second child 12 months after the first.

Dr. Lidia Schapira: Oh, my goodness.

Dr. Maggie Cupit-Link: It is a blessing. But after that, I might have to consider birth control to space some- plan, space some people out a little bit. But we're very excited.

Dr. Lidia Schapira: The gift of your survivorship is now in your 30s. You need to have that conversation about family planning that most people and couples have earlier on. So congratulations. Congratulations.  

Dr. Maggie Cupit-Link: Thank you so much.

Dr. Lidia Schapira: Beautiful way to end. And to our listeners, until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.

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Guest Bio:

Dr. Maggie Cupit-Link will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri.

Additional Reading:
Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al

Dr Hayes interviews Dr. Lawrence Einhorn and patient, John Cleland, on the cure for testicular cancer.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's "Cancer Stories, The Art of Oncology," brought to you by the ASCO Podcast Network, a collection of nine programs, covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

Welcome to the "Cancer Stories." I'm Dr. Daniel Hayes. I'm a medical oncologist and a translational researcher at the University of Michigan Rogel Cancer Center. And I've also been privileged to be the past president of ASCO. I'll be your host for a series of podcast interviews with the founders of our field, have been, and will continue to be over the next several months.

In this series of podcasts, I'm hoping to bring the appreciation of the courage and the vision and the really scientific background among the leaders who founded our field of clinical cancer care over the last 70 years. I hope that by understanding the background of how we got to what we now consider normal in oncology. We can all work together towards a better future for our patients and their families during and after cancer treatment.

Today, my guests our Dr. Larry Einhorn, who first demonstrated the cure of testicular cancer with cisplatin. And we have a special guest, Mr. John Cleland, who as far as I know was the first man to be cured of this cancer with cisplatin in the world. Dr. Einhorn is currently the Distinguished Professor of Medicine on the faculty of the section of hematology oncology at Indiana University School of Medicine. Mr. Cleland is now retired after a distinguished career as a high school teacher in track and field coach in Indiana.

This interview is really particularly poignant for me. I knew John Cleland socially before I had ever heard of Larry Einhorn because our respective wives worked together while I was in med school as I began my clinical training. I then had the enormous privilege of being assigned to the oncology ward at the University Hospital for one of my rotations in internal medicine during my third year of medical school in 1977. And Dr. Einhorn was the attending. And frankly, for me, the rest is history. I had no chance. I had to become an oncologist.

Dr. Einhorn received his undergraduate degree at Indiana University, went to medical school at the University of Iowa. He then returned to Indiana for his residency and fellowship. But he spent an oncology fellowship year at MD Anderson, Houston. After that you then returned back to IU in 1973 and has remained there ever since.

He has won nearly every award and honor available in clinical research. And I'm not going to try to name them all, but most importantly, like me, as many people in this podcast series, he has served as president of ASCO, in his case, in the year 2000 and 2001. Dr. Einhorn and John, welcome to our program.

Thank you. Thank you.

Thank you.

Dr. Einhorn, I'll start with you. Obviously, your greatest contribution is the cure for testicular cancer, which is pretty good. Can you kind of walk us through the history? How did you get involved with cisplatin? How did you derive the three drug regimen? What were the early obstacles? Especially with your returning back to Indiana. Can you kind of just walk us through that history?

Certainly. So as you mentioned, I did a one-year fellowship in oncology at M.D. Anderson before returning to the faculty in 1973 and Indiana University. And in that time period, which was 46 years ago, the thought was that you might be able to cure adult leukemia like was cured with childhood leukemia from the wonderful studies from St. Jude's and that the studies that were ongoing in lymphomas and other hematological malignancies were very promising. But it was felt that you really don't want to do too much toxicity in a solid tumor, where you're getting a one log kill before you get progressive disease. And there was a clear pervasive atmosphere of pessimism of what can be done with solid tumors in general.

So when I joined the faculty in 1973, I was the only oncologist. We had two hematologists that were there in our small faculty, which went from 2 to 3. And I wanted to be involved with both liquid tumors as well as solid tumors. But I wanted to be involved with solid tumors that were chemo sensitive. And even back in the early 1970s, testicular cancer was responsive to older drugs like actin or myosin-D and later with a two-drug combination of vinblastine plus bleomycin. And there were a small number of not just remissions but cures, and that was one of the few solid tumors that actually had a modest cure rate back at that time.

And then the platinum story came around. And this is a podcast of itself with the wonderful work of a biophysicist at Michigan State, Dr. Barnett Rosenberg, who first discovered that platinum could be the first heavy metal ever to be looked at as antineoplastic agent. And when platinum entered first in human clinical trials in 1972 and 1973, it was [? selfed ?] at an NCI-sponsored phase I working group that I attended that this drug was producing minimal benefit and tremendous toxicity, especially horrendous nausea and vomiting. And the drug was pretty close to being discarded as a interesting novel mechanism of action, but not a drug that really had much of a future.

But what changed the history of platinum and changed the history of testis cancer was the fact that among the phase I patients were treated with platinum, which included melanoma, lung cancer, colon cancer, breast cancer, the usual type of patients that enter phase I studies back in those older days were 11 patients that had testicular cancer who had failed actin or myosin D, failed vinblastine, plus bleomycin, and so they received single agent platinum. And when we, even today--

Actually, where were those studies done?

That was done at Roswell Park actually, phase I study. And Roswell Park-- and this was an era, by the way, that there were only four NCI cancer centers in the United States, Roswell Park, M.D. Anderson, Memorial Sloan Kettering, and, of course, the NCI. So Roswell Park did a broad-based phase I study. Jim Holland was there at that time. He has unfortunately subsequently passed away. He was one of the real pioneers and also a past ASCO president.

So among the patients in that phase I study were 11 patients with testes cancer. And there were three complete remissions and two partial remissions. And even in 2019, if we saw that with the phase 1 novel agent, there would be a tremendous amount of enthusiasm generated.

We also looked at some of the preclinical work with platinum. And it is a drug that can cause testicular atrophy. In my youthful ignorance, I didn't realize that there are many drugs that cause testicular atrophy.

So with that as a background, in 1974-- and I was on the faculty for one year at that time-- we wrote a protocol to simply add platinum, a novel experimental drug, and added it to the established two-drug regimen that I learned about when I was at M.D. Anderson, namely vinblastine and bleomycin. And the principles of combination chemotherapy aren't complicated. We want each drug to have single agent activity, different mechanism of cytotoxicity, different toxicity, and platinum as a non-mild suppressive drug, which can be given in full dosage, with vinblastine as a mild suppressive drug, and evidence of synergy. And one of the unique characteristics of platinum is it is synergistic across a panoply of cytolytic agents.

So we started to study in the late summer of 1974 as a phase II study. And so we treated 47 patients when we first presented this data at the American Urological Association, later at ASCO. And I would be the first to admit that I was as startled as anyone that we were able to literally have a one logarithmic increase in the cure rate, because most progress in oncology is going from a 5% to a 10% to a 15% long-term survival rate. But all of a sudden with this three-drug combination, 60% of these patients were not only complete remission, but durable complete remission and cures.

There was a lot of toxicity with platinum. And over the years, we learned, as science tends to learn, when a drug is active to mitigate the side effects as far as nephrotoxicity and nausea and vomiting. And we made modifications to the treatment regimens as the years went by, as you know, with changing the dosages have vinblastine, lowering the duration of maintenance therapy, and eliminating maintenance therapy, reducing the number of courses of platinum, substituting etoposide for vinblastine to where it's now the standard, bleomycin, etoposide, platinum, or BET.

And I will make a final comment, in my long career, that this was a very exciting time in 1974. There were several chemotherapy drugs that were experimental drugs, such as doxorubicin and even a nitrosourea the first drugs to have penetration into the blood brain barrier. But the era of chemotherapy is gone and appropriately so. And science and medicine has moved forward. And now, we look at molecular targeted agents and immune checkpoint inhibitors and immunooncology. And that's what is exciting, so much more exciting about the field in 2019 than it was in 1974.

But nevertheless, platinum has had legs. In 2019, it is still first line therapy in 12 different types of malignancies. Of course, testis cancer being the poster child for curable cancer. And I often mention that just as platinum has cured thousands, tens of thousands, hundreds of thousands of young men with cancer, testicular cancer saved platinum, because if it weren't for those early studies showing activity of platinum, I think I can say without fear of contradiction that the drug wouldn't be around right now because of this tremendous toxicity in the early phase I studies.

Yeah, Larry, let me ask about that, because in the early 1970s when-- I wasn't around, but you didn't have antiemetics. You didn't have drug fractures. You didn't really understand the renal toxicity. Just briefly, how did you get around those? How do you get people-- I'm going to ask John the same question in a minute. What were you thinking, John?

John is the recipient of our ignorance in that era. So taking it one item at a time. Platinum is a heavy metal. And we were somewhat slow in realizing that other heavy metals, like mercury, can cause acute tubular necrosis. And so when patients were getting platinum, as is true in those days, they would often just get IV pushed platinum.

And so we learned that in order to prevent acute tubular necrosis, we needed to make sure that patients were well hydrated with IV saline solution before they start chemotherapy. We then give the intravenous platinum and then follow that with intravenous saline hydration, so that the drug doesn't accumulate in the proximal tubules, and we force a diuresis. And we never needed mannitol. And some people back then, in fact, perhaps even now, are doing the silly thing of mannitol diuresis, which is totally unnecessary. And so back in the early days before we had antiemetics, everyone had to be treated as an inpatient because we had to give 24-hour continuous hydration because of the [INAUDIBLE] from severe nausea, vomiting, and dehydration that would happen. Of course, today, it's all done as an outpatient with three or four hours of hydration.

As far as nausea and vomiting is concerned, one of our first studies we published in The New Journal of Medicine was a cannabinoid derivative from Eli Lilly, called nabilone. And so nabilone, didn't produce a marijuana-type of high. It didn't cause euphoria. It caused some dysphoria and had a variety of side effects. But it lowered the incidence of nausea and vomiting.

But what revolutionized chemotherapy induced nausea and vomiting, and ASCO recognizes this as one of the five leading advances in the past 50 years, was the discovery of the first 5-HT3 receptor antagonists. And this was a rational, selective pharmaceutical development. And this truly changed the face of how we give chemotherapy with drugs like platinum. Instead of having an average of 10 to 12 emetic episodes on day 1 of platinum, today with appropriate anti-emetics, the median number of emetic episodes is zero. People still get nausea. People still get occasional vomiting. But everything is done as an outpatient now.

And it's done as an outpatient because of the discovery by others of what is the mechanism with platinum, which is not a gastrointestinal mechanism, but affects the emetic center in the medulla oblongata and the chemo receptor trigger zone and finding that patients get drugs like platinum, they get high level of 5-HT3. And developing a selective 5-HT3 receptor antagonist change the field completely. And, of course, now we also [? weigh ?] a methasone and neurokinin-1 antagonist, aprepitant or fosaprepitant. And we also have olanzapine as far as the nausea issue. And olanzapine is probably the best drug for nausea. So patients today have no concept of what patients like John went through when we had no knowledge about any of this whatsoever. And we were looking at things kind of naively by 2019 standards.

I don't think I'm making this up. I recall as a medical student walking down the inpatient at University Hospital and thinking this smells just like my fraternity house.

Without the fun involved.

Yeah. And I got a kick now out of the so-called medical marijuana. But didn't you talk the administration into looking the other way for a while so that these guys could do that?

