Cancer Stories: The Art of Oncology

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.

TRANSCRIPT Listen to ASCO's Journal of Clinical Oncology essay, "Cemetery Rounds" by David Steensma, a hematologist-oncologist in Boston. The essay is followed by an interview with Steensma and host Dr. Lidia Schapira. Steensma describes the complex emotions that result from encountering graves of former patients on walks through a cemetery in his New England hometown. Narrator: Cemetery Rounds, by David Steensma, MD, FACP In the summer of 1784, the body of a 4-month-old infant named Sally was the first to be laid in the earth of the hill next to my home. The gravedigger's backhoe still cuts into the ground about once a week in what has become the largest cemetery in this Massachusetts town. During the recent pandemic, the graveyard was an open place with no need to wear a mask, so I often walked its quiet paths in the evening to stretch my legs after long hours hunched over a computer. These unhurried ambles were a chance to reflect on the day's events and make plans for future days—and sometimes to ruminate on life and how it ends. Little Sally's simple slate marker, with a willow and urn carved above the names of her parents and a short, grim epitaph—"A pleasant plant, a blooming flower, Cut down & wither'd in an hour"—has been joined by thousands of other tombstones over the past two centuries. After a dozen years living in this Boston suburb, I now recognize some of the names on these memorials: Stones that mark the final resting place of people who were once friends or fellow members of the same Congregational church that Sally's family belonged to long ago, and stones with surnames shared by nearby schools and streets. There are too many gravestones that recall young people who were once classmates of our children in the town's schools. Walking past those memorials means remembering moments of shock and sadness: news about car wrecks and ski accidents, suicides, sudden collapses on hockey or football fields, and the other disasters that take the lives of the young. Stones for the 21st century children are all in the newest part of the cemetery, with its memorials for those who died within living memory. In that part of the cemetery, visitors still often leave toys, Boston Bruins or New England Patriots pennants, lacrosse sticks, and horse reins. Sally's stone, in contrast, is the oldest part of the cemetery. It is surrounded only by close cropped grass and stout trees. Once I saw a freshly cut flower laying on Sally's grave, and I wondered who left it. It is rare to see those ancient graves get special attention—a bracing reminder that no matter how bright our star might shine in our own era, we will all eventually be forgotten. The largest and most prominent gravestone in the cemetery recalls the grandson of a local eccentric. This boy drowned in New Hampshire's Lake Sunapee at age 17 while trying to save another teenager who had fallen from a boat. It was the second time a close family member of the man had drowned: In 1893, as a child, he watched his older sister slip beneath the swift water of the Annisquam River. He reacted to this pair of tragedies by declaring a lifelong war on gravity. Grief is not always rational, although it may be productive. The eccentric man became wealthy—by predicting the 1929 stock market crash and by starting a successful business analysis firm—and he created a well-funded private foundation to understand and combat gravity. This Gravity Research Foundation sponsored important conferences attended by Albert Einstein and other luminaries and awarded prizes to Stephen Hawking, Freeman Dyson, and a half-dozen Nobel laureates in physics. Gravity, however, remains unconquered and incompletely understood. All of us will eventually be pulled into the earth by its unrelenting grip. A growing number of gravestones bear the names of people who were once my patients at a Boston cancer institute. Some days it is hard to see those stones on my evening walks, noticing name after name that once graced a clinic schedule or hospital rounding list, and to be so starkly reminded of how our best efforts ultimately failed them. Most of the time, though, what I recall are the happier moments with these patients, which keeps these walks from being morbid. Cancer centers are not known for being joyous places, yet surprisingly, often there is laughter in clinic rooms or on morning hospital rounds. We oncologists celebrate milestones with our patients: remissions achieved, college degrees completed, new grandchildren, and long awaited weddings attended. We know that graves like these await all of us, but for a while, we can put that aside and not just live but thrive. In one corner of the cemetery, a small marble bench faces a stone that marks the final resting place of one memorable former patient: A young woman with a wicked sense of humor who, as a grieving relative said at her funeral, was wise beyond her years, and taken before her time. When I rested on that bench last night, I was reminded of what French vascular surgeon Ren´e Leriche wrote in 1951, at the end of his long career: Every surgeon carries within himself a small cemetery, where from time to time he goes to pray-a place of bitterness and regret, where he must look for an explanation for his failures. For me that cemetery is a physical place as well as metaphorical. Yet when I think of her, I always smile, remembering who she was, and the happiness she brought to those around her. When she was alive, her hospital room was a place of laughter and hope rather than bitterness and regret. Even after a long day in the clinic, when I made hospital rounds in the evening, it was a joy to see her and discuss the events of the day. I do not know how she kept it up for so long in the face of so many disappointments and frustrations. Everything we tried to treat her cancer eventually failed her—every antibody, cell therapy, and drug after drug after drug. Even when new treatment regimens were declared at national meetings to be active, well tolerated, and worthy of further study, she always seemed to be one of those who had not responded or who suffered intolerable side effects. One door after another closed so that soon the only available doors were the ones that took her back home, with the support of a kind and skilled hospice team. At times, she could sense my sense of failure as I sat by her bedside and would try to reassure me as if the sorrow was mine instead of hers. It's all right, it will be OK. We did what we could. You did what you could. Now it's time to move on. Where did she get the strength? Eventually, as evening turned to night, it grew cold in the cemetery. I moved on, buoyed by her memory. Saying good night to Sally, I headed home. 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. David Steensma, who currently leads hematology early development for a biotech company in Cambridge, Massachusetts, and was for many years a faculty member in the Leukemia Program at Dana-Farber Cancer Institute and Harvard Medical School, and also a past Editor for Art of Oncology. In this episode, we'll be discussing his Art of Oncology article, "Cemetery Rounds." Our guest disclosures will be linked in the transcript. David, welcome to our podcast and thank you for joining us. Dr. David Steensma: Thank you for having me. Dr. Lidia Schapira: I'd like to start by asking you a little bit about your process for writing. You have published beautiful essays in JCO and in other venues, and I know you've always been a writer. Talk a little bit about that, especially for some of our younger listeners Dr. David Steensma: This is the first article that I've submitted to the Art of Oncology in a number of years, actually, and this one was a long time in gestation. One of the things that I found over the years is that whether I'm writing and how much progress I'm making is a really good barometer of where I'm at mentally. And I think the fact that this took the better part of three years to write probably illustrates how difficult these last few years have been for me as they have for so many of us. Sometimes writing happens very quickly. You get a germ of an idea, something maybe you've been mulling over for a long time and it all falls into place. But much more often, it's a process in which one is trying to express what is very difficult sometimes to say appropriately. Dr. Lidia Schapira: Some of your articles, including this one, have elements of history in it, and I think that's something that you've always been interested in, not only medical history but history in general, sort of what was happening at a time when somebody was ill or an illness was first described, or in this case, people were buried. Tell us a little bit about that, about combining your interest in history with your medical writing. Dr. David Steensma: I think I like to tell stories and really always have. If I didn't do medicine, one of the other two alternatives was journalism. And I've always been interested in how things got to be the way that they are. So I think that naturally is reflected in the writing. Dr. Lidia Schapira: I know you're also an avid reader, so what would I find now on your night table or on the desk alongside the medical journals that probably are unopened? Dr. David Steensma: Wow. I have some science. I have Ed Yong's amazing book about the microbiome. I just started reading I'm Glad My Mom Died by Jennette McCurdy, a former child actor, which has just got rave reviews, so reading about her difficult upbringing in this memoir and her mother's death from breast cancer. And so the third one over on the shelf over there that I have off is ASCO-SEP because I'm doing the 10-year medical oncology board renewal next week. I've been doing the LKA for hematology, but I've also kept up MedOnc and internal medicine. It was just too painful to think about all three. So I have all these NTRK and ROS1 inhibitors and pathways for advanced cervical cancer jumbling around in my head right now, which I'm sure a lot of our listeners could relate to. Dr. Lidia Schapira: I can relate to the anxiety I felt the last time I was recertified, and I swore it would be the last time. So thank you for spending a little time with us. Maybe it's a distraction from the other. Yeah. I wanted to talk about "Cemetery Rounds." We were so happy to get your paper after all these years. A reviewer said, "Oh, thank goodness, Steensma's writing again." Tell us a little bit about this quiet, meditative practice of walking along the cemetery near your home, especially during the pandemic. Dr. David Steensma: Well, the pandemic did so many weird things, and just everything was different, from the way we bought food to the way that we caught up with loved ones to the way we structured our days. Everything changed, and one of the things we ended up doing was spending even more time in front of our computers. And I'm kind of fidgety, always have been. So by the end of the day, I'd had a lot of energy I needed to get out and thought about where I could walk nearby that was a good place to stretch my legs. And we lived right around the corner from an old cemetery and quite a large one, a cemetery that actually got quite busy during COVID, so I didn't really think about that part of it. But they brought in at the beginning of the pandemic, all kinds of extra materials for digging graves and cleared out some additional area. It was really quite striking just seeing that happen. But one of the things I think I didn't prepare myself for mentally, walking through that cemetery, which is a beautiful place, very respectful, and well kept, was how many patients and other people I would recognize. And just walking past stone after stone with names that I recognized, people who had been my patient or those of colleagues that I'd interacted with on inpatient services over the years, a number of children who had been our kids' classmates in the town's public schools and who had sadly run into one tragedy or another. It was really quite striking how many of the people I felt like in a very old cemetery, how many names I recognized. There were a lot, of course, I didn't, but their surnames were on the streets nearby and the town founders. And this sort of made me reflect, particularly when I noticed that we don't normally see our patients' graves. We may attend their funerals or their memorial services, but even that often the last time we see them is when they're going home to a hospice setup or to an inpatient hospice or sometimes just at a last clinic visit, and then something sudden happens. So this seemed like something that could have been very sad. But I think partly because of the tranquility of the place and the mindset of the pandemic, there was actually a lot of reflection of positive things, interactions with these patients - the happiness sometimes that we brought to each other, conversations that had been difficult, but also events that have been happy milestones that they got to see because of our care. And then also the hard realization that ultimately modern cancer care failed them that's why they were there. So just a lot to reflect on in a time when it seemed like death was all around anyway because of the pandemic. So I thought, gosh, this would be something I think people could relate to. Dr. Lidia Schapira: It struck me that you describe your approaching these gravestones as an intimate space that we normally don't get to be part of, that sort of belongs to the family and the friends and the community, but the clinician is often not there. And it struck me also that the immediate thing you talk about was how therapies have failed them. And I just wondered if you could talk a little bit more about that. Maybe because we're both part of the same culture, it's so easy immediately to think that we did something wrong and that's why they ended up there. But can you reflect a little bit more about that particular aspect of our work? Dr. David Steensma: Yeah, just because an outcome was sad doesn't mean that mistakes were made, but may reflect the limitations of the science and art of medicine as they currently are. I think surgeons wrestle with this a lot. And in fact, I included a quote in the essay by Rene Leriche, a well-known French vascular surgeon in the 1950s, who talked about how each surgeon has their own personal cemetery of a place that they go to reflect from time to time. And that's something that in M&M conferences I was always shocked as a student and trainee just how brutal they were on each other and on themselves. It's part of this surgical culture. But I think surgery naturally lends itself to thinking that somehow you did something wrong. And perhaps in medicine, we're a little bit more in touch with the fact that we followed the guidelines perfectly. We got advice from colleagues, patients were presented at conferences. We enrolled them in clinical trials of things that seemed interesting and promising and just that the disease just kept coming back. And so that's not necessarily a personal failure. And I think in that circumstance, there's maybe a little bit more space, a little bit more permission to connect with the memory of that person in a positive way and reflect on who they were and what they meant for their families and for the others that they interacted with. And so when I see these stones, I don't think, "Oh man, I really screwed up, and that's why they're here." Never, never. I think about, "Gosh, we tried so much, and he or she went through so much, and yet this was where they ended." Dr. Lidia Schapira: It seems to me a very healthy approach, certainly. And I loved the surgeon's quote here in the essay, that every surgeon carries within himself a small cemetery, not