Sort of. What had happened with nabilone, it had to be under lock and key, as if it were gold at Fort Knox. When we had an audit by the FDA and we had-- I don't know how many, I think 60 or 70 patients on nabilone, you know, we had to make sure we had every consent form and every safety guarded and everything. You know, here, we're using these incredibly toxic chemotherapy drugs and there was no regulation at all. And here we're using a pill to lessen nausea and vomiting, and it was just the hoops you had jump through were tremendous.

When did you start realizing you had something big. Was it, you know, after two, three patients, or later--

Well, again, when you're young and dumb, it's easy, because you treat someone like John and you get the first chest X-ray three weeks later and things are gone and with pulmonary metastases. And you naively think, not only this cool, but, gee, that's great, it's not going to come back again. But we know even 40 years later that most epithelial malignancies that we get nice remissions with, the disease does come back again. So we had initial enthusiasm that platinum vinblastine myosin was a very active, but very toxic regimen. And we had the hope that this might be durable remission.

And, Dan, I actually first presented data with testes scores, not at ASCO, but with the Annual American Urological Association meeting, and that was 99% urologists there. And so we had 20 patients that we had treated. And then that following year, I submitted an abstract to ASCO. And back then, it wasn't done online. We would send a paper abstract with a self-addressed postcard that they would send back to us whether it was accepted or not.

And so when I sent in the abstract, I get the postcard back saying it was accepted as a plenary session paper. And I had no idea what plenary session even meant. It's true. And we get this postcard back in January for this June meeting. And all of a sudden my naivete went away, and I thought what, if I make a fool of myself? And I had this initial abstract with these complete remissions, and by the time June rolls around every one of them would have relapsed, which I was starting to learn happens in other tumors like small cell lung cancer, that are chemo sensitive disease. But fortunately, the time of presentation everyone was still disease free. And, of course, everyone for the most part remain disease free.

So we had the first glimpse of activity with the first few patients. But it really wasn't until patients were out at a year that we really had the realization that these were not temporary remissions, but these were durable. And as it turned out, permanent remissions and cures.

I wasn't there, but I understand that after you recorded that it looked like you had change the ratio of [? puranoctur ?] from 10%, 90% to 90%, 10%, that people in the audience, you had a standing ovation at the end of your presentation.

Yeah, it was very heartwarming. It's literally the walk on the moon type of things is the things that you do once in your career, you know, that you never forget about. I had the opportunity to do that and not one of those four NCI cancer centers, but little Indiana University with our faculty of three. And we had one oncology nurse at that time, Becky Furness. We had no data managers. We had no compliance office or anything else. And we were giving [INAUDIBLE] back in the 1970s.

I'd like now to turn briefly to your relationship with John Cleland. John, can you give us a brief history of your cancer treatment before you and Dr. Einhorn decided to go with the cisplatin.

I was a student Purdue University, the fall of 1973, when I discovered I had a lump on the my left testicle. And I went to a local urologist. And he examined me on a Tuesday afternoon, in the middle of November, and told me he wanted me at the hospital the following morning. And the following day after that, they performed surgery. And I was diagnosed with testicular cancer. That was November 15, 1973.

On the 29th of November then, I had a retroperitoneal node dissection. That was at the UI Cancer Center by Dr. John Donohue. And then on December 3, 1973, on a Monday morning, Larry Einhorn walked into my hospital room. And that was my first introduction to Dr. Einhorn. He talked to me a little bit and said we were going to put me on a 5-day course of a drug called mithramycin. We took mithramycin for five days. And then a couple of days after that, I was released from the hospital. So that was in the 1st of December of 1973.

The middle of February of '74, I returned to IU Med Center just for a routine checkup. And I was diagnosed there again with testicular cancer had returned. And Dr. Einhorn began putting me on a three-drug regimen-- adriamycin, bleomycin, and [INAUDIBLE]. And I was on that until about July of '74. Then I was on actin myosin-D for a couple of months. And then we ultimately started in on the cisplatin in early October of '74.

You have to tell us the story that you actually had to tell Dr. Einhorn about cisplatin because of a radio show you listened to.

Well, by the middle of the summer, I had been pretty beat up, after all the chemotherapy and the nausea and everything. And I didn't really have a job-- or I couldn't do a job or anything. So most of the time, I just lay on the couch in our apartment and listened to the radio or watch TV. And one day-- I really like Paul Harvey-- and he came on the radio every day at noon there in Lafayette, Indiana.

And one day he begins talking about researchers at Michigan State University. have maybe come up with the cure for cancer. So I begin listening much closer. And they talked about this chemotherapy called cisplatin. So I just made a mental note to myself, well, the next time I go see Dr. Einhorn, I'm going to ask him about this.

Well, a couple of weeks later, I'm down at IU. And he's palpating me and listening to my chest and all this type of thing, you know. And I began asking him about that. And he said, John, just don't get too excited about that. We've heard of these cancer cures before. Probably nothing important has happened here. Don't worry about it, you know. And then two or three months later, I'm taking it. So that was my introduction, Dan, to cisplatin.

Well, I can't to you--

Some of those Purdue graduates are pretty smart every now and then.

We get lucky, like a blind squirrel.

I just say, I can't tell you how many-- probably 100, 200 patients will told me things like this. And I've said exactly what Dr. Einhorn said to them, yeah, yeah, yeah. I wonder how many cures I've missed. OK, and the second story I want you tell us, John, is about your readmission to the hospital after your first cycle of chemotherapy.

Yeah, I started this platinum October 7, 1974. I had five doses in the hospital. And then I was released. That was on October 7. October 20 rolls around, which was a Sunday, and I was violently ill. I had a fever of over 104, almost 104 and 1/2. And I was just completely almost derelict. My wife and a couple of friends, we contact Becky first, us my oncology nurse. And I guess she called Dr. Einhorn. And he said, well, come on down and check in through the emergency room at IU. And so that's what we did.

We got there late at night, 9:30, 10:00 at night, something like that. And they always-- if I went to the emergency room, they always took a chest X-ray, which they did. And then in the hospital overnight and middle of the next morning, I see Dr. Einhorn and Becky getting off the elevator. My room was kind of in a corner. I could see part of the lobby out there and the elevator and the nurses station. And I could see them kind of go past the nurses station.

And I could just tell that something was up. Somebody had good, let's put it that way, just by their body language, and the way they looked at each other and talked and walked. And they kept coming closer and closer and closer to my room.

And finally, they walked in. And Dr. Einhorn says, John, your chest X-rays are clear. That's really good news. And, you know, I kind of interpreted that as, hey, I'm cure, you know. And ultimately, I guess I was, because from that chest X-ray the night before, my chest film was-- the weak before, my chest film was just riddled like Swiss cheese. And then the film was totally clear.

You probably don't know this, but I've seen your chest x-rays, which is probably illegal now.

Probably did a lot of illegal things back then.

And, you know, that's when the scales fell from my eyes and I said, I'm going to be an oncologist. This is unbelievable. But, you know, I think to emphasize, it wasn't clear you were going to survive that weekend. To survive, you would be cured. But that goes back to how toxic this drug was at the start.

Right. Right. It was not a lot of fun. I know that.

Yeah. Well, I want to get back, Larry, to you for a moment, because there were two people in your life who were really essential to this story. One, of course, was Dr. Donohue, with whom you have published the, I think, seminal and classic paper in the annals of internal medicine. You want to say a few words about John.

And the other is I'd love you to talk a little bit about Steve Williams. Steve was a fellow when I was a med student that I used to tease-- I mean, he's the only guy I ever knew who went from being a fellow to cancer center director I think in one year. I'm making that but-- he kept saying, you know, I might as well put me on faculty because he doesn't have any other fellows.

Sure. So when I joined the faculty in 1973, in July of 1973, as I mentioned, I was the first oncologists. There were two hematologists there. And John Donohue is a true gentleman, one of the world leaders in urological oncology and the urological transplant with kidney transplant and many other fields. His ability to surgically cure patients with extensive retroperitoneal disease was known worldwide.

And because of who John was and the fact that there were very few oncologists in the state of Indiana treating solid tumors, when he would see patients who would relapse after a retroperitoneal lymph node dissection, he would give chemotherapy himself, usually with actin myosin-D, which, by the way, causes almost as much nausea and vomiting as platinum did. And when I first got there, I knew John by reputation, but not by his interpersonal relationships with others. And with some fear and trepidation, I walked into his office because I told him I wanted to start looking at clinical trials in testes cancer. And I thought we might have a turf battle because he was treating patients with chemotherapy himself.

And he just welcomed me with open arms. And he was so enthusiastic about finally having a partner and someone to collaborate with. And we had a wonderful, 30-plus years of collaboration with many important discoveries that John made equally, as I did. And, unfortunately, after John retired, he subsequently died when he was in Florida.

And it's a similar sad story with Steve Williams. So Steve Williams was in my third fellowship class, which means we had one fellow a year. He was great, very humble, from Bedford, Indiana. And father was a newspaper reporter from the small town newspaper. And Steve was the eternal optimist. And to show you what an eternal optimist he was, when the Indianapolis Colts would those 14 games in a row, he always knew they going to win the next game, you know. And that's Steve. And John Cleland talking about Paul Harvey, Steve would have believed that platinum was going to be the cure too, you know. He was just a very positive person.

And Steve was very gifted. He has a great relationship with patients. And there's not a person, a doctor, nurse, or patient, who has ever said anything unkind about Steve. He's one of the kindest people that we ever had the privilege of knowing. And Steve was very much involved with our testicular cancer research studies and many other pivotal studies as well.

We decided to be a NCI cancer center, which is an enormous amount of work. And by then, we had about 10 faculty members in hematology, oncology. And no one wanted to do it. And so we went up to poor Steve and said, boy, Steve, this would be a great career move for you-- without telling him how much work is involved. We are cancer center today because Steve Williams made us a cancer center and everything that goes along with that.

And before leaving, and fortunately, we're talking about John being cured with fourth line therapy with platinum combination chemotherapy, whereas if John had had that disease diagnosed a year earlier, quite honestly, John, you wouldn't be alive right now. And it's sort of the opposite for Steve Williams. He eventually developed metastatic melanoma before any of the marvels with immunotherapy or even the BRAF inhibitors were around. And he eventually died from these diseases that he fought so hard to palliate and prolong survival and cure with metastatic melanoma.

And now there's a 30% cure rate--

30%, 5-year survival and continuous 5-year survival with single agent PD-L1 inhibitors. And I want to make a final comment about John. And if this were 2019, rather than 1974, and you're looking at a patient who has been through mitramycin, which is used by me as adjuvant therapy briefly for adenocarcinoma, which is what John had, and then going through actin myosin-D and all the toxicity with that drug and then gone through a adriamycin combination chemotherapy, and looking at fourth line therapy.

So when we started platinum combination chemotherapy, and John his fourth line therapy, yes, his chest X-ray looked like Swiss cheese, as he mentioned, but he was pretty much asymptomatic. And the courage and fortitude that it takes to go through treatment like this, because we knew what the side effects were with platinum. It had been around for about eight months, and we knew about all the horrendous side effects of the drug. We had no idea whether this would produce as fourth line therapy any prolongation of survival or any meaningful quality of life. And to go through this therapy without any idea whether it's going to help you, but to do it with truly altruistic motives and knowing that maybe this will help other patients in the future is really noble and admirable. And this is why John over the decades has been such a role model for clinical trials and for the cancer patient population.

And I want to follow up. John, briefly, tell us about your history since then-- your family, your athletics, your career. I think it's inspirational, frankly.

Well, I worked for the animal science industry for five years following my cure. And I decided finally I needed to give something back a little more to society than what I was actually doing. So I knew I wasn't smart enough to be a medical doctor. Male nursing wasn't exactly in vogue at that time, which might have been honestly a pretty good job for me. So I thought, well, I could be a teacher. I can teach life sciences. So background is pretty much life sciences in agriculture.

So I did. I turned to teaching and teaching biology for 31 years and did a lot of coaching of track and cross country. And my wife and I have three kids. I married my college sweetheart even before I had testicular cancer. And, you know, I owe her just about everything in life. She hung in there with me when times were really dark. And I say we got three kids. And I've had great job and great career and friends.

I want to emphasize you've had three children since your treatment. I also want to emphasize I know you've run one or two marathons since your treatment.

Actually, Dan, I ran four marathons.

So you ran four marathons since your treatment.

Four full marathons, yes, sir. And I believe that your baseline creatinine is something like twice normal. And, Larry, you probably know this better than I do. But, again you've been inspirational to all of us.

Well, thank you. Thank you, Dan. I'll tell you this. Every day I live is a blessing. I should have probably died 44, 45 years ago. I could drop dead at the end of this telephone conversation and have no regrets in life whatsoever.

Well, John, you keep thinking that maybe one day you'll live long enough to see Purdue win the NCAA, but I wouldn't count on it.

I was going to make a point, it must pain him truly to thank two guys from Indiana and also be appreciative of Michigan State, you know, for a guy from Purdue that must really be painful.

Well, yeah, you know, testicular cure is basically Big 10 centered with Michigan State coming up with this cisplatin and Dr. Einhorn being on the IU you faculty. But it took a Purdue Boilermaker to be tough enough to handle all that to begin with, you know.

That's true. OK, we're running out of time. I need to bring this to an end. I want to thank both of you again, both of you're inspirational, John for all the things we've talked about and Dr. Einhorn for so many of us who've gone into the field that we've trained and even the ones we've never touched directly, you touched hundreds of thousands of oncologists around the world indirectly. So thanks for all your contributions and what you've done. And thank you both for being on this podcast. I hope it opens up more inspiration for other young investigators and other young oncologists who don't really realize how we got where we are.

So with that, we'll end this. And thanks a lot. And hope you have a nice weekend.

OK, thanks, everyone. Have a good rest of the week. Bye, bye.

Until next time, thank you for listening to this JCO's "Cancer Stories, The Art of Oncology" podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's "Cancer Stories, The Art of Oncology" podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org

Dr. Hayes interviews Dr. Trevor Powles his involvement with translational medicine in the UK and early bisphosphonate.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

Conflict of Interest: Dr. Powles has not reported any conflicts of interest to ASCO.

TRANSCRIPT

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories-- The Art of Oncology brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all the shows, including this one, at podcast.asco.org. Welcome to Cancer Stories. I'm Dr. Daniel Hayes. I'm a medical oncologist, and I'm a translational researcher at the University of Michigan Rogel Cancer Center in Ann Arbor. And I'm also the past president of the American Society of Clinical Oncology.

Today I am privileged to be your host for a series of podcast interviews with the founders of our field-- today in particular Dr. Trevor Powles. Over the last 40 years, I've been fortunate to have been trained, mentored, and inspired by many of these pioneers. It's my hope that through these conversations all of us can be equally inspired by gaining an appreciation of the courage, the vision, and frankly the scientific understanding that these men and women who established the field of clinical cancer care over the last seven decades. By understanding how we got to the present and what we now consider, quote, "normal," end of quote. I hate using quotes, but in oncology I think we can also imagine our work together towards a better future for our patients and their families during and after cancer treatment.

As I've noted today, I'm really honored to have as my guest on this podcast Professor Trevor Powles. He's really generally considered one of the true pioneers in breast oncology. Dr. Powles was raised in London, where he went to medical school. He trained in medicine and surgery at St. Bartholomew's Hospital and associated affiliates, graduating from medical school in 1964. He went on to obtain a PhD at the Institute of Cancer Research. He directed his thesis towards hypoglycemia and bone metastasis.

Following his PhD, he then completed specialist training in medical oncology at the Royal Marsden and further pursued training in endocrinology with Professor Philip Bundy, [? who was ?] then Chief of endocrinology at Yale before moving to the UK. Dr. Powles remained at the Royal Marsden hospital during the bulk of his distinguished medical career, first as head of the Marsden breast cancer unit, and ultimately is the founding chairman of the Committee for Clinical Research for the entire Royal Marsden. After he retired-- which again requires [INAUDIBLE]-- at the age of 65, Doctor Powles has served on staff at the Cancer Center at London Parkside.

Dr. Powles has authored hundreds of peer reviewed papers. He's mentor of many of the leaders in breast college around the world, which we will discuss in a second. And he's really won too many awards and honors from me to list here, but they include the coveted William McGuire Award presented annually at the San Antonio Breast Cancer Symposium-- and by the way, so have two of his mentees, Professors Mitch Dowsett and Ian Smith. And he's also won the Nancy Brinker Award. Many of you know Miss Brinker founded the Komen for the Cure Foundation. And perhaps what is perplexing to those of us in the colonies, in 2002 he and his twin brother Ray were named Commanders of the Most Excellent Order of the British Empire, or CBE for short-- which of course is one of the highest honors one can obtain in the UK-- for their work in breast in Trevor's case, and haematologic cancers in Ray's case.

Trevor, I know that a lot of your work also was done with a variety of other contributors, including Dr. John Kanis, Dr. Eugene McCloskey, and of course Sandy Patterson [? period. ?] You've always been quite generous in pointing out that they had a lot to do with your own contributions, and we appreciate that as well. Dr. Powles, welcome to our program.

Thank you very much, and thank you for those kind words.

Yeah. Actually, I interviewed someone a few weeks ago, and he said, "Geez, that sounded like my mother wrote that."

[LAUGHTER]

I have a number of questions for you, and I want to start out-- your research and your background was really in endocrinology of the 1960s. And that was a particularly exciting time for endocrinology with the discovery of the hormones not more than 20 years before that, and then the increasing knowledge of understanding of [? the ?] peptides steroid hormone receptors. What made you veer off from that field into oncology in general and breast cancer specifically?

When I was working at the Hammersmith Hospital doing my endocrinology [INAUDIBLE] endocrinology there. And one of the conditions we would be looking at would be hypercalcemia with hyperparathyroidism. And hypercalcemia was occurring very commonly in the breast cancer patients in the oncology and the radiotherapy department. [? And ?] to begin with, we thought this would just be another paraendocrine-type syndrome, and that was the thing that really fired my interest. From there, I then wanted to do my PhD to look more into what was causing the hypercalcemia with breast cancer, and that started the whole path of finding out about bone metastases, what they were doing, how they were causing the hypercalcemia, and the path just continued and continued.

Most of your work-- I'm going to get to some of the other things you've done-- has been endocrine therapy, endocrine processes, and the bone metastasis, which is really endocrinology. In the United States about that time, most of the excitement in the 60s was around chemotherapy. Was it difficult for you to stick with the endocrine approach?

No, it wasn't really. When I first started, all of in the endocrine treatment was ablative treatment. And I knew that from when I was doing my endocrinology is that the hypophysectomy, adrenalectomy, oophorectomy, those were the early days for chemotherapy at using combination chemotherapy and metastatic disease. [INAUDIBLE] and endocrine therapies were far better treatments from the chemotherapy. And although I was doing chemotherapy because we started with single agents then combination treatments-- and there was a lot of chemotherapy going on at that time at the milestone for haematological cancers, lymphoma, teratomas, et cetera-- I was able to do that, but I really focused on the endocrine side.

And coming back to the hypercalcemia, the one thing that really impressed me was when I was originally doing my endocrinology was that rapid response you could get to the hypercalcemia by ablative endocrine therapy for oophorectomy, or adrenalectomy, or hypophysectomy. And that was really the thing that started all of the research I did in bone. It started on my PhD with in vitro work. We set up bone assays, I went to Cambridge to [INAUDIBLE] very famous scientist Cambridge to teach us how to do the bone assays for in vitro bone assays. We also set up the animal model with breast cancer. We were able to show that breast cancers could cause bone breakdown and osteolysis in vitro.

We could find that we could block that by using drugs like aspirin, and that got us very interested in cross [? demandings. ?] We could then go into the animal experiments. And when we had a rat model using breast cancer that we knew from our assays caused bone breakdown in vitro, and when we did that in the animals by injecting into the aorta we could get bone metastases [? and ?] soft tissue tumor. When we gave aspirin, we could completely prevent the bone metastases-- quite dramatic experiments. And that was what really fired me into getting into the oncology, getting into the endocrine treatment in oncology because of my background in endocrinology. And that has stayed ever since.

So what was the timing there? This is the late 60s?

My PhD was 1970 to '73. I was at the Hammersmith from '67 to '69, and then I went to [? Barts ?] to endocrinology, and then I came back and then with Bondy in the Marsden, and then I got on the staff of the Marsden as a senior lecturer in 1975.

So what you just described to me sounds like translational science. That word wasn't coined until probably 20 years later. Was it unique where you were to be taking things from the lab straight out to the clinic? And where there obstacles to doing that?

No, there weren't. The thing that was good about that was we were doing the laboratory work based on what we'd seen, what I'd seen in the endocrinology with the hypercalcemia and the bone metastases, and responding to endocrine therapy. I then was in the PhD, doing the PhD, and then I was able to translate that into the clinic once I then became a consultant.

So the main work I was doing when I was first a consultant, the research work, was actually looking at hypercalcemia bone metastases in patients. We had a surprise because when we took the aspirin into patients, we could see no effect at all even though we'd had very dramatic effects in vitro and in vivo. And it was only when the bisphosphonates came through that we were able to then use those, because at this stage we knew it was working on osteoclasts. And it was only when we started to get the bisphosphonates that we really got into the dimension of first of all, being able to treat the hypercalcemia, then being able to switch off the bone metastases, bone pain, and bone fractures with bisphosphonates. And then take it into the adjuvant, I was then able to take it into the adjuvant scene and set up the first adjuvant bisphosphonate trial.

So I'd gone right from in vitro, I continued the path right the way through to clinical work. And then what happened was that if we did the bisphosphonate trial and we got the result of just like that had happened in the rats-- it stopped the development of bone metastases and it stopped the hypercalcemia in the rats, but didn't affect the soft tissue. So in the humans, we had exactly the same result where we were able to reduce bone metastases, not have an impact on soft tissue or other disease, and improve mortality. And so we've gone right the way through. It's a story that's extraordinary from my point of view, because I was able to follow the whole path all the way through. And you're absolutely right. That is a really good example of translational research where you hang in there until you get the answer.

What's the history behind transferring the bisphosphonates from prevention of osteoporosis in cancer? Now they're widely used as well as denosumab. In fact, it's malpractice not to use them in a patient with bone metastasis. How did you make that leap where you're standing next to somebody who was treating osteoporosis, and you said, "I wonder if that should work?" And how did you get hold of the drug? There's got to be a history behind it.