just the surgeon. I think, as you said, we do as well. I also love the framing of the fact that it's not so much guilt but sorrow that we carry for them and also that they affect our lives. I remember when you talked about your patients, I remember the article you published about Michaela, the little girl who played the cello on the Leukemia ward and got to be famous. And in this particular article, you talk about a young woman who somehow seemed to think that she needed to comfort you and reassure you that you did everything that you could. Those are such beautiful memories, and you have such a talent for sort of paying tribute to your current and past patients that this is really so beautiful to read. And with that, I just wanted to ask a personal question, if I may, and that is, do you miss the clinical work? Dr. David Steensma: I do, definitely. So, yes, I am always impressed by the strength of patients and of their families often, and people manifest that in different ways. But I've just seen so many amazing things over the years. When I decided that I wanted to try to influence cancer care and hematology care in a different way and move to direct hematology and early development in a research institute affiliated with a company, I, unfortunately, had to step back from seeing patients at Dana-Farber because it was considered a conflict of interest. It hadn't been until just a few months before but, you know, new rules. So I do miss that. And I've been thinking a lot about ways to get back to making those connections because, yes, it is meaningful to be developing new medicines, but there's something also very immediate about being there for a person in a time of need. And those relationships that you build, by far, that was the hardest part of making the job transition with so many patients that I had long-term relationships with; that was hard. Dr. Lidia Schapira: So my last question is more philosophical. I am teaching a course for undergraduates that involves explaining how people experience illness. So I've been reading a lot of illness memoirs throughout my career, and I was looking for scholars who had worked on this and found, of course, Arthur Frank and his themes of how illness is portrayed by patients, stories of shipwrecks and catastrophes or quests or restitution of meaning. And I wondered if you had given any thought to the same sort of narratives that oncologists play in their heads of how they treat patients. What do you think are the most important themes in the way oncologists think of and remember the patients they've treated? Dr. David Steensma: One of the things that's special about oncology is that even though it's a profession that is very much scientifically based, that we connect with patients at a point in their narrative and often get to know them over months, years, and that narrative and who each of us is along that journey change over time. So I think that's what makes our field really compelling. At least it was very attractive to me. That's very much true. I think of other fields as well, where you do have longitudinal care of a patient, but there is something special about a cancer diagnosis and what that makes people think and how their families and people around them react. That I think, is unique. It really is an honor to be with patients through this narrative, and Arthur Frank has written about that and about the sort of patient story and how that evolves. And I think that's a healthy way of thinking about what people go through. And we also have to remember it's their story that we're fortunate to be able to witness. And when you walk past a tombstone, you know maybe a little bit about how that story ends, but there's always a birth date and there's a death date, and there's a dash in between, and we know very often very little about that dash. Maybe we were a little part of it, but that encompasses their whole lived experience. Dr. Lidia Schapira: I think that's a beautiful way to end this. I tend to think of us when we're in our clinician roles as co-editors of that story if we are invited to play that part, and that's such an honor and privilege. David, thank you so much. I hope and ask that you please continue to write. We all have so much to learn from you. 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 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: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. David Steensma is a hematologist-oncologist in Boston, and formerly long-time faculty member in the leukemia program at Dana-Farber Cancer Institute and Harvard Medical School. Additional Reading: A Cello for Michayla, by Steensma

Listen to ASCO's Journal of Clinical Oncology essay, "A Labor of Love" by Dr. Rebecca Kowaloff, a Palliative Care Attending at the University of Massachusetts. The essay is followed by an interview with Kowaloff and host Dr. Lidia Schapira. Kowaloff shares how she connects and supports young patients and families at the end of life. TRANSCRIPT Narrator: A Labor of Love, by Rebecca Kowaloff I had always thought that I gave too much space for death at the bedside of my patients. More than most of my medical colleagues, I seemed to accept its inevitability and had learned to talk about it, to watch it, and to sit with it. I did not cry, even for the patients robbed in their middle age by cancers sucking their life from within, aging them in hyperspeed before my eyes. Why did the weight not feel heavier to me when so many around me seemed unable to carry it? Despite the frailty of his body when we met, caring for Michael showed me my strength. He was a 25-year-old investment banker on Wall Street when he was diagnosed with a rare sarcoma. I wondered what he was doing the moment that first cell divided. Was he working late, handing a $100 tip to a taxi driver as his father said he sometimes did, or practicing with his college soccer team? Was this disease written into his genetic code when he was traveling the world with his family, smiling with missing teeth on a dock in Egypt in the pictures his father showed me? Did his body know it would have only 29 precious years, making him so generous to strangers, so thoughtful of others, and so eager to experience life and travel the world? I am sure he was full of hopes and dreams that shattered at the moment of his diagnosis. Amid the onslaught of emotions at diagnosis and as various chemotherapy regimens failed him, he started a foundation for sarcoma research to leave a legacy of helping children with similar rare tumors. Outside the hospital, we would almost have been peers as I was less than 10 years older and could imagine the assumptions he would have had about his life would be similar to my own. Suddenly there was no meeting a life partner, no wedding, and no children. There was no career advancement, no retirement trips, and no new hobbies or interests. There are books that will go unread and current events unexperienced. The world which had been expanding at a spectacular pace suddenly contracts to one person's orbit: family, close friends, and what dreams can be realized on a shortened timeline in a perhaps newly limited body. He moved from New York City home to his mother's house, returning, in some ways, to childhood. His soft-spoken mother listened to my prognostications with grief but not surprise, and my heart ached and eyes welled as I thought how she was watching her baby die. Each night on my drive home, I wept for her. When she saw him walk for the first time, she must have wondered what sports he might play. When he spoke for the first time, she might have wondered what conversations they would have, what speeches he might give, what school plays he might perform, and what songs he might sing. Like me she might have imagined cheering him on in sports, dancing with him at his wedding, and holding his children. She had watched him forge a path onto Wall Street and earn the friendship and respect of teammates on ever more advanced soccer teams. The sadness of her first child leaving home for college had surely receded as he self-actualized into a thoughtful, well-liked, and successful young man. And then came the diagnosis, and she watched all that her son had built slip away, watched him cling to as much normalcy as he could as the sarcoma ate his legs, sank his eyes into his skull, and sucked the color from his still-thick hair. His father appeared one evening almost a month into his hospital stay with the desperate questions of a parent who has been in such deep denial he had not even told his brothers back home about Michael's illness. In a power suit, he blubbered that he could not live without his son, his "light," and begged me for fantastical treatments to fix him. In a tiny windowless meditation room, I rode the waves of despair with him. I explained over and over why our best efforts were no match for Michael's cancer. Michael and I were practically peers and yet he entrusted me to lead him into this deep dark forest of the unknown, his final journey. Most times when entering his room I thought he had begun to "transition," his eyes half closed, his skin so pale and translucent, and his body so frail. One morning, I sat next to his bed and gently told him he was not improving, his lungs were failing, and I could not, would not, recommend intubation, which seemed imminent. He protested, asserting from behind an oxygen mask that he felt he was improving. He talked about physical therapy and restarting the treatment that had led him to this hospitalization, that had finally failed as he had always known it eventually would, but which was his last hope. His denial was his last defense. I met him where he was, shared his hope, but held fast to reality, framing the decision not as a choice he had to make, but as a recommendation from a trusted physician and an acceptance of his body's truth. He agreed, do not resuscitate, do not intubate. He thanked me and asked why I was the only honest one on his team. When we entered the room to recommend against a BiPap bridge to nowhere, his father tried to block the painful conversation with his body and his pleas "No, please, I don't want him to hear this!" I sat at Michael's side, completing an arc of love and care with his mother, sister, and nurse, and put into words what he knew and was living. His answer broke us all, "Done." This one word, said with surprising strength and finality, felt just as defiant as all his previous optimistic phrases, although it was an acquiescence to reality. To his end, Michael directed his care and made his own decisions, and he made it clear that he was finished with cancer before it finished him. For the first time ever, I sobbed at the bedside. I told Michael I would never forget him and what an honor it had been to care for him. The only response he could muster was, "Likewise," which will live inside my heart forever. His mother, pregnant with grief for 4 years since his diagnosis, began her labor of loss, the painful, arduous separation of child from mother. His breathing became more labored, more erratic. Eventually his consciousness shifted beyond the scope of the room. Had his eyes been open, I know I would have seen the look that I have come to identify with those on the precipice of death: Eyes beginning to glaze, one foot in this world, one in the next, looking beyond us. There was no more color to drain from his face, his translucent skin draped across the angles of his frame. Finally, 3 days later, he returned to that from which we all come into being. The pictures at Michael's funeral were interchangeable with my own from my childhood and college years. The lost tooth photos and pictures taken in friends' swimming pools, huge grins on family vacations in the woods, or in front of monuments. I could almost hear the raucous whoops of a soccer team celebrating after a game and could hear the giggles of posing teenage girls with boys jumping exuberantly and mischievously behind them. The red-faced newborn peering over his mother's shoulder and the toddler posing in overalls with his baby sister were similar to pictures of my own son. His childhood snow suit was tacked to the wall next to his college jersey. He was every mother's child. His college soccer coach in the funeral receiving line commented on how hard my work must be. I thought back to weeping at the bedside with his family and nurse. I thought back to Michael's bony hand reaching for mine on the bed as I walked him through a symptom management plan and his reassurance that he trusted me to keep him comfortable. I recalled sitting outside his room with his father as he cycled through despair, gratitude, and nostalgia while looking through the pictures he kept close to his heart in his suit jacket. My heart was full of awe at the unbelievably precious opportunity to enter someone's life and family at such an extraordinarily raw and sacred time. I was full of gratitude to be able to join that journey as a human being, sharing sadness and honesty and, thankfully, hopefully, being able to bring some small measure of comfort. I responded, as usual, "but it's so rewarding." Driving from the funeral, I thought about his family returning home after the last acquaintance had left the funeral home, with the distractions of planning a service, choosing a casket, and greeting mourners while sharing anecdotes over. Like returning home from the hospital with your first newborn, their lives had irrevocably changed. New parents must adapt to a new presence, a new being in their life. They must make space for it. Michael's family now had to adapt to the absence of a presence. Like a new mother's first discovery of stray burp cloths on the couch and tiny socks stuck in the recesses of the washing machine, they will be caught off guard by his chapstick tube left behind on the coffee table and his half-read book left beside his bed. Caring for Michael showed me that my strength to be present for and bear witness to these difficult deaths is my humanity and my presence. I understand that I do not feel consumed by the heaviness of the work that I do because I distance myself from it, but because I sit with and bear witness to the human experiences, recognizing that doing so is my greatest gift. Becoming a mother changed my practice in a powerful way. I now recognize that every patient is somebody's baby. Many of the mothers who no longer recognize their children once looked at them with an all-consuming maternal love. I return to Michael's bedside in my mind as a way to dip back into my humanity and a grace that is not accessible in everyday life. There are no medications or procedures that will lessen the pain of loss or fear of death, and we in palliative care have only the feeble tools of medicine at our disposal. Michael's story reminds me that in the end, the greatest tool we may have to offer is love. 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 Shapira, associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Rebecca Kowaloff, Palliative Care Attending at the University of Massachusetts. In this episode, we will be discussing her Art of Oncology article, "A Labor of Love." At the time of this recording, our guest disclosures will be linked in the transcript. Rebecca, welcome to our podcast and thank you for joining us today. Dr. Rebecca Kowaloff: Thank you. I'm excited to be here. Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing. Are you the kind of physician who writes and has always written, or is the process a difficult emotional experience? Do you write for pleasure, or was this a one-time piece for you? Dr. Rebecca Kowaloff: This is actually a new thing for me, but I think it will become something I do more regularly. I've always enjoyed writing. I was a history major in college. I loved writing papers, but more creative writing is new to me. But since I started my current job and went into full-time palliative care, I've just been struck by some patient stories and found myself sitting on my computer after seeing them, and these stories just poured out. Dr. Lidia Schapira: And when you talk about patient stories, I imagine those are patients that you've cared for, or are you referring to writings from patients, what we generally call illness narratives? Dr. Rebecca Kowaloff: No, patients that I've cared for. Dr. Lidia Schapira: And how do you think that understanding the story of a patient can inform the work that we do and how we teach our trainees? Dr. Rebecca Kowaloff: That's a good question. I think that we sometimes lose a patient's humanity when we're caring for them and their disease and getting caught up in treatment options. And I think remembering that they have a story, that they are an individual and not like any of the other patients who might have had a similar diagnosis, helps us bring back to giving them the best care, but also, I think, brings us back to why we went into medicine. And that's what I try to pass on to trainees that I work with. Dr. Lidia Schapira: That's so important. So in a way, it's connecting with or rekindling that sense of vocation, and that has to do with being of service, but also being attentive to the humanity, our own as well as that of patients. Dr. Rebecca Kowaloff: Exactly. Dr. Lidia Schapira: Have you recently read any books or stories that you found particularly impactful or that you would want to share with colleagues? Dr. Rebecca Kowaloff: Yes. As I thought back to some of the books that I've particularly enjoyed recently, I think that that sense of story and the story of maybe the common person or I really like historical fiction, so characters that are in textbooks, that are sort of uni-dimensional, being brought into a more three-dimensional arena, are ones that I'm really drawn to. I really liked City of a Thousand Gates by Rebecca Sacks, which looks at the Palestinian-Israeli conflict through multiple lenses and really challenges readers to see multiple perspectives. And I think that's something that I'm really drawn to in the books that I like. Another book that I really enjoyed was called The Five, and it was a look at, actually the five victims of Jack the Ripper, but looked at their lives and who they were as people. Something that I was embarrassed to say I hadn't really thought of before, but I found it fascinating not just to learn about them, but to really think about, they had their own stories, and instead they were caught up in this larger narrative. Dr. Lidia Schapira: Let's turn our attention to the essay that you beautifully wrote and said and has a title that I think needs to be unpacked a little bit. So let's just start with your choice of title. It mentions 'labor', and there's a strong theme in the essay of the labor associated with childbirth, but also the labor associated with losing a child. And you bring in your personal experience of motherhood. And then the other important word in the title is 'love'. And that doesn't often appear in a medical narrative. So tell us a little bit about how you came to put these two words together and present them in the title. Dr. Rebecca Kowaloff: I've always been struck by the way that birth and death mirror each other and that on either end of those is this unknown we come from, wherever we come from, into consciousness, and then we leave into another realm that we always are wondering what's on the other side. So they're both this sort of liminal space between whatever lies beyond and then this life. And then in this particular case, I was really struck by how I was seeing this case, particularly through his mother's eyes, and was able to, I think, really appreciate a level of maternal love that I hadn't before I became a mother myself and what that must have been like for her and feeling it a little bit myself by proxy. And then recognizing that in this particular case, I felt like she had known that this death was coming for a while. The way that pregnancy, you know, that there is a birth coming and then the labor is that separation of the mother and the child. And so I tried to kind of draw that out as well, but I felt like love was what I really felt permeating this case—felt for this patient. Again, sort of that maternal feeling, but also because we were similar in age, a feeling of connection on that level, and that love was really the biggest thing that I could bring to this—that I can't fix death, I can't fix loss, but just being present with love is something I can bring. Dr. Lidia Schapira: I want to go back to that because you use the word love so organically and yet it's been a word that we've been reluctant to use in medicine. I think that there is no question that a mother feels love for her child, but the idea that a palliative care physician or an oncologist feels love for their patient is something that we don't often talk about and yet you're perfectly comfortable with that. So I want to ask you to tell us a little bit more about that because at least in my generation when we were trained, we were cautioned and perhaps even warned not to speak of love when we talked about what we felt for patients. And as a result, I think the medical literature is full of words like caring, but really the sentiment that we're talking about is love. And you very organically and normally basically say it like that and that you brought love to the bedside and that you felt love. Tell us a little bit about that. Dr. Rebecca Kowaloff: Yeah, I think you're right. We use words like compassion, empathy, caring because love is such a charged word. But I think if we can think of it as love, then it maybe becomes easier because we've all experienced love, I think, and hopefully felt love. It may be, again, give us that renewed sense of purpose to say that I just have to be a human being who feels love and that is something that comes naturally to human beings when we see others in distress or sorrow or whatever it may be. I think that makes maybe this work more accessible, more fulfilling. And I think it is what we feel and we just are afraid to use the word sometimes. Dr. Lidia Schapira: In this particular case, Rebecca, you also talked about identifying with a patient in so many different ways. You say, we could have been friends. So you talk about him as a peer, as somebody that you felt some feelings of companionship towards, and then you also talk about him as his mother's baby. And I thought that was really a beautiful and very original way of presenting the complexity of the feelings you had. You write in your essay that you normally don't weep or cry at the bedside, but there was something about this particular bedside situation, and Michael in particular, that led you to weep. Can you share a little bit of what that was like for you? Dr. Rebecca Kowaloff: Yeah, I think I had been, as I say in the piece, thinking of this as his mother watching her baby die. And that is, of course, an incredibly emotional concept for any mother. And then when he came to terms with it himself, I think it was tears of relief that he was not accepting, but at least he was acknowledging, but then also in terrible sadness that here, indeed it really was happening and that she was watching that happen. I was glad that that came out, not only for him and his family to see that I was there with them in that emotional space, but it just felt very cathartic to let those tears that I'd been letting out in the car actually come out at the bedside but just also to know that that was possible for me to do. And that just felt very connecting to the patient and their family. Dr. Lidia Schapira: And I imagine it might have even felt freeing for you in the sense that you bring your genuine person to the bedside and that you can allow yourself to connect and express your own emotions without that necessarily distracting them from their sorrow or drawing attention to you or in any way diminishing your expertise in that setting. Dr. Rebecca Kowaloff: Exactly. In palliative care interactions, I teach my trainees that if the people don't cry that we may not have gotten to the heart of the issue. And so I think tears are a sign that someone is their most naked, vulnerable self and that you know that you're interacting with them without any facade. Dr. Lidia Schapira: So tell us a little bit about how you, if I can use that word, either calibrate or regulate your emotional response to patients. You get called in to help families in very vulnerable and desperate situations. You use the word sacred. You use the word raw in describing what those situations are like. Tell us a little bit about how you prepare and what it takes to be fully present. Dr. Rebecca Kowaloff: I think I just walk into each visit knowing that I bring my presence and that that is perhaps what is most required of me, that I have no advice to offer or guidance, but really just being a human being who doesn't look away from suffering is what I'm probably going to bring most to every situation. And that's something that I just know that I can do. And I think that knowing that I can bring that and that I can look at death and illness and I have made it through with patients and that they appreciate that is what keeps me coming back and keeps me able to do that. And as I said at the beginning of the piece, I've always wondered, is it a coldness? Is it a distance? Why is it that I don't weep more often at the bedside? Why is it that I can just keep doing this work and it doesn't wear me down? And I think it's because my perspective on it is that it's so fulfilling and that it is sacred. I describe it as soul-fulfilling work. It's just my soul work. It is almost a transcendent spiritual experience to be able to convene with patients on that level and to be able to bring that level of humanity to the bedside when maybe that is something that they haven't gotten. Dr. Lidia Schapira: I found the description of Michael's father and Michael's mother particularly compelling and how you handled their very different emotional responses to the inevitable passing of their very young and beloved son. Have you stayed in touch with the family? Dr. Rebecca Kowaloff: I haven't, and I've actually thought about that and wanted to actually share this piece with them. So I'm still deciding. I think I probably will. I actually did connect with a friend of theirs and I didn't tell her I'd written this piece, but I wanted to give them some space. This death only happened very recently, so I wanted to give them some space to process and I didn't want this to become about me or what I got out of it. I really wanted them to have the space to grieve, but I very much would like to reconnect with them. Dr. Lidia Schapira: You share a lot about yourself in this essay and I think that's wonderful. And I'm curious to hear how you use these stories and your personal story when you teach your residents or when you interact with oncology fellows since that's sort of the world that most of our readers know. Dr. Rebecca Kowaloff: I always try to be a person. You look at attendings and they seem like they know exactly what they're doing and they've been doing things forever. And I want my trainees to know what I wish I'd known when I was a trainee, which is everybody at every stage of medicine struggles with feelings of inadequacy, shame, fear, whatever it is, and that those are real and that's part of being a doctor and that having those actually probably makes you a better doctor. So I try to be really vulnerable with my trainees about what I'm going through, how I feel about cases, and then just really stress that what I bring is that humanity and that they can bring that too, and try to remind them to step away a little bit from their sort of medical brain. And that's important, but that what our patients are really going to remember the most, is who we were at their bedside. Dr. Lidia Schapira: There's an element of authenticity and genuine presence here that I'm picking up through your response to the questions but also in your writing that is, I think, quite exceptional. And that is to really also be able to share and be very open, not only self-aware but share with others that there's a huge amount of emotional labor that's involved in being with people who are so desperately ill. And you downplay your technical skills and give more importance to presence. But I imagine it's a sweet combination of both, am I right? Dr. Rebecca Kowaloff: It really is. Yeah. I was drawn to medicine for the humanistic aspect, and that is what has kept me here and sustained me. But it is wonderful to have a breadth of skills and knowledge to bring to patients that we can be present, but we can also ameliorate symptoms and give them information to help them make decisions. So that's what I find so much joy in palliative care work because that is exactly what we do. We kind of hit all those aspects of patient care. Dr. Lidia Schapira: And I wonder if you use stories in your repertoire when you talk to patients or when you teach your students. Do you sit with patients and tell them the story of another patient that you've cared for? Dr. Rebecca Kowaloff: I actually haven't to this point, other than small snippets of anecdotes, I don't. But it's something that I think could be helpful in the future. Dr. Lidia Schapira: My last question to you, Rebecca, is what made you not just write the story but decide to publish it? I think there is a big difference between writing for ourselves when we are looking to process an experience and then really exposing our vulnerability and sharing it with colleagues and people that we don't know. Dr. Rebecca Kowaloff: I think for me, palliative care, there are so many misconceptions that its depressing work, that all we deal with is death. And I call this out in the piece that I spoke to Michael's soccer coach, and he said, it must be such hard work, I forget the exact words. And I thought back to all the things that I felt were really rewarding. And I think a lot of people might look at those aspects and say, that sounds so depressing, and you're dealing with dying young people. So I just really wanted to hopefully convey to the larger oncology community that there is fulfillment and enjoyment and reward and gratification in even the hard work and maybe especially the hard work. And that shying away from it, I think ultimately is self-preserving, but it doesn't lead to the fulfillment that you could feel as a physician and really a healer and that this is really healing work. Dr. Lidia Schapira: You make the point very clearly in your essay. I think that leaning into that distress and leaning into that sorrow actually fortifies us in a way helps us to get through it. And I would say that it requires some active work and also developing self-compassion, something that palliative care doctors know better than oncologists and we have a lot to learn from you. So thank you for the work that you do. Thank you for sharing your insights with readers of Art of Oncology and JCO. Any final message? Dr. Rebecca Kowaloff: I just hope that the piece touches people in a way they think about palliative care and in a way that they haven't before, and hope it will inspire people to lean into those difficult patient interactions and derive something that they didn't expect to. Dr. Lidia Schapira: Well, thank you very much. It's been a lovely conversation. And for 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/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: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Rebecca Kowaloff is a Palliative Care Attending at the University of Massachusetts.