Well, we were looking. We were looking for [? anti-osteodiscitis ?] agents [INAUDIBLE] the aspirin didn't work but [INAUDIBLE] worked so we knew for no reasons at all that it would prevent, stop hypercalcemia. And so we were going down that path, and two really important people in the way the path was going. One was Herbie Fleisch, and Herbie Fleisch [? had ?] suddenly produced bisphosphonates. It was a terrific story if anybody was interested in bone, because it was an agent that clearly was working on osteoclasts, and that was the target we were after. We knew at that stage that the cancer cells had to activate osteoclasts in order to cause the bone breakdown and develop in bone.

And the second person who was key was Craig Mundie, who again I met. And I went over to the Boston Dental Hospital several times, and I met Craig and the others there, and that was linking up with being able to see the story that they were developing where tumor cells were activating osteoclasts that were then causing bone breakdown that was then producing growth factors to activate the cancer. So it became a really preferential site for bone metastases to develop because of the interaction between the cancer cells and the osteoclasts. So then there's Herbie Fleisch in Switzerland. I had a few skis with him. He was a very good skiier.

But the spin off was that bisphosphonates were going to be the thing that we really [INAUDIBLE] to be looking at. And then we tried four different bisphosphonates. Five foot was a guy in Amsterdam who had APD that was actually the forerunner for [INAUDIBLE]. And the one that worked best for us was clodronate, which we got originally from Finland.

And we set up the bone trials. We had to go through three stages. We had to-- first of all, before we could use adjuvant, we had to show that it worked in metastatic bone disease. And it did. It reduced what's called skeletal related events-- that's fracture, hypercalcemia, pain-- requirements of radiotherapy.

We then did a trial for phase 3 trial of using clodronate for patients who had metastatic disease but who didn't have bone metastases. And we could reduce the risk of them getting bone metastases. And then we had the justification for doing the--

So let me interrupt you for a minute. Now you're about 1983 or '4 I think when that was probably? Is that right?

It was-- yes, it would be. With the adjuvant trial, we would have started in '86. I think. That's the window of time.

And then in that trial, we didn't get the results from that until I think it was 1997 when we did the first analysis, and that we were able to then show in that randomized-- it was placebo controlled as well-- we were able to show a reduction in bone metastases and improved survival. And then we did a subsequent analysis in 2006. So we've got longer term data. Back then where other bisphosphonate trials were going on, adjuvant bisphosphonate trails going on, and then we had the meta analysis in 2015, Oxford meta analysis, which I was involved with Rob Coleman. And we did the analysis there, which confirmed that we could reduce bone metastases and improve survival with adjuvant bisphosphonates. So the story that starts from a test tube, so to speak.

Oh, there's one other very interesting experiment we [INAUDIBLE] that's never been repeated. Right at the beginning, we were able to show that doing co-cultures-- you're reminding me of things now-- doing co-cultures of the bone assay with human breast tumors I'd get from the Marsden while I was at the institute. We'd have fresh human tumors, and we would do a co-culture and some of them could cause the complete breakdown of the bone assay, and others would not have osteoporosis. And we did a follow up of those patients-- it was only about 30 patients, I think-- and we did a follow up of those patients, and those who had the most bone breakdown in vitro [? with ?] [? those ?] patients who were then going to get the bone metastases. That was a real incentive to show that link that we were getting. So we knew something was going on there.

And that experiment was going on in 1971. And in 2015 with the meta analysis of bone mets and mortality. So that's a long story. That's the story.

Let me say that this entire story reiterates the phrase that, "On the shoulders of giants we all stand." You look at the number of people you've laid out who led to this story, which is still ongoing. It's actually fascinating. I want to return just a minute to your work with endocrine therapy of breast cancer and your work with tamoxifen.

But first of all, a lot of young people listen to this. 'Cause I came in the field just as surgical ablation of many of the origins of estrogen was going away. Can you talk about what it was like to take care of the patients who were having hypophysectomies and adrenalectomies and oopherectomies? I recall thinking, "I'm an endocrinologist here. I'm not a medical oncologist," as a first year fellow taking care of Addison's disease and other things.

There are two things about ablative endocrine therapy. The first was that the responses could be very dramatic, and it was quite a high response rate. There was something [INAUDIBLE]-- don't forget we weren't basing it on ER. ER came later, and then [INAUDIBLE]. Even not based on ER, we were getting 30% to 40% response rates, particularly in bone.

The second thing is the management of the patients. The hypophysectomies were relatively easy, because I'd already got experience of patients who got pituitary failure from my endocrinology, and that's much it easier to manage. But the adrenalectomies are much more difficult because you can get very acute glucocorticoid symptoms if you're not getting cortisol, whereas in hypophysectomies it's a relatively slow process. And they were much more difficult to look after.

But the thing that was important about it was the fact that although we were doing it, these patients were getting hypercalcemia [INAUDIBLE]. You could have a patient who was hypercalcemia, you do ablative surgery, within 48 hours the calcium is back to normal. In fact, it will go hypoglycemic sometimes on bone hungry [INAUDIBLE] thing.

And from a clinical point of view, it was some of the best responses we ever saw even up to this time. Now one of the things that came out of that was that we had one patient-- I can say a name because he's long since dead and [INAUDIBLE] anyway-- her name was Mrs. Pottinger. It's engraved in my mind forever. And she had bone metastases, and she was not particularly well and also had some heart problem. And she was due to have adrenalectomy, and she wasn't well enough for adrenalectomy.

And so what I did is I'd used [INAUDIBLE] when I was at the Hammersmith as part of treating Cushing's disease. And so I'd already knew about medical treatment for-- so I then decided that we would do-- and I think it must have been the first patient. I had to get permission from [INAUDIBLE], and I still got the letter I wrote to the medical director of [INAUDIBLE] then saying could we use [INAUDIBLE].

So what we do is the basis was in order to get her well enough to have her adrenalectomy, and she did exactly the same as she would have done if we'd done adrenalectomy. Within 24 to 48 hours, she's getting better, the pain's going, the calcium's down. So she then refused to have an adrenalectomy. There's no way she is going to have it. She said, "No I'll continue with the [INAUDIBLE]." And she continued on [INAUDIBLE] for over a year before she died.

And that started a whole new thing. [? Ian ?] [? Smith ?] was my registrar at the time. And so we decided we'd do a phase 2 trial. We did a Phase 2 trial of [INAUDIBLE] on the understanding we were doing a medical adrenalectomy.

And that started the whole story that we were doing using [INAUDIBLE], because a [INAUDIBLE] came over, I had various other people come, and what we found was the story was. It wasn't the medical adrenalectomy by blocking postmenopausal estrogen. And then we went down the pathway of doing various, about three or four different aromatase inhibitors with Mitch doing all of endocrinology. It's a wonderful time. We had Adrian Harris, Charlie [INAUDIBLE]-- [COUGHING]. [INAUDIBLE].

[INTERPOSING VOICES]

That's a parade of stars. Were you talking across the Atlantic a lot during that time with Dick [? Stanton, ?] and Angela Brody, and the other two who were also--

Yes. Angela Brody was the one who got us a source for [INAUDIBLE]. That was the phase 2. Charlie led on that on the phase 2. That was Angela getting us to do that and linked him with Mitch. And Dick Stanton, yes it was a lot of collaborative work with Donald MacDonald. And a lot of the endocrinologists I knew. So that was how that whole story rolled.

That's an amazing library. Let me take you back now to your childhood. I know you and your identical twin, Ray-- by the way for the listeners, if you Google either Trevor or Ray Powles, you'll see pictures of the two of them standing together. And I challenge you to tell who's who.

[LAUGHTER]

Anyway--

Well I could. I could tell the difference.

Yeah I know you can tell the difference. I know that you were both young boys in London during World War II. Tell me about the experience then, and how your mother moved you.

Obviously, we were very young. My father was in the Navy abroad, so my mother was alone and was looking after my older brother David, who was four or five years older than us. And I can remember the bombing. I can remember quite a lot about it, surprisingly.

We were evacuated up into the north of England 1943, 1944, something like that. And we were there for I think something like six months. And it was an incredible story. I went back to see-- I hadn't been back-- I went back to see-- I was up in the north of England, and I suddenly thought I'll go over. We were at a place called Stockton. And so I was five when we left-- four, four years old when we left.

And I had no idea. I knew it was Stockton, and I knew the name of the house was the Priory, and I had a faint recollection of the door. And then I went up to Stockton, and I found the house we were in. And I knocked on the door, and it was a major-- a colonel-- Colonel Brown and his sister who lived there. And the sister was still alive, and she must have been about 90.

[INAUDIBLE].

And she looked at me and she said, "You're one of the twins."

[LAUGHTER]

So we had a chat.

[INTERPOSING VOICES]

At the time, did you think of this as being frightening, or was it just a great adventure for a young boy?

Yeah, I wasn't unaware of danger. My house was bombed down the road flattened and presumably a lot of people died, but I was unaware of danger as such. We had a shelter-- it's something called a [INAUDIBLE] shelter, I think it was called-- that was half buried with corrugated iron as the top thing. And if the siren went, I can remember that we would have to go out and get into the shelter. And we could hear the V-1s very, very-- I can still remember. You can hear the V-1s coming over. It made a hum-- [HUMMING] --like that.

And it's gradually getting louder and louder, and then it would stop, and then it would just fall out of the sky at an angle. It would go down at about 45 degrees. So if you could hear the [? stop ?] overhead, you weren't going to be hit. But if you could hear the [? stop ?] coming towards you, there was a chance you were going to get hit. I can remember that. Everybody was sitting listening to where these bombs were cutting out their engine.

So that's one of the things I can remember. And I can remember the V-2. It was a huge bang if one went off.

I know that you and Ray both also developed tuberculosis as young boys. What was the background behind that, and how were you treated?

Yeah, Ray-- we'd just finished school. And we weren't sure what we were going to do, and Ray had developed [INAUDIBLE], which again didn't mean anything to me. He coughed up a couple of times or [INAUDIBLE] of blood. And the next thing he's carted off and he's got tuberculosis, and he's been taken down to a sanatorium down near the Thames out along the marshes sort of thing. And he's there for six months. And during that six months, I can't see him and everything, and I thought, "Well, you know I'd like to do medicine. I think this is rather a good thing."

So what I did, I then applied for medical school and got a place. And then Ray gets better, and he then applies to medical school, and he gets a place as well. The dean said to Ray when he saw it, he said, "Haven't we seen you here before?" And Ray said, "No, it's my twin brother." And he then says, "Did we accept him?" And Ray said, "Yes." And then he said, "Pity."

[LAUGHTER]

And it was the end of the interview. The next thing, he's in as well.

[LAUGHTER]

And then I get TB, because it's about an 80% chance you get it if an identical twin's had it. And I was in the hospital for three months. So we were both back a year. I would have been a year ahead of Ray, but in fact then suddenly we're both back a year. And it was quite an interesting year for me, because I only had one subject to do. So I was able to do some reading, things like Darwin and that sort of stuff. And then we just carried on.

And you were treated with streptomycin in those days?

[INAUDIBLE]. You had 50 grams of strep.

Yeah, yeah. Sounds like you used that as a springboard to change the practice of medicine. So in every cloud there's a silver lining. The one thing I want to bring up-- I remember several years ago at one of the San Antonio meetings, and you and Dr. [? Bernie ?] Fisher were the bait. And he did all but call for you to be arrested and locked up because your study was negative, and of course the [? PL1 ?] one was positive. And you very graciously responded to that, "You know, Dr. Fisher, I didn't start this trial up to be negative."

[LAUGHTER]

That was a great response.

My goodness did I not admire him. The reason I did the trial is-- again, this is a funny story. I did a lot of horse riding, as you know. And what I did is after the 1985 first meta analysis, Oxford meta analysis, that was the first one to show that chemotherapy worked for the [INAUDIBLE] and other trials that chemotherapies show the reduction. And it showed that tamoxifen worked. That was the first meeting where I was really convinced that both those were positive effects.

Up till then, it was one trial and you couldn't be sure if it was going to be reproduced all the like. And that was the 1985 meta analysis meeting in Oxford. And then I came back home, and I got on my horse, and I rode for a week. I took the horse down to the South Downs. The South Downs is a long, expansive country, and it took me five days, I think it was, of riding to get across from one side to the other where I'd stop in a pub. I had to go down the week before and plan out exactly what I was going to do.

So I've got five days on a horseback thinking, and that was where I thought, "Well, where do we go from here?" You might say, well, let's do bigger and better chemo or the like, right? And you might say endocrine therapy, let's do more tamoxifen, or different doses, or [INAUDIBLE] down those paths. So I said, "But if you really want to do something different, the two things you could do would be for chemotherapy is why not give it before surgery?"

That was the time when I really thought neoadjuvant chemotherapy was where we ought to be going, because then we could see that they're responding or not et cetera. But tamoxifen, if it weren't for adjuvant therapy, then it should work for prevention. We had a clinic at the Marsden that I took over because somebody was leaving-- which was a family history clinic, and they all had very strong family histories three or four relatives, et cetera, et cetera. And I took over this clinic, and I thought to myself we could do a prevention trial here with tamoxifen. We'll do a pilot.

What happened at the Marsden they just had a ethics committee set up, one of the first in the world. This is in 1985. And it had never met, it had only passed the trials to be done. And so the first meeting of the ethics committee at the Marsden was to discuss the prevention, because it was such a awful thing to do. Do you know what I mean?

And but after two or three goes, I got it through the ethics committee mainly because a colleague of mine who was the head of medicine then was Tim McIlwain. He pushed it through because he said "Look, it makes so much sense." And we did a [INAUDIBLE] and we had an agreement that we could do 250 patients randomized, then go to 500. And then we had a national meeting to discuss setting up the national program. And so it was a feasibility trial actually looking to see what the toxicity was or whether it was acceptable to do it. And we had such a spin off from that, because tamoxifen at that stage was supposed to be a pure anti estrogen.

And we were screening all the tissues, we were doing bones that [INAUDIBLE] from the clotting factors. Everything. Cholesterol. We were doing, measuring everything in pre and post menopausal women. And everywhere we looked, tamoxifen wasn't acting as an anti estrogen. It was acting as an estrogen effect, so much so that at the Think Tank-- I presented it at the Think Tank, and I said, "Look these aren't [INAUDIBLE] tamoxifen and anti estrogen at all."

And I thought Mark, dear old Mark Lippert, was going to have an epilepsy, which 'cause it's correct because it is an anti estrogen breast cancer effect. But that was the first time. So then in the paper I wrote, I called it a selective anti estrogen. But I didn't coin [INAUDIBLE], but I did coin the expression, the first published thing of a selective anti estrogen.

I remember that paper.

[INAUDIBLE].

I remember that. So I want to finish up with just--

Let me just finish up one thing. Can I just finish up one thing?

[INTERPOSING VOICES]

Because it links into [INAUDIBLE]. So after Think Tank presented it possibly as an estrogen. And what was happening is we've got a bell shaped curve that was very narrow. So we were on the estrogen side as opposed to the anti estrogen side, right? And that was what was happening in the normal tissues. So I had a slides that said, "Tamoxifen is not an anti estrogen."

You probably remember if you were there. You were there. We go out on the boat, and we get stranded out of the boat in the mist-- the one you've mentioned about where you and I and Mark, et cetera-- when we're approaching the time after about four hours when we're thinking about meeting our maker, Mark says to me, "I've really got to have a word with you about this anti estrogen."

Well one other thing-- and this is going to be more my talking than yours. I really just touched on the surface of your contributions to the field, but I think probably the greatest is your mentoring history. And you've already hit on a few of these, but I travel extensively and I'm struck by the number of times I've been in some remote area-- or at least remote to me-- and corner of the world, and somebody-- it's usually my host-- volunteers that he or she trained at the Royal Marsden with Trevor Powles. And I think it's one of the things you should be most proud of all the many things you've done. And I want to know that you set up a system that was opening and inviting and also somehow funded to support people to come from all over the world.

What made you do that? How did you do that in the first place? It's hard to do.

Certain people came to me, which was very nice. We did have funds. I would be able to get funding even at that stage. There are many more hurdles for getting funding now than there were then. And the other thing about it was the fact that I find that people-- many times we've [INAUDIBLE] [? mentioning ?] things-- but one of the things I really did [? let ?] is let people have the run of doing things as opposed to me doing it maybe with the assistant. And that was very rewarding for me in terms of results and [INAUDIBLE], 'cause people were very motivated to do it, people like you, and Charlie, and the others.

So in some senses, I think it was the fact I was looking for the results we wanted to get rather than anything else. That's probably the basis of it, and therefore people came who ere good. And I'm very lucky I had very, very good people come.

So just to go through the list briefly-- Ian Smith, Mitch Dowsett, Troy [? Kohns, ?] Adrian Harris, Paul Goss, who am I leaving out? Anyway, it's a who's who of breast cancer, especially endocrinology and breast cancer. And they all came out of your brilliance. So we owe you not just for what you've done, but who you've trained to do even more.

Very kind of you to say that, but in fact they get the credit because if you look through my publication lists you can see.

Actually, I left out Steven Johnston, of course, who is--

Steve. Yeah, Steve.

Yeah. OK, we've run out of time. I very much appreciate the fact that you've taken time to come on and do that for us. I'm sure our listeners will be thrilled by the stories you've told-- at least I always am-- and it's great to hear most of them again. And I hope sometime we can even do this again. So thank you for all you've done, thank you for all the people you've trained, and thank you for taking time to do this today.

Well, thank you so much for asking me.

Until next time, thank you for listening to this JCO's Cancer Story-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

Dr. Hayes interviews Dr. Lichter on his involvement with early breast preservation.

Dr. Daniel F. Hayes is the Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Rogel Cancer Center. Dr. Hayes’ research interests are in the field of experimental therapeutics and cancer biomarkers, especially in breast cancer. He has served as chair of the SWOG Breast Cancer Translational Medicine Committee, and he was an inaugural member and chaired the American Society of Clinical Oncology (ASCO) Tumor Marker Guidelines Committee. Dr. Hayes served on the ASCO Board of Directors, and served a 3 year term as President of ASCO from 2016-2018.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's Cancer Stories-- the Art of Oncology, brought to you by the ASCO podcast network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the role of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

Today, my guest on the podcast is Dr. Allen Lichter Dr. Lichter has a long and really storied history in the field of oncology over the last five decades. With his colleagues at the NCI, Drs. David Danforth and Mark Lippman, he was the radiation oncologist PI for one of the four studies that demonstrated that breast preserving therapy was as effective as mastectomy for newly diagnosed breast cancer.

He more or less single-handedly started the Department of Radiation Oncology at the University of Michigan, now considered one of the top programs in the world. He is one of only three radiation oncologists to have been a dean at a major university in the United States, serving as such at the University of Michigan Medical School for eight years.

And he is one of only three radiation oncologists who have been president of ASCO. The others are Sam Hellman, who I've interviewed previously, and our current president, Dr. Lori Pierce, who, by the way, is also from the University of Michigan. And his term was from 1997 to 1999.

Dr. Lichter was born and raised in the Detroit area. He received his undergraduate and his medical degrees at the University of Michigan, after which he completed an internship at a community hospital-- St. Joseph's in Denver-- and then a residency in radiation oncology at the University of California, San Francisco.

Following that, he joined the faculty at Johns Hopkins University, but after two short years there, he moved a few miles south to the National Cancer Institute in 1978, where he was head of the radiation therapy section of the radiation oncology branch. I believe you couldn't have been more than 32 or 33 years old, Allen, at the time. I counted up the years.

He then moved back to Michigan to start the department here, which he chaired for eight years, and then became the dean for eight years. And then he went on to become the Chief Executive Officer of ASCO from 2006 to 2016. In spite of spending the last 20 years of his career as an administrator, Dr. Lichter has authored over 120 peer-reviewed papers. He was the co-editor of Clinical Oncology, one of the major textbooks on oncology, and has really been a leader, especially in radiation oncology, but in cancer in general in this country.

I also want to add he was my boss for eight years when I first moved to University of Michigan, and during which time he was also my next door neighbor here in Ann Arbor. And I got to be his boss for one year-- if anybody could be Allen Lichter's boss-- from my term as ASCO president. Dr. Lichter, welcome to our program.

It's great to be here, Dan.

So a number of questions. I know, first of all, you grew up in Detroit and you went to Cass High School. And while this podcast is supposed to be about the history of oncology, having moved to Ann Arbor, I find the history of Cass High School awfully interesting. Has a number of famous alums, including Diana Ross, Lily Tomlin, Ellen Burstyn, Della Reese, David Alan Grier, Jack White, Alice Coltrane, and-- my guess is, Allen, you don't even know who Big Sean is, but he's a rapper. He's very famous right now for the younger generation.

Any memories from your time there? Did you run into celebrities when you were there? It's quite a place to say you're from, I think.

It's an interesting school, mostly a technical high school, located in downtown Detroit, but with a small college preparatory program that took students from all over the city with a competitive entrance exam. And I don't know what possessed me to get on the Second Avenue bus and ride downtown back and forth every day, but it was a fascinating experience. It takes you out of your normal peer group.

I met young people-- friends-- from all walks of life, from all corners of the city. And it was a pretty rigorous education. I enjoyed it a great deal. And I played on the golf team.

And it sounds to me like you knew you'd be a doctor then. Your father was a family practice doc in a small community just outside of Detroit. Was that true? Did you plan to go to medical school? Or did you have some epiphany when you were at high school?

No, I never remember a single day not wanting to be a physician. My dad was a general practitioner and really instilled in my brother, and in me, a love of science and a love of medicine. My brother went on to be an ophthalmologist and was chair of the department at the University of Michigan for 34 years, President of the American Academy of Ophthalmology. So my dad and my brother set great examples for me, and into medicine I went.

So I have to tell you, my father was a business man and was disappointed that I was in academics because he never understood why I wasn't generating income. My brother went to work for Eli Lilly. He was a doctor, too. And dad always thought he was doing something productive because he worked for Eli Lilly. So I don't know if your dad was disappointed you went to academics instead of family practice, but--

It was interesting. When I started my residency training, I was certainly confident that I would head into private practice and live a life much like my father did. And when I finished training, I decided I just needed a little more buffing up. I figured I'd go into academics for a couple of years, just to make sure I had a good grounding, and then go into private practice. I love the academic life and stayed there my whole career.

I've been fond of asking previous interviewees-- why'd you choose oncology, and specifically radiation oncology, in your case? What led you to go into this path? Especially 40 years ago-- there wasn't a whole lot of oncology to go into.