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: Like, share and subscribe so you never miss an episode and leave a rating or review. 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 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

Listen to ASCO's Journal of Clinical Oncology essay, "First Cousins Once Removed" by Dr. Matthew Farrell, a radiation oncology resident at UCLA. The essay is followed by an interview with Farrell and host Dr. Lidia Schapira. Farrell paints scenes of how different family dynamics can come into play when advocating for patients. TRANSCRIPT Narrator: First Cousin Once Removed, by Matthew J. Farrell, MD, MFA (10.1200/JCO.22.02611) When I was a kid, long before I wanted to be a doctor or had even heard of oncology, I dreamed of becoming an actor. I grew up in Sacramento—not exactly the beating heart of the film industry—but my mother's mother lived in Santa Monica and we would stay with her for a month every summer. My father would unashamedly sneak me into movie premieres in famous theaters, and he bought us season passes to Universal Studios Hollywood. Despite having a serious job—as a psychologist in the emergency department—he was a kid at heart. Los Angeles was our promised land, and our shepherd was my father's cousin John, my first cousin once removed, who lived in West Hollywood and was a living, breathing actor. John wasn't famous, not yet. He was in his late 20s, just starting out, doing mostly background work and some commercials while working as a waiter at the original Cheesecake Factory in Beverly Hills. All the staff loved him there, so much so that they would give us free pieces of cheesecake just for being related to him. John was generous, outgoing, expressive, and talented. Success seemed just around the corner. One challenge for him was his voice. He had a thick Bronx accent, which would have been perfect if he had been auditioning for Raging Bull but which otherwise narrowed his prospects. He hired a voice coach to help him erase his accent. But that didn't mean he was trying to erase his New York roots. He was proud of his upbringing and family, coming from a long line of police officers, burly men with strong jaws and thick arms and outdoor voices who seemed to be the very genesis of their own stereotype. And as his Bronx accent faded, he was teaching it to me. He said he would take me to a baseball game at Yankee Stadium one day, and he imitated the beer hawkers who walked up and down the aisles, calling out to the crowd, "Get your beer here," but pronounced, "Getcha bee-ah hee-ah!" John was the first person I distinctly remember being in perfect shape. He was a sight to behold—muscular and solid, yet graceful and light on his feet. In addition to being an actor, he was training as a dancer. Coming from generational athletic ineptitude myself, I was enthralled. He taught me how to moonwalk and do bicep curls. I would walk up to my mother and flex my tiny muscles, imagining a day when I would be as strong as John. One summer, John was much thinner—his face hollowed out, his previously bulky arms as lean as my own. What I only vaguely understood at the time was that he was gay, and he now had AIDS. This was the mid-1990s, and highly active antiretroviral therapy was on the horizon but just out of reach.1,2 His treatments failing him, he became desperate for a cure. He did twice daily coffee enemas, choked down repulsive herbal concoctions, and visited New Age visionary healers. For a long time, he remained optimistic. He was in constant contact with his agent, seeking out auditions even as his strength waned. He wasn't only a waiter at The Cheesecake Factory and he wasn't dying of AIDS; he was an actor who was going to be healthy again soon. Occasionally he would call my dad, buoyant with hope, "The virus is gone. I'm cured." Of course, he wasn't. My father never tried to talk John out of pursuing alternative therapies, though he considered doing so many times. The frantic search for a reprieve from death can take us many places, and it is not to be pitied. But how do you also protect your loved ones from harmful remedies and predatory scam artists? How do you provide the best treatment when there is no good treatment? In all my years, all 10 of them, I had thought that doctors knew everything, and if you went to them, you would get better. But John wasn't getting better. Together with his doctors, we embraced helplessness. His CD4 count fell to zero. He developed skin lesions from Kaposi sarcoma. He was repeatedly hospitalized with Pneumocystis pneumonia. His organs began failing. Ultimately, he decided to leave the hospital on hospice. It was only then that he told his parents he was gay and had AIDS. At first, his parents couldn't believe he was gay. They told my father it was a phase, possibly brought on by his living in Los Angeles, a side effect of being an actor and dancer. Later, at his memorial service in New York, they would tell everyone he had died of a rare cancer. My father remembers someone asking John's mother what kind of cancer it was, and she said, "I don't know. It's very rare." During my winter break from school, my family visited John in his apartment. By that time, he had needed to quit his job at The Cheesecake Factory and stop taking auditions. His friends at the restaurant had thrown him a party and still came by his apartment most days. He lay in bed, drowsy and mildly delirious, too weak to stand. Even in this state, he kept trying to sit up to get us something to eat or drink. "I have cheesecake," he said several times. "Let me get you some cheesecake." Just a week later, on the day after Christmas, John lost consciousness. His kidneys weren't making urine, and he was uremic. My father urgently updated John's family in New York. His mother, father, and three sisters with their husbands flew in that day and crowded into John's small West Hollywood apartment. For the first time, they met John's partner, Kevin, and five of their friends, gay men who had taken turns caring for John to make sure he was comfortable and never alone. Kevin was tall, elegant, and gentle. He was as introverted as John was extroverted, and he wouldn't have been caught dead on stage in front of an audience. He ran his own successful small business and had a quiet self possession. John, though he rarely showed it, was insecure about his slow progress in the acting world, and I think Kevin helped him feel more at ease. As a medical professional and the closest relative on the West Coast, my father had served as the point person for the hospice physician. He reported the latest news: John likely had just hours to live. John's New York family, previously shielded by distance, was caught off guard. And there was an uproar. The five stages of grief multiplied to 25, occurring in no discernible order—undulations of shouting and crying and jostling that rolled through the group like The Wave through a baseball crowd. At first, they wanted to take him off hospice. They looked ready to carry him out the door to the nearest hospital. They said his decline was too sudden. It just wasn't right. There must be something he hadn't tried. For every desperate hope they volleyed, my father sensitively explained what could and could not be done, and, more importantly, he described John's wishes. They gradually realized that saving him was impossible, and not what John needed anymore. At last, everyone seemed on the same page. Everyone but John. Day by day, he held on in his unconscious state, not crossing that final threshold, as if something were holding him back. John's family became increasingly exhausted, confused, and frustrated. They couldn't eat or sleep. On day four of John's marathon survival, we called in the hospice nurse. By this time, my grandfather—John's uncle— had also arrived. The nurse gathered everyone together and explained that it was often helpful to talk to your loved one, conscious or not, to say goodbye. People who are dying may feel obligated to cling to life for their family's sake. They may need our permission, even our encouragement, to let go. And so, one by one, we all entered John's bedroom, knelt beside him, and said what we needed to say. And then, it was my grandfather's turn. By way of introduction, Grandpa Joe, my father's father, was raised in the Bronx by a stern mother and career soldier father. He was a businessman by profession and by religion. He rose in the ranks of multiple companies, eventually becoming the president of Hires Root Beer, a company that expanded during his tenure but was eventually bought by Orange Crush, which in turn crushed Hires Root Beer and made a lifelong enemy of my grandfather. (In my family, we do not drink Orange Crush.) Grandpa Joe never surrendered without a fight. Accompanied by my father and me, Grandpa Joe marched up to John's bed and bent down beside him. "You can fight this!" he said, shaking his fist. "I've had illnesses all my life and I came out on the other side. Did I let prostate cancer beat me? Hell no!" "Wait, Dad," my father said. "Wrong plan." "What?" Grandpa Joe said. "We had a whole conversation about this." "When?" "Just now, with the hospice nurse. We need to let go, allow John to pass on." "That's not what I heard." "That's becoming clear to me." My father reviewed the plan, slowly, but no matter how well you explain yourself, sometimes people hear only what they're capable of hearing. Grandpa Joe couldn't surrender. He argued and fumed, eventually stormed out. So my father said goodbye for him. That night, John died. I doubt the timing of his death was related to our collective send-off, but it sure felt like it was, and that will do. The next day, everyone assembled in John's apartment for the last time to decide what to do with his body. The family wanted to take him back to New York for a traditional burial. But there had been talk that John's Los Angeles friends were planning to have him cremated. As if about to face off, two groups formed in opposing semicircles of folding chairs—the family seated on one side, and Kevin and his friends on the other. John's father, Hank, seemed ready to fight, his whole family there to back him up. Grandpa Joe kept saying we needed to put John on a plane and get him out of there. In medical school, we learn that not all family members are created equal; when patients can't make decisions for themselves and there is no living will, you turn to the spouse first, adult children next, then parents, and so on. There is even a mnemonic (one of the clunkiest in existence) to help you remember the ranking: the Spouse ChiPS in For the patient—indicating Spouse, Child, Parent, Sibling, and Friend, in that order. Following this rule, Kevin would have come last. He and John weren't married, and gay marriage wasn't even legal then. My father, a child of the sixties, wasn't a fan of hierarchies. As a psychologist in the emergency department, he had always strived to foster a unanimous meeting of the minds and hearts. To make things a little easier on people like him, he says it is never too early to tell anyone and everyone what you want in life and in death. Then, importantly, write it down, in an advance directive, on a POLST form, and maybe even on a few napkins scattered throughout the house. Hank fired the opening salvo: he told Kevin that they were going to take John back to New York. Their community expected a traditional burial, needed it. Kevin listened quietly until Hank finished. With a softspoken grace, he looked Hank in the eyes and told him he would never do anything against the family's wishes. If they wanted a burial in New York, he would help carry the casket. But, he said, John had told him many times that he wanted to be cremated and have his ashes scattered on Maui, at a certain overlook they had visited together. There was a long silence. Hank looked around, at his wife and family, at Grandpa Joe, all of whom seemed to be waiting for him to deliver their counterpunch. But then he lowered his head. He started crying into his hands. A minute passed, and then he sat upright, sniffed, and nodded. In a clear, firm voice, he said, "That's it. That's what I want for John. I want you to take him to Maui." In perhaps the only true miracle I have ever personally witnessed, Kevin and his friends lifted from their chairs in perfect unison, crossed the small living room, and flooded the family with hugs. Everybody cried, and the many headed beast of our congregation dissolved into a sea of affection. Kevin did go to Maui to scatter John's ashes. Afterward, John's family celebrated his life with a memorial service at their church in New York. My father gave the eulogy and Kevin sat with the family. All of this was a long time ago now. John would be in his fifties. He would have mastered a Hollywood accent. His big break would have come. He would have taken me to the Oscars. I moved away from California to go to graduate school and medical school, but eventually, I found my way back to Los Angeles. I still go to iconic theaters. I finally bought season passes to Universal Studios Hollywood. And like everyone else in this town, I'm trying to write a screenplay. But I'm not an actor. I'm not remotely famous. I'm a radiation oncology resident. I've learned a few things since the 1990s, and so has the rest of the world. It still devastates me that John just missed the major advances in care. I think about him regularly during my training. In oncology, life-prolonging breakthroughs are frequent, which inevitably means that some people will be among the last to miss out. Some people, and their families, will look to me for hope when there is none. In their entreaties, I see shades of my own loved ones—my father's diplomacy, Grandpa Joe's doggedness, Kevin's advocacy, Hank's compromise. Most of all, I see glimmers— brief resurrections—of John, whose disease stripped away so much, but left in clear relief his kindness and humanity. 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're joined by Dr. Matthew Farrell, a radiation oncology resident at UCLA. In this episode, we will be discussing his Art of Oncology article 'First Cousin Once Removed'. At the time of this recording, our guest has no disclosures. Matt, welcome to our podcast, and thank you for joining us. Dr. Matthew Farrell: Thank you so much for having me. Great to be here. Dr. Lidia Schapira: It's our pleasure. I'd like to start this conversation just asking a little bit about your reading preferences. Are there any books that are on your figurative night table right now that you'd like to recommend to our listeners? Dr. Matthew Farrell: Yeah, a lot of times that night table is very figurative in that I am listening to audiobooks. Living in LA, I spend a lot of time in the car, so I listen to a lot of books. But I do like to physically read certain books, and one of those recently was George Saunders' new collection of short stories, Liberation Day. He is a wonderfully creative, funny, warm-hearted writer of short stories, which is one of my favorite forms. It's what I've written the most and what I studied the most back when I was in school, taking classes, undergraduate and graduate in creative writing. Dr. Lidia Schapira: Tell us a little bit about your passion for writing and how you have integrated that into your professional life now as a medical oncologist? Dr. Matthew Farrell: Yeah, I studied writing and was interested in writing before I transitioned to medicine. So, I minored in creative writing in college, and then I went to graduate school to get a Master of Fine Arts in creative writing and fiction writing. And it was partially that process that eventually led me into medicine. I realized that a lot of what I was writing about actually had to do with medicine. And as I was rereading some of my own work, I was drawn to stories of illness and family and recovery and processing grief, and I decided that those stories were really compelling to me and decided to transition to medicine. It was also helpful that my wife - girlfriend at the time - was applying to med school, so I had that idea in my head, and she was inspiring to me. So, I transitioned to medicine.I love to keep writing. I still love writing, and a lot of what drew me into oncology specifically is the brilliant, captivating, moving stories of interacting with people. And so it's one of my outlets and things I do for fun, as well as a way of helping me process what I see. Dr. Lidia Schapira: Before we talk about this story, let's talk a