Well, you know, I was one of those medical students that loved virtually every rotation, and after that rotation I was going to become a fill in the blank. In my senior year of medical school, we were allowed to take an away elective, and I wanted to explore radiology as a potential field. My brother had a very good friend who was a radiation oncologist at the University of California, San Francisco, and the chance in the early 70s to go to San Francisco-- especially avoiding the Michigan winter-- was very compelling.

So I signed up for the electives, and when I got there, I found that it was six weeks of diagnostic radiology and six weeks of radiation oncology. I hadn't expected that, but what the heck. So I did my six weeks of down in the basement looking at teaching sets, which was really quite inspirational. And I went into radiation oncology.

And after my first day, I called my father and I said, I found what I'm going to do. I'm going into radiation oncology. It was instantly fascinating. I love the camaraderie in the department. I love the blend between the physical exams of patients, the treatment of cancer, the use of very high technology equipment and physics. It just struck me and I never wavered from that point on.

So I've heard you talk about this-- and I'm 10 years behind you and even was true when I trained-- was that there wasn't a whole lot of science in radiation oncology back 40 years ago. And the field has evolved. And there are two things-- one you already hit on, which is it was combined with diagnostic radiology. And the second is it split away from diagnostic radiology to become its own field, and a lot of science.

I've spoken with Saul Rosenberg and Sam Hellman and sort of asked them the same question. Give us just a background of the last 40 years of the evolution of radiation oncology because you had a lot to do with that.

Well, of course, the field grew up, as you point out, inside the broad field of radiology. I always would tell my trainees that when Rankin discovered the X-ray, he forgot to discover the instruction manual. So there was a trial and error learning with this very useful technology, but very dangerous technology over a long period of time.

For quite some period of time, you trained in general radiology. You had some time in diagnostic a little time in therapy, and you went out and could do both. But as I entered the field, it was becoming more and more difficult to learn radiation oncology in just the few weeks that they rotated in from their diagnostic duties.

And I was one of the earliest group of trainees who trained in straight radiation oncology-- no diagnostic training, per se. And the field, as you say, split from diagnostic radiology. Had our own boards. I was amongst the earliest group to take the specialty board in radiation oncology.

And the other thing that was true, certainly back in the late 60s and early 70s, is that so much of the field was experiential-- that is, people wrote papers like, you know, the last 100 patients with cancer of the lung that I treated. And this was valuable, but the need to do rigorous, well-controlled clinical trials was obvious to everyone inside the field.

And so the field did become much more scientific. Never quite much as medical oncology, and part of that is because devices are treated differently at the FDA than drugs. Drugs you have to prove through scientific investigation that the agent is safe and effective. And then you can release it for patient use.

For devices, you just have to prove that it basically doesn't kill anybody. And you can get an approval of a device and often get a billing code for the device. So the approval comes, and then you're supposed to do the science.

Well, a lot of people, at that point, they're just too busy using the technology, then, to actually step back and do the science. And, of course, if you spent a lot of money for a piece of technology, to do the science to find out that wasn't a very wise investment is not in your self-interest.

So our science lagged behind. I think it is certainly catching up, but it's still, in fact, in many cases, has a ways to go.

I have enormous respect for our colleagues in the FDA on the devices side, and their hands are tied a bit. But I liken some of what they do to being like underwriter's laboratory. If you plug it in, it doesn't blow up, so they approve it.

Yes. It's a little more than that, but you're right. And so much of the device approvals are based on a predicate of a similar device. And it goes from A to B to C and finally, you know, years down the road, the equipment and its use and its underlying structure is so different from the original device that was approved years ago that you rely on, at every step of the way, it really has-- there's been a lot of scrutiny about changing that, and I think over time it will change.

You know, historically, it's interesting, by what you just said-- some of the first prospective randomized trials in all of medicine were radiation versus nil to the chest wall with breast cancer. To my knowledge, streptomycin versus nil for tuberculosis was the first, but then a whole series of radiation versus nil.

But who would you give credit in the United States-- I would give part credit to you with the work you did with Drs. Lippman and Danforth. Probably one of the first randomized trials in radiation in this country.

Well, you're correct that the first chest wall radiation trial started in Manchester, England in 1948. And at that point, doing randomized trials-- giving some patients the therapy and other patients observing or giving them a placebo-- that was not in widespread use in medicine. And over time, those types of trials began to become more common.

I think in radiation oncology, our big advance was becoming part of the national co-operative group system, where many of the co-operative groups-- maybe all of them-- had a radiation oncology committee. And our studies were often integrated with surgical care or combined modality care with chemotherapy. And so we began a series of very important studies in breast cancer and lung cancer.

The pediatric group did many, many trials that involved plus or minus radiation. I don't know that there's any specific person I'd give credit to, but it was the movement inside the field to join our other oncology colleagues in testing things rather than just doing observational work.

You know, in that regard, let's circle back to your work at the NCI. That must've taken a fair amount of organizational and political skills to mount a breast preserving therapy, just at the NCI. The data that breast preserving therapy was safe was just beginning to be reported. The randomized trials in other places were ongoing. Give us some story there, how the three of you got that going and how you ran that.

Well, of course, virtually everything at the NCI, from a clinical standpoint, is a clinical trial. Patients aren't treated there, just as going to their community hospital. You come to the NCI-- the travel is paid for, the care is paid for, et cetera, based on your agreement to enter into a study.

At the time that I went to the NCI, the NSABP was doing their very large trial of lumpectomy versus mastectomy under Bernie Fisher's direction. My concerns were twofold. Number one-- this was being done at many, many centers around the country, and one could, I think, logically ask the question whether the quality of that care was going to be uniformly high enough to truly test breast preservation therapy. And secondly, I believed-- and many of us believed at the time-- that a boost to the tumor bed was quite important as part of having a low rate of local recurrence, and the NSABP study did not use the boost. They just treated the whole breast and stopped.

And I said, you know, let's do a trial where it's done at a single institution, where the quality is going to be absolutely top notch, where we're going to use a boost and all of the technical tricks that we knew how to do this, just in case the NSABP study didn't come through. We'd have a backup. If both of them were negative, we could forget about lumpectomy and radiation, but if the NSABP was negative, we'd have this.

As it turned out, the NSABP study, as you know, was positive, established for sure the equivalence of preservation therapy, and our study was sort of a little caboose at the end of the train. But that's OK. It confirmed what Ernie and colleagues confirmed very emphatically.

Actually, there's an interesting article in the JCO written by Ian [INAUDIBLE] and his colleagues, about six months ago, that he preluded when he won the award your last year as CEO at ASCO. Was it your award? I can't remember.

Yes.

But anyway-- yeah. And in which, he designated the term I hadn't heard before of statistical fragility. And he made the point that many single prospective randomized trials are positive and the subsequent ones are not. And I give you and, of course, the Italians and the Brits also ran similar trials. It's nice to have four trials that all show the same thing. There's no statistical fragility in this observation.

Yes, well, the NSABP trial was 1,800 patients. Our trial was about 240. We weren't going to change the world, but it was at least comforting to me that we had this trial coming along just in case.

The other academic success that I give you credit for and would love to hear more about it is that you're interested in CT planning, which I think, really, was the forerunner, now, of stereotactic radiation and I would call precision radiation, as opposed to just blasting an organ and hoping you hit the cancer.

And I think, really, a lot of that you brought when you started the department here. But how did you get interested in that?

When I went to the NCI, my first day there, they took me on a tour of the department and we walked by a room with a locked door. I said, what's in there? And they said, oh that's our CT scanner, but we never use it. So I said, well, let me see it.

And, you know, this was an EMI 5005. This was one of the early scanners. It was a body scanner, but it had a fairly small aperture. You could not get a lot of Americans into this machine. And I said, well, why don't we start scanning some patients. As long as-- does anybody know how to use this thing? Yes? OK, let's start scanning some patients.

And it didn't take long to recognize that this was a machine that was almost tailor made to do radiation therapy planning. It gave you the contour of the patient's surface. It showed you the inside of the patient. It showed you the tumor in most settings.

And remember, at that time we were facing radiotherapy treatment planning on plain x-rays taken on the simulator where, for example, when you treated the prostate, you never saw the prostate. You knew where the pubis was. You knew where the rectum was. You knew where the bladder was. And you knew the prostate had to be in there somewhere, but you never saw it.

When we started to CT scan the pelvis in prostate cancer patients, there was the prostate in all its anatomic glory. And so we began to plan on this. And then it became pretty clear that if you took these slices and stacked them back up, like if you took a loaf of bread and it was laying out on the table as individual slices and stacked the slices back up, you could rebuild the three dimensional picture of the loaf.

We decided that that might be a good thing to do with CT scans. And that's when I went to Michigan, and that's when we brought together some terrific physicists and brilliant programmers and spent a lot of money on a roomful of computers and began to do three dimensional reconstruction. And that led to a transformation in radiation therapy from a two dimensional specialty to a three dimensional specialty.

And you could start firing at the tumor from cross sections from different directions. We didn't have to be in the actual plane, et cetera, et cetera, et cetera. And then we put a multi-leaf on the aperture, and so you could shape the field in real time. And it just went from there.

So I have to tell you, when I was a first year fellow at Sidney Farber Cancer Institute, and I saw a patient who had received chest wall radiation-- not at our institution, by the way, not even in Massachusetts. She'd come from one of the other states. And basically, they had just stood her up in front of the machine and turned it on, as far as I could see.

And the amount of normal tissue damage that she had suffered from this was incredible. And I called your friend, Jay Harris, and said, is this what we do here? He said, no way. Had me come down-- he showed me the beginnings of their CT planning and that sort of thing. I didn't know [INAUDIBLE] at the time, but then I learned later, mostly because of your doing.

There were a number of outstanding institutions that were involved in this, and a lot of the inspiration for this came from some of the work that Sam Hellman was writing about, in terms of how we might better use imaging. So it was a team effort across the whole specialty.

By the way, you bring up Dr. Hellman. We just lost Eli Glatstein in the last few months. I'll give you an opportunity to say some nice things about him. I know that you worked with him, and he was a giant in the field.

The reason I was attracted down to the NCI is that this little short pudgy guy, Eli Glatstein, was recruited from Stanford by Vince Devita to come and run the radiation oncology branch. It was a pretty interesting time. There were five of us with Eli. All five of us became department chairs after our time at the NCI.

He was just a phenomenal individual. He gave you a lot of rope. You could either hang yourself, or you could do the work you wanted to do. And we accomplished a lot.

The other thing that I remember-- so I went to the NCI 1978. 1980, Eli said to me-- he handed me a piece of paper. I said, what's this? He says, it's an application form to join ASCO. You need to join ASCO.

So I said, OK. That's not typically what radiation oncologists do, but I'll join. He sponsored me. And then he said, I'm going to see if I can't get you on a committee. And he did. I was on early Grants Award Committee. We handed out five or six young investigator grants.

And I became chair of that committee. And then they said, well, you know, you did a nice job. We're going to put you on another committee, and way led to way. It was entirely because of Eli that I got introduced to ASCO and became such an important part of my life.

He was a giant and will be sorely missed by all of us. And that's a perfect segue into my last question, which is changing gears completely, and that is your career at ASCO. Give us some ideas of what ASCO was like in the late 70s and how it has evolved-- principally, I mean, I know that's a whole hour long discussion, but I think you've had such a huge footprint in the society-- and what you saw changed, and the important changes.

You know, ASCO was founded in 1964. There were no oncologists in 1964. There were doctors who were treating cancer-- some of them with surgery, some of them with radiation, some of them with these very early, highly toxic drugs. And so the society was formed.

And it specifically says, when you read the early writings about this by the founders, that this was not a society of what they called chemotherapeutists. It was a society of physicians who wanted to treat cancer. They brought together all of the clinical specialties.

I like to joke that the most interesting thing is that the medical oncologists forgot to found the American Society of Medical Oncology. They're the only specialty in medicine that doesn't have a specifically focused society just for them. They used ASCO, and to this day, it remains that way.

And so I got involved. And the leaders of ASCO in the 70s and 80s and into the 90s, espousing how wonderful their multidisciplinary work was. And they used to have annual member meetings at the ASCO annual meeting. And the board would sit up on the dais, and the peanut gallery would ask questions.

So I raised my hand, and I walked to the microphone, and I said, you know, it's great how you extol the multidisciplinary nature of the society. But I look at the dais, and I see the 12 members of the board of ASCO, and they're all medical oncologists. You are not practicing what you preach.

And I sat down, and they mumbled a few things. And then the next thing I knew, darn it, they created board slots for a surgeon, a radiation oncologist, and a pediatric oncologist. And then they said, all right, big mouth, now that you held our feet to the fire, we're going to run you for the board. And I did get elected to the board, and then, eventually, got elected president.

And then when they needed a CEO in 2006, they asked me if I was interested, and I interviewed for the job and then moved to Washington and then Alexandria and did that for 10 years. It was really-- you know, I say that I have been involved with two great organizations during my career-- the University of Michigan Medical School, and the American Society of Clinical Oncology. And to have the privilege of leading both of those organizations was just truly amazing.

Well, there are many more things we could talk about, but for our listeners, you should know there's an Allen Lichter Visionary Leadership Award and Lectureship held at every annual meeting now. And for those of you who attend meetings at our headquarters in Alexandria, you'll notice you're sitting in the Allen S. Lichter conference center.

Those weren't done by accident, by the way. They were done because of my guest today and all of the contributions he's made, not just oncology, frankly, but in my opinion, to medicine in general. As a dean, I know many of the things you've done, which we don't have time to get into.

So on behalf of our listeners, and behalf of myself, and behalf of all the patients who have benefited through your work through the years, thanks so much, Allen. [INAUDIBLE]

Dan, it was great being with you. Thanks for talking to me.

Until next time, thank you for listening to this JCO's Cancer Stories-- The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts, or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's Cancer Stories-- The Art of Oncology podcast is just one of ASCO's many podcasts. You can find all the shows at podcast.asco.org.

Listen to ASCO's Journal of Clinical Oncology essay, "People Like Us," by Dr. Stephanie Graff. The essay is followed by an interview with Graff and host Dr. Lidia Schapira. Graff reflects on her life experience as a female physician, farmer’s daughter, mother, and pie connoisseur to connect and help her patients get through a life-altering diagnosis.

TRANSCRIPT

Narrator: People Like Us, by Stephanie Graff, MD (10.1200/JCO.22.01835)

I was standing in the dining room on the 15-year-old burnt sienna carpet, so heinous that it could have only been chosen because it was on sale. I remember the afternoon light from the western windows falling across the oak dining table which matched my mother’s brusque, wooden tone. She remembers nothing. She does not remember saying the words that I have so

often replayed, pondered. I was stung by the interaction in a way that rendered me speechless, in a way I now recognize too often in my approach to conflict in adulthood: silence assumed to represent understanding, consent, or complicity.

Weeks earlier, this same woman drove all over our small town hoping to catch the mailman before driving to my track and field meet 30 miles away. I was waiting for word from the University of Missouri-Kansas City (UMKC) School of Medicine, and I think my mom was

as anxious to hear as I was. Conveniently, her brother (my uncle) was our mailman. When she arrived at the track meet, she handed me the large envelope proudly bearing the school’s logo in the return address. I tore it open sitting with my boyfriend on the bleachers, seeing my prayers answered in black and white before my eyes. There is a photograph of this moment, so I can describe perfectly what I am wearing: my royal blue and white track uniform, my sprinters spikes and—I am sorry to tell you—a neon green hair scrunchy. This photograph also proves, in that instant, my mother understood that what was unfolding was a milestone moment in my life. I remember asking her later when I discovered she tracked the mailman around town to get the mail what she would have done if I had not been accepted. She replied that she knew I had gotten in from the size of the envelope, so she never had to think about it. I like to imagine my mom also had faith in me that led to the wild goose chase for the mailman, even before she saw the envelope.

Within the envelope, in addition to the acceptance letter and glossy brochure telling me all about my wonderful new life as a UMKC medical student, was a parental consent form. The 6-year combined BA/MD program at UMKC was far from inexpensive, and, as a minor, I would need my parents to sign this letter stating that they agreed that we would pay the tuition. Of course, by we what was really meant was I would be taking out student loans to cover every single cent of tuition, room, and board. But the letter, with a DUE BY date ticking ever closer, had been sitting on our dining room table since the day the acceptance arrived, unsigned. My father signed things like this. Never my mother. My mother would not even broach the subject with him. Nice families in rural Missouri just do not talk about money or politics. So, there it sat, a white paper elephant in the room.

“Mom, when is dad going to sign my acceptance letter? The deadline is soon, and we still have to mail it back,” I pleaded with her that afternoon. She turned to look at me, en route from the dining room to the kitchen and said, “Stephanie, people like us don’t go to medical school.”

People like us? Who is this us? Women? Mid-Missouri farmers? People from small towns? Our family specifically? Poor people? I may forever regret not asking. I may forever regret that moment of stunned silence where I only wondered if she had just said no to my dream and considered my next move very carefully so as to not make it worse or potentially close a door forever. By the time I asked her, years later, what she meant in that moment, my mother had no memory of saying it to me. This innocuous phrase, “people like us” that haunted me for most of medical school.

Eventually, of course, my father signed it. Only a day or two before the deadline as my memory recalls. He sat me down and told me it was a lot of money and asked me if I was serious about this whole doctor thing. I assured him that the one and only thing I had ever wanted to be had not changed in 10 years, after a short-lived dream of being a country western singer and that it was unlikely to change now. Then, he had signed the consent, which I had taken immediately to

the post office before anyone could change their mind.

Yet, those words kept bubbling up. When I struggled with a test or subject, I wondered if people like us always had a hard time with organic chemistry or neuroanatomy. When my classmates talked about their exotic travels to tropical getaways or international hotspots, I sheepishly admitted people like us do not travel much. When patients assumed the female medical student was a nursing student rather than a medical student, I assumed that was just what happens to people like us. When I mispronounced something or exposed my total ignorance into the

broader process of step examinations, residency, the road to physicianhood, I figured it was just the sort of thing people like us cannot help.

Then one day, a patient newly diagnosed with melanoma shared with me that he was worried about how treatment would interfere with farming. “Well, what kind of farming are we talking about?” I probed. He raised cattle, had some corn and hay fields. “Oh really? What breed? How many head?” We fell into the easy talk of farm life, and he shared his current toils of repairing his tractor. When he left, his wife pulled me aside and confided, “It really is nice to know that his doctor is one of them.” When I start to write a prescription, I often stop to think about the cost, about how $20 US dollars is a big deal to people like us, and I talk to patients about what is financially possible, what help they need, what resources we have. One of my breast cancer survivors always framed her chronic lymphedema symptoms in terms of how much or how little it held her back from baking pies. We shared recipes of her grand champion state fair pies and my mom’s own grand champion pecan pie. I could understand the flurry of activity and pressure to bring your freshest, most beautiful pies to the fair because I shared that lived experience. Patients like this, one by one, started me thinking that maybe more people like us should be in medical school. I know the statistics for my own field of medical oncology, and few oncologists practice in rural areas, despite the community needs. I have no statistics for how many of my colleagues grew up farming or preparing for state fairs every summer. But, I have answered phone calls from my mom, asking advice about what aspects of farming are safe when you are neutropenic or how best to plan Moh’s surgery around harvest. People like us are necessary to fill those gaps.

As a woman in medicine, numerous women have reached out to me to ask me questions about the duality of medicine and mothering or the intersection of work and sex. My emails, text messages, and social media feeds are filled with threads on breastfeeding at work, daycare solutions, unique challenges in leadership for women, and advice on career growth. These conversations ring with the chorus of someone like me as we connect over similarities. My mom

recognizes this version of like me as well, handing out my phone number to women in the intervening years from my hometown applying to my alma mater or medicine in general. If community and connection with other women improves career experience for women in oncology, I am glad there are people like us.

And as much as I see a need in medicine for people like me, I also see all the ways I represent privilege—which of course means that there is ample space in medicine for people not like me. If the numbers of rural or female oncologists are low, the numbers of Hispanic/Latino, Black/ African American oncologists are startling. How can we collectively provide culturally and linguistically competent care if our workforce does not share the same diversity as our patients?

So, mom, 25 years later, I think we have both grown to understand medical schools need people like us, people like all of us. I think you have felt that as much as I have over the years in your own connections with doctors caring for members of our family or in the health questions you save for me. When I sit with a patient as their doctor, I am also there as a woman, farmer’s daughter, mother, writer, baker of pies, and so much more. Each time one of these versions of me creates connection with a patient or colleague, my care improves. Each of our unique gifts and experiences help us connect with our patients in ways both big and small. Medicine needs people like us.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we are joined by Dr. Stephanie Graff, Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University. In this episode, we will be discussing her Art of Oncology article, 'People Like Us.'

Our guest's disclosures will be linked in the transcript.

Stephanie, welcome to our podcast and thank you for joining us.

Dr. Stephanie Graff: Thanks so much for having me.

Dr. Lidia Schapira: It is our pleasure. So, I like to start the show by asking our authors what they are currently reading and would recommend to listeners.

Dr. Stephanie Graff: I am currently reading The Power Broker, which is kind of a funny book to be reading. It's obviously an older book, and it's the story of Robert Moses who famously, or infamously, perhaps, built New York City, and sort of wrote the power structure of city government or state government and politics in New York, and it's written by Caro and is a Pulitzer Prize winner, and I just have never read it. It's quite the tome, so it's hard to power through, but it's excellently well-written, and really insightful into political culture and the history of New York. So, I'm finally working my way through it. I'm not sure that I would recommend it for the average reader. I just finished The Sentence, by Louise Erdrich, and, Unlikely Animals, by Hartnett, and both were delightful reads.

Dr. Lidia Schapira: You are a gifted storyteller. I wonder if you could tell our listeners and share with us a little bit about your process and when you write, how you write, and what inspires you to write.

Dr. Stephanie Graff: When I write and how I write, I think the answer is, all the time. You and I may have talked about this before. I feel like writing is often how I decompress, and I find that I'm often writing in my head all the time. So, when I'm walking my dog, when I'm driving my car, when I have downtime, I'm sometimes turning over ideas or events and looking for the thread or the storyline there. I write poetry, actually mostly for myself as my form of journaling, or meditation, or rage, or sadness, whatever it is I might be feeling. And sometimes that then turns into something narrative, and that's a habit that I've had for a very long time, even as early as middle school and high school, it was a habit that I've always had.

In terms of then turning that into something narrative or publishable, I think that that's more of an ‘aha’ moment where an idea that I've been turning over for a while finally feels like there's a unifying theme, or thread, or a particular patient encounter, or a funny thing that one of my children said inspires it to become this sort of 360 moment that makes it feel more like thematic story that can be told.