little bit about your ideas of the language that we use, because I know you've written about that as well. So, as a writer and as a person who loves to reflect and find story, tell us a little bit about how you negotiate the words you use and the language you hear your colleagues and your peers using with patients. Dr. Matthew Farrell: Coming from a writing background, where in workshop, we would go through our own stories, my writing professors would go through each word with a fine-toothed comb and sometimes in very elaborately, critical ways would say that this is a terrible word, this destroys the whole sentence, the whole story. And it just had me paying attention to the written language as well as the spoken language. And one of my creative writing mentors, my thesis advisor Ahud, he had leukemia and eventually died of leukemia, and he talked a lot about the experience of having cancer and the way that cancer is often talked about in this kind of heroic way in which the treatments are weapons and cancer is waged on a battlefield and people with cancer are heroes of that and how that can be very empowering in certain circumstances and also very draining in others. Dr. Lidia Schapira: Those are such fine points, and it's obvious that you're very careful about the language that you use in your writing. So, let's talk a little bit about this piece that we've just published in JCO that is a little different than most of the pieces because it describes scenes. Tell us about how you put these scenes together, what it meant to you, and what the overarching message is for your readers. Dr. Matthew Farrell: Yeah, I think I'm used to writing scenes. I'm used to writing both fiction and nonfiction stories like this, and when I was approaching this, I just wanted to try to capture the experiences as I had understood them. And I also talked a lot with my family about them to try to remember what it was like and how our thoughts have changed on it over time. And so I tried to capture who John was and my memories of him as best as I could. I think that the best way to get across people's personalities, their vibrancy, is by writing scenes about them, because I can never describe someone as well as they can illustrate themselves through their own actions and dialogue. Dr. Lidia Schapira: So John was this figure that you had admired as a child and was so interesting, and then you bring us to a very debilitated John and some scenes in his apartment. Tell us a little bit about the time, the context, and the illness. Dr. Matthew Farrell: Sure. This was the mid-1990s, and there were a lot of changes going on in the care of HIV and AIDS, a lot of rapid changes in our understanding of the illness as well as the treatments available for it. And it was really hard and devastating that John was able to see a lot of promising treatments on the horizon, but they weren't readily available to him when he needed them. And so it's tragic to think about, if all of this had happened just a year later with the rollout of HAART, or Highly Active Antiretroviral Therapy, his story might have been completely different, and he could easily still be here today, but he just missed it. And so that was very hard to see him go from being just about as vibrant and healthy and active a person as can be imagined, someone who I just envied and admired in terms of his physical ability; for him, if he could go from where he was to where he ended up, it was just completely devastating. Dr. Lidia Schapira: And then there was the stigma of the disease and the scene that you so beautifully share in your piece about different family members coming in to talk with him and say their goodbyes. And I think it was your grandfather who just couldn't let go of the 'you must fight, you're going to get well' narrative. And I think your father, who is a psychologist, was sort of saying, "Hey, wait, we're having the wrong conversation here. This isn't what we agreed to." Can you tell us a little bit about what that felt like to you, observing it, perhaps your younger self and how you've thought about that now as a professional who's probably having these difficult conversations with patients? Dr. Lidia Schapira: This was my first experience with these sorts of conversations, and I think about them a lot now, is I do have these talks with people, and I just can picture my Grandpa Joe charging in there and saying, "You can fight this," completely out of tune with what the goal was. And he and my father are similar in some ways, but very different in others. My father is very relaxed, easy-going. He could come to a cordial agreement with a grizzly bear, and my grandfather was that grizzly bear in some respects, and he was stubborn and not always the best listener. But what was striking about it to me is that I know that my grandfather's actions in that moment, even though they weren't in line with what we were trying to do or what my father and the hospice folks were trying to have us do, they still came out of love and out of devotion to John. Grandpa Joe, how he expressed his love for his family was through fighting for them, and so he was doing that for John in the only way that he knew. And so when I am involved in conversations toward the end of life with goals of care now and I see situations in which people don't always reach the same page or come to the same understanding, I'm reminded of the fact that that can be surprising and frustrating, but it's okay because people process grief in their own ways and express love in their own ways. Dr. Lidia Schapira: I can just imagine you're thinking about that when you're in a room and you're sort of casting people, "Oh, this is a Grandpa Joe. He means well, he loves a lot, but we just need to help him to understand what's happening." And there's another character in your story that I want you to talk a little bit about, and that's Kevin, the loving partner and caregiver, who's first sort of marginalized by the large group descending upon them and claiming John. And then there's a scene where there's peace between all factions. Tell us a little bit about how that felt to you, witnessing it as a child and how you thought about it in the years that came later. Dr. Matthew Farrell: Yeah, I was still very young at the time, but these scenes completely seared themselves into my memory. And the piece that ended up coming out of this scene was due to Kevin and Kevin alone and his love for John, which he communicated so well, as well as the knowledge he had of John's wishes that other people didn't have. That is what allowed people to come together and to begin healing. And it has reminded me that it is never too early to share your wishes with people you love who can then be advocates for you when you can no longer advocate for yourself. I tend to think about it this way: when you communicate your wishes to other people, you are allowing yourself to get the type of care you want and not get the type of care that you don't want. But you're also giving a gift to your loved ones because by Kevin communicating what John wanted to our family, to John's father, it gave everyone the confidence that they knew that they were giving John what he wanted. And that provided a lot of comfort. So if you share that with someone and then they have certainty that they're helping you achieve what you would want. And that's the gift that Kevin gave to our family that none of us will ever forget. Dr. Lidia Schapira: I think the use of the word 'gift' is wonderful, totally appreciated. And I understand you're very deliberate with your choice of words, so I appreciate that. I think that we don't quite know how to value sometimes some of the gifts that our patients give us in the exam room, at the bedside, in terms of how they help us, help them by being clear, by expressing their gratitude often. And you bring that out so beautifully. So as a gifted and trained writer who's now embarking on a career in radiation oncology, how are you going to continue to combine these talents? Are you writing a play or what are your plans? Dr. Matthew Farrell: I still just write a lot in whatever comes to me. And I do write a lot about medicine and also a lot not about medicine. And it's fun for me. I did study writing formally, but I still have tons to learn all the time and I'm still learning from other people. And I try to be as open as I can to feedback in my own writing. I am, among other things, trying to write a screenplay, like many people in LA. I also worked briefly in the film industry for a summer at a film management company, and there was this joke about how everyone in LA is writing a screenplay, but almost no one has written a screenplay. And so I'm unfortunately still in the former category, but working on it. Dr. Lidia Schapira: Is there something you've learned working in the film industry that you want to share with your colleagues working in oncology that could help us be better doctors? Dr. Matthew Farrell: One is just, I think, movies, shows, writing, a lot of it is focused on people and humanity and the human condition. And I find those stories very moving. And those sorts of stories are also very present and central in medicine. I think that obviously, by getting to know people, you can help them achieve what they want. I know that, again, this whole story was my first encounter with the limitations of medicine and when there aren't very many treatment options available to help people therapeutically. But still, there were many good outcomes for us to work toward in this situation, and in oncology, too. Whether that's helping to provide understanding, helping people come together, helping provide comfort. I know hospice and palliative care was incredibly helpful to John, and that's one of the things that I like about radiation oncology, among many other things, is its role in palliative care, and palliation in terms of reducing pain, reducing bleeding, reducing suffering, enabling functional gain and quality of life. And yeah, I think that the stories that I encountered in movies, which I got a great appreciation for, among other things from John, and the stories that I read about in my study and writing, I still am learning and experiencing those stories in medicine. And it's been each kind of phase that I was in have been incredibly moving to me and have helped me grow as a person. Dr. Lidia Schapira: So before we end, I have to ask you this question. Do you have a favorite illness memoir or story that has been published or has been used to inform a play? Dr. Matthew Farrell: One of the writers that I've studied the most who wrote about medicine as well as illness was Anton Chekhov. I took a whole course on him when I was in graduate school and he was a physician, one of the great physician writers of all time. And he wrote about, in contrast to what a lot of other writers were writing about at the time, he wrote about doctors, people, peasants, everyday humanity in really moving ways. And he just has so many stories about illness and pain and loss that are all worth reading. Dr. Lidia Schapira: Well, thank you. It's been a lovely conversation. We enjoyed reading your story and learning about the family. Thank you for sharing that with us. 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'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. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Matthew Farrell is a radiation oncology resident at UCLA.

Listen to ASCO's Journal of Clinical Oncology essay, "I Want to Kill You" by Dr. Noelle LoConte, Associate Professor of Medicine at the University of Wisconsin School of Medicine and Public Health. The essay is followed by an interview with LoConte and host Dr. Lidia Schapira. LoConte shares her experience of a patient's threat to kill her and her reflections on how health care can be improved. TRANSCRIPT Narrator: I Want to Kill You, by Noelle K. LoConte, MD (10.1200/JCO.22.02896) My patient threatened to kill me. I was in the middle of a busy medical oncology clinic. I was seeing her to discuss test results 1 week after I told her I was concerned that her cancer had returned. As I suspected, the test confirmed recurrent cancer, and this time, it was incurable. I walked into the room to share this news with a woman who I had been seeing for about 3 years. I had been her oncologist since she was first diagnosed with stage III cancer and saw her through surgery and adjuvant chemotherapy. I had met her children, knew the names of her pets, and had discussed my children and pets with her. We were on very friendly terms, and I enjoyed seeing her name on my clinic schedule, certain that beyond discussion of her cancer and test results, we would also get into some interesting conversations about life, the weather, or college sports. Truly, it was a delight to be her oncologist. She had no known mental illness, no brain metastases, and had never been angry or violent with me. I used the SPIKES protocol to review why we were there and deliver the test results.1 I had done this many times before, and there was nothing that stood out to me in the moment about her or this clinical situation to make me think that I was in danger—a fact that made what happened next even more shocking. When I paused to see what questions or thoughts she had, she said, "I want to kill you. I want to blow your face off. You should never have become a doctor." I intellectually understood that she was upset about the news of her cancer recurrence and had understandable anger at the dramatic impact this turn of events would have on her future. I understood that, in her mind, someone had to be blamed, and, mostly out of convenience, it was going to be me. I have since wondered if her lack of close friends and family may have amplified her reaction, in that she had few outlets available to her to discuss her fears and concerns. I have wondered if she felt let down by me after our years of cordial and friendly visits. It was a real-life example of kill the messenger. She continued telling me that she could find my home address. At that moment, I scanned the room and recognized that I could be in real danger. I stood in the corner of the room. To get out, I would have to walk around the desk and between her and the examination table. I also realized that because it was a holiday, there were very few people around who might hear me yell for help. We did not have a panic button or hospital security on speed dial, and it would have taken them many minutes to get to me if I had used the phone in the examination room to call security. I looked down and saw that she had two large bags with her. Patients often bring bags such as these to their chemotherapy appointments, bags filled with things to pass the time such as iPads, books, knitting, board games, blankets, snacks, and water bottles. Suddenly, I realized that she was not scheduled to get chemotherapy that day, so why did she have these bags? I was sure I was about to be killed. I was certain she had a gun in those bags. I said anything I could think of to de-escalate the situation and get out of the room. I promised her a new oncologist, told her I would become a better doctor, and suggested that maybe the biopsy results were wrong (although I knew they were not). As she continued her tirade, I carefully walked past her to get out of the room, and although she never moved toward me, she continued to yell about what a terrible person I am. Once I was back in the workroom, a nurse escorted the patient out of the clinic. We called hospital security and were told they felt their services were not needed as the patient had left the clinic. Despite this horrific encounter, I managed to make it through the rest of the clinic day in a daze. After the clinic was finished, I emailed my supervisor since it was a holiday and other employees were not in the hospital for me to call. In this email, I conveyed my fear and concern about this encounter while making it clear that I was still worried about my safety and the ability of the patient to continue to harm me. The response I received was generic: We will look into it. The very next day while I was at home, I received an alert that there was an active shooter in the area and realized with dread that it was on my block. It was not my patient, but her words about finding my home address haunted me. I hid on the floor after closing the blinds and locking all the windows and doors. My children were with me. For days, I did not sleep more than 1 or 2 hours. I was on constant high alert. Three days later, I was seeing a different patient in the clinic and had what I now realize was a panic attack. I was barely able to complete the visit. The patient was kind and understanding, but I felt inadequate and knew that my patients deserved better. Importantly, I also knew that I deserved better. I reached out again to my immediate leadership team and said plainly that I was struggling and needed help. I was offered statements of support but no concrete actions. While crying in my office, I searched our hospital's website for possible sources of help. I was lucky enough to come across our Employee Assistance Program and eventually got connected to a therapist. I will never forget the kindness and help she provided. She (correctly) told me that I had suffered an intense trauma and walked me through the next steps, which included meditation, hydration and nutrition, and intense aerobic exercise. She explained that the aerobic exercise (telling me to run as hard as you can with a goal for high heart rate and lots of sweating) can help the brain to heal from trauma and will prevent or diminish the development of posttraumatic stress disorder. I resisted my urge to search on PubMed to ascertain if these were evidence-based solutions and decided to try whatever she suggested. She also helped me accept a 2-week leave from work and find a therapist who specialized in trauma for health care workers. I continued to see a trauma therapist for a year until I felt I had adequately recovered. Eventually, as is true with most traumas, time itself was the best healer. A few weeks later, when hospital leadership learned of my experience, things started to happen. Security did a walkthrough of the clinic space. Patient relations notified the patient that this type of behavior would not be tolerated. There was a backup plan put into place in the event the patient needed care when I was the only oncologist available (eg, on the in-patient unit). It was not all forward progress, however. I was told no changes needed to be made to the clinic and that we could not keep examination room doors open because of privacy concerns. The provider desk would continue to be in the corner of the room, and the patient would continue to sit between the provider and the door. This was understandable given the cost to reconfigure rooms and the unfortunate reality with firearms that even being close to a door may not matter. I asked for panic buttons to be installed—I knew these existed in other clinics—but was told this could not happen. When I asked to be scheduled in rooms where my desk could be next to the door, I was offered a single conference room with no examination table and no medical supplies. I usually work out of three rooms on clinic days, so this would not work. I figured this was as good as it would get and elected to move on and suck it up. Fast forward to 2 weeks ago, when I learned that as much as I hoped these traumatic patient interactions would leave health care workers, they never truly do. I was the oncologist for the in-patient unit at our hospital, which is a liminal space of end-stage disease, anxious patients and families, and difficult decisions. The stakes and severity of the patients' situations are high. One patient and her family were furious at their medical situation of rapidly progressive cancer, as well as the hospital parking and layout, the plan of care, and even the cafeteria options. I was the recipient of all their frustration. As the patient and her family yelled at me for being inept and stupid and not serving their needs, I had the distinct sensation that my spirit was floating away from my body. I was rising toward the ceiling, watching it all play out in front of me, seeing myself from a bird's eye view. I thought, "Wow, I am dissociating." It was a surprisingly effective tool to Protect me at that moment and one that I now recognize as a normal response to trauma. Once the patient and family got all their anger out and told me to leave the room, I became unsteady and had to hold the banister to stay grounded. To drive home how vulnerable we all are in facing these kinds of threats, I reflected on the job of an oncologist. I give bad news on a regular basis, I control opiate prescriptions, and many of my patients feel their pain is not well controlled, a phenomenon seen across many oncology patients.2 If we think physicians are only murdered in the emergency room or on the psychiatry unit, we are fooling ourselves. Recent changes to concealed carry laws and increasing levels of medical mistrust and anger directed at health care workers in the wake of the COVID-19 pandemic likely will increase all providers' risk of gun violence. With reflection, I now understand that my experience then was made worse by the lack of informed response by leadership to mitigate my trauma and the lack of efforts to improve safety. We deserve leaders and hospital staff who know immediately what to do when a physician is threatened, including reassigning the patient to a new provider immediately, having hospital administration or patient care services review with the patient the zero tolerance policy to provider threats, and allowing a prompt leave from work to address the trauma response, which is best done immediately after the event not months later or only on request. We deserve urgent access to therapists and peer support who understand how to process and overcome trauma. Institutions should track threats to providers in real time and make rapid changes to improve safety. As individuals facing a traumatic patient encounter, we cannot afford to wait for the system to catch up to our needs. We can seek our own counseling and professional support while also providing critical support for our peers.3-5 I thought I was the weak one for not being able (even still) to let this death threat be in the past. I realize now that I am brave and strong for asking for help. We deserve safe environments and clinical practices to allow us to do the difficult work of being an oncologist without worrying about our personal safety. Together we can create clinics, hospitals, and teams that prioritize provider safety and proactively work to mitigate the trauma of patients and families who threaten their physicians and providers. 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. Noelle LoConte, associate professor of Medicine at the University of Wisconsin School of Medicine and Public Health. In this episode, we will be discussing her Art of Oncology article 'I Want to Kill You'. Our guest disclosures will be linked in the transcript. Noelle, welcome to our podcast. Thank you for joining us. Dr. Noelle LoConte: You're welcome. Thanks for having me. Dr. Lidia Schapira: It's our pleasure. Dr. Lidia Schapira: I like to start the conversation by asking authors what it is that they're reading or what book they would recommend to a friend. Dr. Noelle LoConte: Oh, that's a good one. I'm reading a book called Hell of a Book right now. Highly, highly recommend it. It's phenomenal. And a book that I would recommend that I recently read - well, Pachinko is a book that I read last year, but I just can't stop thinking about it. So I think that would be my recommendation. Dr. Lidia Schapira: So good fiction is a wonderful way of releasing stress after a hard day at work. Dr. Noelle LoConte: Truly. Dr. Lidia Schapira: Can you talk a little bit about what made you write this particular piece? Are you somebody who likes to write to process experiences, or was this a particular message that you needed to convey? Dr. Noelle LoConte: Yeah, I used to journal quite regularly, but gave that up when I started residency and haven't really picked it back up. But this story kind of wrote itself for me. I felt compelled. I could not stop thinking about it, and eventually, I had to do it. Dr. Lidia Schapira: Reading it is very impactful. And you start with this amazing line, "My patient threatened to kill me." So you're telling us immediately what happened. And the story is quite awful, and I don't know if I should ask you to tell us a little bit about it, but just for the sake of bringing the listeners into the story, can you very quickly recap what happened and how that made you feel? Dr. Noelle LoConte: Yeah, the quick version is I had a long-standing patient in Oncology who I had an established relationship with, who had no red flags for me, who was getting the news of a recurrence, and in response to that news, gave me what I thought was a credible threat to kill me. And the story is about sort of what happened after that, the ripple effect even years later, and how the response of my boss, my health system, my colleagues maybe amplified or made it worse. And then what really compelled me to write this story was when there was a physician that was murdered by a patient, I think not an oncologist, but I just felt the circle sort of tightening in that eventually we're all going to have to think about this. And so that's really what pushed me to write it. Dr. Lidia Schapira: Yes, and we're grateful for you bringing it to our attention. Let's just start by reflecting on this relationship you had with a patient. You opened the essay by saying that you seemed to trust each other, that you were delighted to see her name on the schedule, that she knew about you, that you had shared freely about your life. And then this threat comes out of nowhere. You didn't anticipate it, and it also comes at a time when there were very few people around because it's a holiday. So tell us a little bit about how you felt in that moment. You basically wanted to make a quick exit from the room, and that comes across, but can you tell us a little bit about what the feelings were that you experienced at the time? Dr. Noelle LoConte: Immediately, I felt terrified because whether she intended to or not, I believed her that she had a firearm and was going to kill me. The story goes into why I felt that way, but suffice to say; I couldn't sort of intellectualize my way out of this one. I really, deep in my heart, felt panicked. I think after the fact after I got out of the room and got through that day of clinic, I felt ashamed. I think that was probably the emotion I felt, that I fell for it, so to speak, that I didn't just trust that everything was going to be fine. Dr. Lidia Schapira: Can we talk a little bit more about that shame? I think that is such an important feeling that many physicians share an experience at some point and often doesn't get talked about. How long did it take you to understand that it was perhaps some shame that you were also feeling and perhaps that that was also isolating and compounding the trauma? Dr. Noelle LoConte: I would say I felt ashamed because I got back to the workroom, and I had to ask for help. I'm of a generation of physician before work hour restrictions and caps and so forth, where I worked many a day, totally sick. I don't think I had ever called in sick to that point. I'm not saying that to say that's the right approach. I, in fact, do not think that's the right approach, but that's the type of physician that I am and how I grew up. I'm also from the upper Midwest, where work ethic really is like the most important personal characteristic, so I take my work pretty seriously. So I felt I had let myself down, I'd let my team down, I had let my patients down, that if I had been a "better physician," that this wouldn't have gotten to me the way it did. So I would say I felt shame almost immediately. It's been the letting go of the shame that has taken a lot longer. Dr. Lidia Schapira: Talk to us a little bit about the process of letting go of the shame. You mentioned very specifically some activities that helped, finding a therapist that helped, taking time away from work that helped. But walk us through that process. Dr. Noelle LoConte: Yeah, and I think part of the story, too, is that I kind of bumbled into this, and it would have been better for people above me or supporting me to be like, "You need to do X-Y-Z." And ultimately, it was when I landed with Primary Care that they were like, "Oh yeah, we get threatened all the time. Here's how we do it." But yeah, what I did was I used employee assistance program, and then they connected me with a trained therapist who worked with providers that have been threatened - so unfortunately, a growing population for her - and I just in that moment decided to set aside my need to kind of be evidence-based and intellectualize my way out of everything, and I said I am just going to trust that whatever they tell me is sound, and no matter how 'woo' it sounds to me, I'm just going to do it. Because, at the time, I wasn't sleeping at all. At this point, it had been days, I think since I had slept. And she talked about hydration, nutrition, exercising to really get your heart pumping, get really sweaty, having a safety plan, not being alone. And so I just really just said, 'I'm just going to do it.'. And then, ultimately, it's really time away from the incident. I mean, it still has not left me, but it is much better. Dr. Lidia Schapira: Can you share with us a little bit how this impacted your life away from work, at home, how it impacted your relationship with your kids, with your peers, and with people you interact with outside of medicine? Dr. Noelle LoConte: Yeah, I mean, the most immediate thing was that, unfortunately, there was an active shooter alert that happened shortly after my incident. And I was at home with my kids, and in the moment, I thought I was going to die, and I thought my kids were going to be left without a mother. So, my kids, I wanted to keep them safe from harm, and so I had real moments of thinking like, I should leave my job. It's not worth it. As far as my husband, he's also a physician, and so he implicitly understood. Dr. Lidia Schapira: I'm glad you had the support that you needed. But you talk a little bit about the lasting trauma, and in the article, you mentioned that what led you to write about this was that there was a trigger that occurred. Can you share a little bit about that? And not only what the triggering incident was, but how do you continue to deal with sort of this ripple effect of what happened now several years ago? Dr. Noelle LoConte: Yeah, the triggering event for me was I was up on our inpatient unit. So I'm an academic oncologist, we have an inpatient oncology unit. At the time, it was staffed by medical oncologists, we do a week at a time. Now it's shared with the hospitalist, which is wonderful. Actually, it's a great model. But I was the medical oncologist up there, and so you get whatever comes in the door for that week, and there was a patient who was angry and frustrated and had a very bad cancer and the recipe for possible aggressive behavior. And so we were rounding, and I was in the room, and she started yelling at me, and her mother started yelling at me about parking and the food in the cafeteria and when her CAT scan was going to happen - things I have zero control over. But I'm used to– I think all oncologists are used to kind of being the receptacle for people's feelings about an out-of-control situation. At least they can control their conversations with us. So in the moment, I was like, "Okay, she's not really mad at me, she's mad at the situation, and I'm just going to let her get this out." But what happened was it brought me right back to that room with my patient, and I dissociated for the first, and I think maybe the only time in my life where I physically could feel myself, like, leaving my body. It was very unsettling for me in the moment, and I had to kind of back up against the wall and ground myself. I realize now what I was doing. But yeah, so that happened. And then that same day, I think, was the day that the orthopedic surgeon got killed. And so I was just like, 'What is going on?' There's so much gun stuff right now that it's just impossible to be like, "Well, I'm never going to think about this again," because it's in your face all the time. Dr. Lidia Schapira: I'm so sorry this happened to you. And again, on behalf of all of our readers, we're grateful that you took the time to share the experience with us. So thinking a little bit about how we can respond to colleagues and how we can perhaps prevent some of these consequences of violent threats or acts of violence, what have you learned, Noelle? How should organizations respond? What do we need? What can we expect? Dr. Noelle LoConte: Yeah, I think if you're in a leadership