Dr. Lidia Schapira: So, given your expertise with stories, and your appreciation of literature, and the fact that you've now lived in the world of Oncology for quite a while, what is your opinion of the role of stories and narratives in our culture and our approach to training others, and sort of sustaining that sense of vocation I think that drove us all to choose a specialty in the first place.

Dr. Stephanie Graff: Yeah. I think that story is so important for how we relate to one another, and how we relate to our patients because I think that, you know, if we're just talking to patients about a phase III randomized clinical trial and throwing at a patient a bunch of statistics, or metrics, or guidelines, it's not digestible, or understandable, or relatable. And so, being able to talk about what we do at the story is what makes that understandable, memorable, digestible for patients, but also for our colleagues, and our students, and residents, and fellows, staff, everyone that we interact with in our day-to-day experience. And so, I think that really thinking about The Art of Oncology, the practice of what we do day-to-day as parables, and stories, and looking for ways to turn that science, that data into little anecdotes is really so central to understanding.

Dr. Lidia Schapira: Let's talk about the story that you so beautifully wrote, ‘People Like Us’. Thank you for sharing that and sending it out to the world. I assume this is something that you've been thinking about for decades, and I, since you don't look like a teenager waiting for mom and dad's approval to go to med school.

You know a good story, Stephanie, I'm sure you agree, allows the reader to project into, and imagine things. And there were two big themes for me, and one of them had to do with the mother-daughter relationship. So, can you talk a little bit and share with us a little bit about that aspect of the story of the words that your mother said at a very tender age that sort of stuck with you and kept on giving?

Dr. Stephanie Graff: So, for those listening, the story is that my mom said to me after I had been accepted to medical school and was kind of waiting for my parents to sign the acceptance letter, I went to the University of Missouri, Kansas City six-year program, so I got accepted to medical school, straight out of high school. And because I was 17, they had to sign this parental consent in order for me to actually start. And so, this letter was like sitting like the elephant in the room on my dining room table for, I don't know, two weeks or something, waiting for them to sign it. And my mom one day, in a moment, that to her was, I mean, she doesn't remember it.

So, like to her clearly, it was like this nothing-passing comment, like, you know, "Pick up your shoes." She said “People like us don't go to medical school.”

And at the time, I was so struck by it, but I have no idea who this "us" was that she was referencing. And I have spent decades wondering, in retrospect, "Oh, why didn't I ask questions?" You know, my mom actually was this amazing hero to me in my childhood. You know, she was a Girl Scout leader, and I got my Girl Scout Gold Award, she created all these opportunities for leadership and engagement in my community. She taught Sunday school. She graduated high school but just has a high school degree. She never went to college herself, because she was actually told by her parents that girls don't go to college, that girls get married and stay home.

And so, though she wanted to go to college, her parents closed that door for her, and so she worked a factory job to earn extra money to help support the things that my siblings and I all wanted to do that, you know, kids' activities get pricey. Eventually, the factory job was physically demanding on her as she aged, and she ended up applying to become a paraprofessional in the schools, and so spent the second half of my childhood working as a para in our schools, which actually also ended up being a very physically demanding job. But really all kind of just out of determination and passion to create opportunities for us as children. So, in no way is this story meant to be a shot at my mom. She's been a really, really great mom. And again, she has no memory of saying this thing to me that has stuck with me so harshly, perhaps over the last several decades. But she said it, and at the time I was kind of like, "What does she mean by this?" I mean, obviously, I already had a lot of doubt about whether or not medical school was going to be right for me or if I was gonna fit in there, and for her to say that, I was kind of like, "Oh gosh, maybe people like me don't go to medical school."

And then as I entered medical school, medical school was hard. It was hard as an 18-year-old. I struggled in classes, there were lots of moments where my peers were just more worldly than me. They had traveled, they came from backgrounds where most of their parents-- I had so many classmates whose parents were both physicians, and so they didn't struggle with the language of Medicine, the career paths of Medicine in the same way that I did. You know, my mom's words just kept coming back - people like us don't go to medical school. It was something that just sort of kept coming up over my career.

Dr. Lidia Schapira: So, who are those "People Like Us"? Have you figured it out? I certainly enjoyed reading all of the possible spins of People Like Us - people who come from farm backgrounds, people who aren't rich and worldly, perhaps women. Who are these "People Like Us?"

Dr. Stephanie Graff: Well, at the end of the day, I think all of us are People Like Us because you know, if anything I've learned in my last 20 years of this, is that everybody has those feelings of self-doubt, and feelings like, "we don't fit in." And hopefully, those are coupled with moments of feeling like you do belong, and hopefully, everybody has a network of belonging. But we're all periodically thrust into times where we don't feel like we fit in, and we don't feel like we belong. And there's so much that can be drawn from those moments.

So, whether it's that you are from an underrepresented group, from your ethnic or cultural background, your socioeconomic background, your gender, your sexual identity, you know, no matter what that is, your parents' occupation, if you're the first person in your family to go to college, you are going to bring the tapestry to Medicine that helps us kind of richly relate to our patients in a way that's so cool.

One of my favorite studies that I've seen in the scientific literature is actually not an Oncology study, it's a Cardiology study that looked at patients presenting to emergency departments with heart attacks, and it was a gender inclusion study. And what it looked at is in patients that have heart attacks in the emergency department, if the cardiologist caring for the patient is matched gender, like a man caring for a male heart attack patient, they have a better outcome. But if that cardiologist has a partner that is of the same gender, so like if the male cardiologist has female partners, their care of female heart attack patients improves, and that patient's cardiac mortality improves, which was so fascinating that like just having a greater exposure to female cardiologists helped male cardiologists provide better care to female patients.

So, I do think that just gathering experiences of the people not like me, that surround me all day, help me relate better to my patients. There's certainly so many cultural celebrations, travel experiences, world celebrations, that I better understand through my classmates, peers, colleagues, friends, that I have encountered in Medicine, that help me connect and relate to my patients in ways that I previously didn't have access to. And there's ways that I'm sure me as a Midwestern farmer's daughter have helped my colleagues understand some of the things that our patients cope with.

Dr. Lidia Schapira: You make a brilliant case for diversity, and of course, for inclusion, which is something that everybody is really keenly trying to think more deeply about these days.

And that brings me to another question or follow-up, and that is the role of empathy in communicating with people who are not like you. One of the most beautiful parts of your essay, I thought, was when you take us into the exam room with a patient, and you're actually giving us some examples of how your lived experiences as a farmer's daughter allowed you to connect with people who work the land, or who depend on the land or women who bake pies. Tell us a little bit about that - the role of the connection with a patient, and empathy, and compassion in helping us create a more welcoming environment, both for our colleagues and for our patients.

Dr. Stephanie Graff: I think everybody has had that experience before where a patient asks us, as their Oncologist, if while they're undergoing chemotherapy, undergoing radiation, if they're still going to be able to like [insert their passion here]. You know, as I reflect over my lifetime of patients, I've had patients who are professional poker players. I had a professional accordion player. I've had figure skaters. I've had everything, right? And I don't know the first thing about professional poker, okay, I would be a terrible professional poker player.

But I could imagine what skills are needed to be a professional poker player and answer that question. But every once in a while, a patient asks me if they're still going to be able to do X, and whatever they fill in that blank is something that so deeply relates to my childhood experiences, that it becomes this bonding moment with my patient. So, some of the ones that I shared in the essay is a patient who spent every summer baking pies for the State Fair.

For those of you who don't know, at the State Fair, you can enter your pies, cookies, baked goods, canned goods, decorated cakes, pretty much anything you can imagine, breads, and they're judged, and the winner gets ribbons - red, white and blue, and grand champion, and reserve grand champion that come with cash prizes, it's bragging rights. If you happen to also own like a bakery, or decorate wedding cakes, for example, that's something that's then marketing material, advertising material for your company that you're the Missouri Grand Champion of wedding cake decorating for 2022, or whatever it might be. So, this is a big deal, and people in my community talked about it and joked about it. And you would, at the church picnic when you're picking which pie, you know whose pie was the grand champion pie.

So, she told me going into her chemotherapy, that it was really important to her that she could do the pies. We laughed, because my mom is the grand champion pecan pie baker for our county, and my mom makes a, pardon me, damn good pecan pie, I would say.  So, that patient and I spent a lot of time talking about how her pie baking was going. And I will say that the summer that she was on chemotherapy, she said that it was really fatiguing and hard for her. And so, that next year when it came time to pie season, she was really excited to tell me that like she entered two more pies than she had the prior year because she had that extra energy to like get up on the morning of the fair, and bake the extra pies, and spending all the extra time on making the crust beautiful. And I know what that's like because I've seen my mom get up at four o'clock in the morning to make a beautiful, perfect pie, and have it ready to enter at 8:00 AM when the fairgrounds open. That's so unique to perhaps rural Missouri, or the Midwest, or fair culture, and I guess probably not a lot of Medical Oncologists know what that's like.

I had another patient who was, when I was still early in my career and was caring for things other than just breast cancer, who had a melanoma, and his wife asked me a lot of questions about how it was going to impact his farming. And we had this really lovely conversation about what kind of farming, and how many acres he had, and how many head of cattle, and what crops, and they were shocked at the depth of my knowledge about farming, and my ability to answer their questions in detail about what would be safe, and what would not be safe. And when they found out that it's because that's what I was raised doing, and that's what I did when I went home on weekends to visit my family, it was help out on the farm and do many of the same things that we were talking about. They saw me in this completely different light. Then they had seen me as this high-heeled wearing, white coat dawning Medical Oncologist, and it, I think helped them feel so much more comfortable in their cancer treatment, knowing that I understood where they were coming from.

Dr. Lidia Schapira: I have to ask you this question. Have you shared the essay with your mom?

Dr. Stephanie Graff: I have not shared it with her yet. I will when it comes out in print.

Dr. Lidia Schapira: What do you think her reaction will be?

Dr. Stephanie Graff: I think that she'll think it's lovely. We've had this conversation about how annoyed I am that she doesn't remember saying it, and how -- I guess it's weird because, you know, she said it and at times in my life I would say that it was hurtful that she said that people like us don't go to medical school, and that probably is the right language at different time points. I don't know that today I would describe it as a hurtful comment because I know what it was. It was just words that came out of her mouth whilst she was busy doing 100 other things, right? She doesn't remember it for a reason, which is that it wasn't a big commentary on me, or my life, or my choices. It was just words coming out of her mouth as she was going from one thing to another. So, I don't think that she'll find any hurt, or ill will in it at all.

Dr. Lidia Schapira: She may respond with a comment about what it's going to be like for you when you're in that situation with perhaps your children, and perhaps, at that point, make a comment that to you, may be forgettable, but makes a deep impression and a lasting impression in their young minds.

Dr. Stephanie Graff: That's actually something that I've spent a lot of time thinking about, both as I reflect on the comment, and, you know, at the very beginning of this, we talked about when I'm writing, and I said, always. I think about that comment a lot in the context of so much that I do - in my own parenting with my children, things that I say to them, and how those words might impact them. Things my husband says to them, and how those comments might affect them. But also, in the larger work of DEI, and how "jokes", or jabs, or sarcasm, things that aren't necessarily meant as true, can cut wrong. And that's why we have to be thoughtful, and careful because you never know who is listening, and how words are going to hit somebody on any given day.