position over a clinic, over a group of providers, including physicians, NPs, APPs of any variety, learners, medical students, residents, fellows, you need to know at a moment's notice what to do if that person is traumatized. And I would include threats of violence in that trauma. Ultimately, it was sort of a game of hot potato with me, and nobody really knew, and they were looking into it, and it's really time sensitive. So I would say if you're a leader, know what to do and know it immediately. I think the other thing is, if you're a male, know that this happens to your female colleagues and non-binary colleagues much more. One of the strategies is to transfer the patient to a male provider. I think hospital security could have been more responsive to my concerns. So in my workspace, and it continues to this day, the provider's in the corner of the room, so you have to walk past. I think we could take some cues from psychiatry and emergency medicine, having things like panic buttons, easy exit for providers, security walk-throughs. Dr. Lidia Schapira: It saddens me to think that we need to think about it and plan for it in a way because we talk so much and train so much for establishing trusting relationships with our patients, and what you're saying is, basically, we can't take anything for granted, even in the context of what appears to be a functioning longitudinal relationship. And that's a scary thought. How do you go to clinic every day and think that this might happen again when you walk into a room? Dr. Noelle LoConte: I mean, I'd be lying if I didn't say I sort of compartmentalize it, right? I am much more cautious about what I share with my patients about my family. I always kind of take a scan of the room when I'm entering right now and kind of know my surroundings a little bit better, I would say. And I don't assume, I think before this, I had assumed if they have brain mets, if they have a history of a psychotic mental illness, something like that, that I would be more concerned. I'm sort of always aware that this could happen. I think advocating for things like metal detectors, hospital security are all good things too, and I have much less tolerance for being the punching bag, I would say right now. So when people get angry, I just say, 'I'm leaving the room. When you've calmed down, I'm happy to come back. Here's how to get a hold of me.' And that's all just self-preservation. That's not because I think patients are bad for being angry. I would probably be angry too, but I need to have clear boundaries about what I can and cannot do. Dr. Lidia Schapira: How do you think this experience has changed you? And do you think that your colleagues and your patients appreciate the change? Dr. Noelle LoConte: I think it's made me less open. It's definitely made me not want to have super close relationships with patients anymore. Less trusting. I mean, I know that my colleagues happily covered my clinic, but I know there are also hospitals where that wouldn't happen. I'm eternally grateful to those few weeks where they let me take a breather because that's when I realized I really love patient care, and I missed it. I don't know if everybody loves the new me, but I don't know that we had a choice. Dr. Lidia Schapira: Do you think this is, in part, a gendered conversation? You mentioned that it's more likely to happen to women. Can you expand a little bit on that for listeners? Dr. Noelle LoConte: Well, when you go to the literature, which of course, being an academic oncologist, was my first response, this happens all the time in emergency medicine and psychiatry. Much more common against women, I'll say providers, but physicians in particular. So yes, it is absolutely a gendered conversation. I think the expectation when we walk in the room is a different expectation about how relational we're going to be, how caring and compassionate. It's not just enough to be competent and intelligent. You also have to be motherly and loving and all this. So, yes, I absolutely think it's a gender conversation for sure. For sure. Dr. Lidia Schapira: Are there any texts or papers that have been particularly helpful to you or stood out to you that you would recommend to others? Dr. Noelle LoConte: There was a series, I believe, in emergency medicine literature. I can circle back to you guys and get you the exact reference, but I found their strategies for dealing with aggressive patients very helpful. And I actually found talking to my nursing friends and colleagues was really helpful because they are really experts in de-escalation. So I really rely on them to kind of get language that makes sense coming out of my mouth like that whole, "I'm going to come back when you stop being angry." So I would say more than any individual article, it was talking to nurses. Dr. Lidia Schapira: I imagine a simulation exercise could be helpful as well for all of us, right? Especially those of us who may be more at risk or have the sort of open, sincere approach to patient care as if we can trust everybody, and perhaps we can. We're very glad that you shared what you were able to share. Dr. Noelle LoConte: Thank you. Dr. Lidia Schapira: That you brought attention to this very important topic to our community, and I'm sure you've already had responses from colleagues. We've certainly heard from a lot of people who really appreciate your honesty and bringing this story forward and have unfortunately heard similar stories from colleagues. Dr. Noelle LoConte: Yeah, I think it's pretty common. Dr. Lidia Schapira: So good luck, read well, play a lot, exercise your brains out until your heart rate is in the stratosphere. And thank you. Thank you for sending it. Thank you for sharing it. I know it's been very difficult. Dr. Noelle LoConte: You're very welcome. Thank you for reading it. 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. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Noelle LoConte is an associate professor of Medicine at the University of Wisconsin School of Medicine and Public Health. Additional Reading: 1. Richardson SK, Ardagh MW, Morrison R, Grainger PC. Management of the aggressive emergency department patient: non-pharmacological perspectives and evidence base. Open Access Emerg Med. 2019 Nov 12;11:271-290. doi: 10.2147/OAEM.S192884. PMID: 31814780; PMCID: PMC6861170. 2. Incivility in Health Care: Strategies for De-escalating Troubling Encounters

Listen to ASCO's Journal of Clinical Oncology essay, "Mrs. Hattie Jones" by Dr. Eric Klein, fellow at Stanford's Distinguished Careers Institute. The essay is followed by an interview with Klein and host Dr. Lidia Schapira. Klein shares the mystery of why Mrs. Hattie Jones might have died when she did. TRANSCRIPT Narrator: Mrs. Hattie Jones, by Eric Klein, MD (10.1200/JCO.22.02405) That Hattie Jones died was not unexpected, but why she died when she did has been a mystery for more than 40 years. It was late summer and she'd been hospitalized for several weeks when I met her, as it were. In the era before a palliative care subspecialty was established, patients with incurable cancer like Mrs Jones were admitted for inevitably long hospital stays characterized by slow declines in form and function, managed by trainees like me, the least experienced and least expert on the team. The chief resident on the service, burly and gruff, brought us into her private room early on the first day of my rotation on the colorectal surgery service. Mrs Jones appeared malnourished and frail, with one intravenous (IV) bottle hanging and concentrated urine collecting in a bag at the bedside. She did not, in fact could not, acknowledge our presence or answer our queries as to her well-being or needs because of an induced somnolence by the morphine running continuously in the IV. She breathed regularly but slowly and did not seem to be in distress. The goal in caring for her, we were told, was simply to keep her comfortable until she died. She was the first terminally ill patient I'd cared for, and her isolation and unresponsiveness filled me with sadness and unease. Alone on afternoon rounds later that day, I was surprised to find someone sitting beside her bed holding her hand. The visitor was a sturdy woman a few years younger than Mrs Jones, dressed neatly and respectfully as though she were in church. She looked at me and said, "I'm Hattie's sister, and I'm here to be with her when she dies." Her demeanor conveyed a sense of duty both to her sister and herself, and her solemnity evoked a divine presence. I introduced myself and answered her many questions about her sister's condition. "Was she in pain?" It did not seem so, I replied. "Would she ever wake up?" I explained we could wake her up by turning down the morphine but that she would likely be in pain if we did. She considered that silently for a few moments and said she did not want that, although she longed to hear her sister's voice again. "Was she getting enough nutrition?" The IV also contained sugar water with enough calories for her condition, I explained. She said she missed her sister's smile. "How long is she going to live?" I admitted that even experienced physicians could not predict that. She was silent after that and after a few minutes I excused myself to tend to other patients. The days turned into weeks, then months, as the daylight hours grew shorter and the weather cooler and the fall slowly turned into winter without much change in Mrs Jones' condition. I'd greet her on rounds each morning, never eliciting a response, briefly examine her, write new IV orders, and move onto the day's work—rounding on patients being prepped for or recovering from surgery, then outpatient clinic, the operating room, and new patient admissions. Each afternoon Mrs Jones' sister was there by her side for several hours, watching her intently, holding her hand, and sighing sadly. Each day she reminded the team "I just want to be with her," she said, "so she will not be alone when she passes." Days on call for me were generally stressful and lonely, testing my medical knowledge and incompletely developed sense of empathy. As interns and newlyweds, my wife and I had call schedules that did not match—she every third night and me every fourth, such that we only had one evening a week together that first year when neither of us was exhausted. I missed our days in medical school when we shared classes, had dinner together every night, and walked afterward to the local Baskin- Robbins; now we work in different institutions, with different hours, and rarely had enough energy in the evenings and on weekends to truly be present for the other. I drew the short straw on my team in late December and was on call on Christmas Day. Because the operating room and clinics were closed, I made rounds later than usual and Mrs Jones' sister was already at her bedside when I entered her room. She told me she came early because she was hosting her large family for an early afternoon Christmas dinner, a long family tradition. Over the months of Mrs Jones' hospitalization, we'd developed a sense of each other, she trusting an inexperienced, young, and tired doctor trying to keep her sister comfortable, me seeing a devout woman dedicated to her sister's soul. She asked, "Is it safe for me to leave Hattie alone for a few hours this afternoon so I can have Christmas dinner with my family?" and added that it would be the first without her sister's presence in many years. I replied assuredly that it was, that her sister's condition had been stable for many months and that I thought she was going to live for a least a few more weeks. She looked at her sister, then at me, gathered her coat and scarf, kissed Hattie goodbye, and headed home. The rest of the day was relatively quiet for a day on call but typical for a holiday. There were a few patient phone calls, one or two patients to be seen in the emergency room, and no emergency surgeries. The hospital provided a free meal of turkey and sides to all the staff that were on call, and those of us in the cafeteria shared a sense of holiday cheer, albeit muted by being away from our own families. Despite the happy spirit there, I was lonely, missing my wife, and sad to have to postpone my own Christmas Day birthday celebration. While thinking about that I got what I thought was a routine call from the colorectal surgery nursing unit—perhaps about a patient needing a medication reorder, or a need to restart an IV, or to talk with a family about a hospitalized relative. Instead, the nurse on the phone summoned me to the unit to pronounce Mrs Jones dead. I paused for a long moment before asking, dreading the response: Was Mrs Jones' sister back from Christmas dinner? "No", came the answer. My tears flowed copiously and quickly; my heart hit the floor. I sobbed loudly for a few minutes, unable to explain to my colleagues what had transpired. The walk from the cafeteria to the nursing unit seemed much longer than usual. I examined Mrs Jones for the final time and confirmed her lack of heartbeat and breathing. I watched as the nursing staff disconnected the IV, a lifeline that was no longer needed. I sat at the nursing station and filled out the death certificate. Name: Hattie Jones. Age: 63. Date and Time of Death: 1:23 pm, December 25, 1981. Cause of death: Cardiopulmonary arrest secondary to metastatic colon cancer. I put down my pen and summoned the courage needed for my last task—telephoning Mrs Jones' sister to share the news. I do not recall what I said, but I have a vivid memory of the reaction—she was initially silent and then I heard her cry, others in the background joining in when she repeated the news; I remain unsure to this day which one of us was more despondent. Over the course of my career, I've pondered many times over the timing of Mrs Jones' death. Perhaps she wanted her sister to be surrounded by family when hearing the news so that the burden of her sister's grief would be lessened by sharing. Perhaps it was meant to serve as a poignant reminder about the need for and power of celebrating time with family. Perhaps it was for me to experience a sense of helplessness to deepen my empathy for those who were incurable. Perhaps it was all these reasons or perhaps none of them. No matter the reason, after a career caring for thousands of patients, seeing many suffer and die along the way, I have never experienced a sadder moment. Why Mrs Hattie Jones died when she did is an enduring mystery, but her memory, the profundity of the bond between these two sisters, and the empathy I learned from them have lived on and helped me navigate the emotional ups and downs intrinsic to the practice of oncology. 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, associate editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Eric Klein, a fellow at Stanford's Distinguished Careers Institute and Emeritus Professor and Chair of the Glickman Urological and Kidney Institute at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology article, 'Mrs. Hattie Jones'. Our guest's disclosures will be linked in the transcript. Eric, welcome to our podcast and thank you for joining us. Dr. Eric Klein: Thanks for having me. It's great to be here. Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing narratives. When do you write, and what kind of scenario triggers your desire to write? Dr. Eric Klein: I haven't written anything creative like this since college, so I don't really have a process. But I can tell you the process I used for this particular piece. I had the real pleasure of being in John Evans' class. He's a faculty member at Stanford in the English department who taught memoir writing. And so the class was to teach us how to write memoirs, and it was filled with prompts, which was a wonderful way to respond, and it tapped into some creativity that I didn't know I had. So the prompt for this particular piece was to write about a secret or a mystery. And I thought about it for a day or two, and I thought, I have lots of secrets in my life, but I don't really want to share them with anyone. And I struggled with it. So I was having dinner with one of my classmates, Thanya, and just discussing this because she had taken the class, and she said, "Well, why don't you make it a mystery?" And it clicked immediately, as I have written, is that this mystery about why Mrs. Jones died when she did has stuck with me for more than 40 years. So that night, I was lying in bed trying to figure out how I was going to write this because I'm not a creative writer--tossing and turning. And about 1:30, I got out of bed, and I sat in our dark living room, and I tapped the story out on my iPhone, and I emailed it to myself, and I edited it the next day. And that was the process. Dr. Lidia Schapira: Your essay has this very factual title, including the Missus, 'Mrs. Hattie Jones'. And then it starts with this statement, "She died." We know this, but her death is not unexpected. But the timing was. And that mystery has stayed with you for 40 years. It's a very impactful opening. I thought that was very creative, actually, on your part. Beautifully done. Tell us a little bit about why you have pondered for 40 years about the timing of Mrs. Jones' death. Dr. Eric Klein: It was a very emotional event for me, in part because I was so young in my career. I had never taken care of terminally ill patients before. Nothing in medical school prepared me for that. There was no palliative medicine service at the time. And I think, as many social scientists have observed, is that things that happen to us when we're young, like our first love, always stick with us more firmly and more deeply than things that come later in life. So that's why it was so emotional for me, and I think that's why it stuck with me for so long. I didn't know how to deal with it at the time. Dr. Lidia Schapira: Did you ever have a conversation with Mrs. Hattie Jones? Dr. Eric Klein: Well, I tried. I certainly spoke with her sister a great deal, but Mrs. Jones was unresponsive, and that was by design. The morphine in the drip, and the IV drip was meant to keep her comfortable. I mean, we have learned a lot about palliative care in the intervening decades, so we don't do that anymore. But that was the standard of care then. Someone was in pain, and so you gave them enough narcotic medication to keep them out of pain, and whatever else happened downstream didn't matter. I'd say one of the other powerful things about this and sort of the key event of learning that her sister was not at her side when she died was that the whole goal of care was all focused on making that happen and facilitating things for her sister and keeping her up to date. And the nursing team was on board with that and so forth. I felt like it was a big team letdown that we let this woman down and we let her sister down. Dr. Lidia Schapira: Let's talk a little bit about you at that very tender phase of your development. You're a young intern, and you've let your patient and the team down. How did you deal with that? And how have you since processed how you dealt with that? Dr. Eric Klein: This was the saddest thing that's ever happened to me. It was the saddest thing at the time. And I think in reflecting upon my career, seeing many sad things, this still resonates with me as the saddest thing ever because of the deep personal disappointment that went along. I don't have clear recollection of how I dealt with it at the time. Probably I just was sad for a few days and moved on. I mean, being a surgical intern in 1981 was very busy. We didn't have a lot of the ancillary services that we have now. The surgical service was busy, and so we moved on day to day. This memory just popped up to me every now and then in quiet times and in discussions, in group discussions with colleagues about challenges that we faced in our career, and sometimes in talking to young people about careers in medicine and what you might experience and so forth. And so I guess I dealt with it intermittently through the years and ended up scratching my head. And finally, this was a cathartic experience for me to be in memoir writing, to be able to put this down on paper and, I hope, deal with it finally. Dr. Lidia Schapira: You make a very powerful case for storytelling as part of a practice of dealing with situations that are so emotionally complex. Forty years later, what advice would you give a young intern who is also facing a moment of extreme personal sadness and grief, and disappointment? Dr. Eric Klein: Yeah, my advice would be don't be stoic about it. That was certainly the expectation in the era that I trained. It was certainly the expectation for men. There weren't many women surgeons then, but that was certainly the expectation for men. People died—surgical mistakes happen—and we were just told it's part of the game. And I recall my chief of service telling me it puts hair on your chest. It sort of makes you a man, and so you just deal with it. So there are so many resources that are available now and a very, very different attitude about the personal part of being a physician and dealing with disappointment and other struggles and the learning curve and all of that. So I would say to youngsters, seek out help—seek out your colleagues who might have been through it. Seek out more senior people and seek out non-physician support people who are generally available at most medical centers and medical schools to help people deal with this, talk about it, and come to terms with it sooner than 40 years. Dr. Lidia Schapira: I'm curious to know if you enjoy reading narratives written by other physicians that describe similar experiences of grief and loss. Dr. Eric Klein: I always have. So the Art of Oncology, A Piece of My Mind in JAMA, and I edit a journal called Urology, and we have a section on narrative medicine. And I think that enriches the experience for the entire medical community and helps keep us focused on our real goal, which is caring for patients. And I think that's increasingly hard in the reimbursement-driven productivity era that we live in now. And that's why I think it's important to do that. Dr. Lidia Schapira: How much have you shared about this creative, reflective side of yourself with your trainees over the years? Dr. Eric Klein: I hope it came through. I can't say that I know for sure that it did. I guess I was known during my career as a storyteller, and I would often share anecdotes usually related to more clinical which is facing this clinical problem and how do you deal with it surgically, how do you deal with it medically, that sort of thing. And maybe less about specific patients. So it's probably better to ask my trainees if I did a good job with that. Dr. Lidia Schapira: Let's go back to this idea that storytelling is very powerful to help us in communicating with each other and processing experiences. Do you use storytelling, or have you used storytelling with your patients in the clinic? Dr. Eric Klein: Yes, frequently. My career was mostly focused on prostate cancer, and so when I saw a new patient with prostate cancer, even if it was the most indolent kind, the very first question on their mind always is, "Am I going to die from my cancer?" And I would say I've seen lots of patients, and I'll tell you what the extremes are. I saw one patient with lymph node-positive cancer who's still alive 25 years after his initial treatment and living a normal life. And I saw one patient with really advanced cancer who died after 18 months. And I would say to them, "Your experience is going to be someplace in between those two stories." Or there might be a more specific situation of someone facing a particular treatment or surgery and they're concerned about that, and I would even hook them up with other patients who have been through it so that they could experience the story from the horse's mouth, so to speak. I think it's an important part of managing patients, I do. Dr. Lidia Schapira: So let's talk a little bit about the language and the plot in those stories. What kind of metaphors do you use, if any? Dr. Eric Klein: Well, I had one patient tell me that I spoiled his taste for oranges because when I described the prostate, I described it like an orange with a rind or a capsule on the outside, and the cancers in the fruit in the middle. So that was one that didn't resonate ultimately. Then I switched to lemons since no one seems to like lemons and so forth. I would say the stories generally had a good outcome. Patients want their physicians to be optimistic, and certainly, patients facing cancer want their physicians to be optimistic. And I'm sure I had a lot of other specific stories to tell about specific patient experiences that don't come to mind readily now. Dr. Lidia Schapira: What book have you read recently that you've enjoyed and would recommend to others? Dr. Eric Klein: I would say Evil Geniuses, which is not a medical story at all. It's a story about the conservative political movement and the Federalist Society, and big business that set an agenda back in the Reagan era to take all the negativity around capitalism and conservatism out and to relax restrictions on business. And to fill the Judiciary with conservative judges and so forth, and how they have succeeded over the course of those decades to where we are now. I have to say I don't read much fiction. I honestly, I don't find fiction does much for me. I read mostly nonfiction. Dr. Lidia Schapira: You come across as somebody who is very self-aware, and I assume it's taken a long time to be able to say things about your feelings and recognize the impact some of these patient experiences have had on you. And in the essay, you also mentioned that your wife is a physician and that you spent a lot of time together in medical school, but then the paths diverged. And I'm interested in knowing if these sorts of stories about patients came to your dinner table. Tell us a little bit about that. Dr. Eric Klein: Yeah, all the time. Actually, over the course of our careers, we would definitely share the highlights and the lowlights of our day and talk a lot about specific patients and the problems that they faced and what we learned from that. And I learned a lot from listening to my wife. She was a pediatric neurologist, so didn't deal much with cancer, but I learned a whole lot more about social determinants of health and how social circumstances really impact the patient's ability to cope with a serious diagnosis and recover from it and so forth. Because she dealt with children who came mostly from impoverished families and didn't have the same sort of family or social service support as the kind of patients that I saw, who were mostly Medicare or private insurance patients. Dr. Lidia Schapira: I must finish this interview by asking you why you think Mrs. Hattie Jones died when she did. Dr. Eric Klein: That's a great question. I think the most likely explanation, without really knowing her, but with knowing her sister and understanding the family dynamics, is that she really did not want her sister to hear the news when she was alone in the relatively impersonal environment of the hospital. Whether or not that's true, I don't know. But that's what I had chosen to believe, that she wanted her sister to hear the news when she was surrounded by her loved ones and her family. And I think that resonated nicely with the idea that I wrote about, which is being away from my family on Christmas Day and on my birthday and so forth, and being isolated and alone and how important family is to one's personal well-being and success. Dr. Lidia Schapira: I like your interpretation. I find it both wise and compassionate. And with that, I want to invite you to share with our readers why you decided to send this story out into the world. I understand the reason for writing it. What made you decide to share it and publish? Dr. Eric Klein: So let me start with a call out and a shout out to one of my other classmates, Julie, who convinced me to take memoir writing. My wife had taken it and had a good experience with it early in the DCI experience. And I was reluctant because I've only written clinical papers and scientific papers, and I just didn't sense that I had this creativity. So thank you, Julie, for convincing me. I shared it because of the reaction I got from my classmates. The dynamic in the class was to share it with a certain number of classmates, and then we were all asked to write a constructive critique of the stories that we've written so that we could get better in memoir writing. But the emotional reaction to this, to my non-physician classmates, was so powerful, and my own reaction to it in writing it. I just read over the proofs that came the other day, and I was crying again, even though I know the story well and have been over it many times, and I thought, "This is something that might resonate with other people. This might be a universal experience." And so it was more of a lark than anything else. But I just thought the world might get something useful out of this. Dr. Lidia Schapira: Well, it resonated with your editor. One of the tests that I usually use when I read the manuscript is whether or not I'm getting teary or whether I'm feeling anything, and it certainly evoked a lot of emotion. So. Thank you, Eric. Thank you for sending it to us. So 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. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio Dr. Eric Klein is a fellow at Stanford's Distinguished Careers Institute and Emeritus Professor and Chair of the Glickman Urological and Kidney Institute at Cleveland Clinic.

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.

Listen to ASCO's Journal of Clinical Oncology essay, "Cardio-Oncology" by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. The essay is followed by an interview with Rayson and host Dr. Lidia Schapira. Rayson shares a personal experience working with a patient who has two life-threatening diseases. TRANSCRIPT Narrator: Cardio-Oncology, by Dr. Daniel Rayson (10.1200/JCO.21.00971) I was asked to see a 64-year-old man in the coronary care unit (CCU) 4 days after he collapsed in his driveway after a seemingly normal day at work. His wife told the paramedics that he had been having episodes of chest pain in the past 2 weeks leading up to his dramatic homecoming and he was diagnosed with a myocardial infarction in the emergency room. An urgent cardiac catheterization revealed critical three-vessel coronary artery disease, and on the basis of his otherwise pristine past medical history, he was recommended to undergo coronary artery bypass surgery. His admission blood work, however, revealed a hemoglobin level of 91, much lower than the last available value of 137 roughly 1 year before. When questioned, he described having difficult bowel movements over a 3- to 4-month period with occasional blood-streaked stool. A computed tomography scan quickly diagnosed his second critical problem, a locally advanced sigmoid colon cancer with multifocal hepatic metastases. I was asked to see him urgently to help adjudicate the appropriateness of proceeding with the cardiac surgery in the face of a second competing life-threatening condition and to help the cardiology team elucidate the goals of care in the context of his oncologic prognosis. I had not been inside a CCU since the depths of my residency days and walked in awkwardly while trying to convince everyone that I belonged amid the ventilators, central lines, and constantly pinging monitors. Shuffling through the nursing station, I passed a bank of video surveillance screens that would not have looked out of place in a high security prison and despite being completely disoriented, I managed to find my patient. As I squeezed into a chair between the IV pole and the movable side table upon which lie the prized possessions of the hospitalized, I took mental note of the photo of his beaming family gazing up at him. I introduced myself and tried not to let the pinging cardiac monitor distract me from the discussion or add to the headache that was already beginning to pound. He seemed to become paler before my eyes as I slowly explained the scan findings to him. His liver was peppered with variably sized metastases, too many to reliably count, I explained in answer to his question. Although there was no biopsy confirmation of his disease, the constellation of clinical symptoms, blood work, and imaging left no room for doubt. "So, what am I in for," he asked. I carefully explained why all therapies for his cancer would be noncurative in intent and why surgery would be limited to an urgent need to remedy bowel obstruction but would not change his overall prognosis. "Can't they just fix this at the same time they'll be fixing my heart?" he then asked. I circled back to why surgery could not deal with all of his disease and then spent the rest of the discussion talking about chemotherapy and the goals of treatment, which were to help him live as long and as well as he could with his cancer. "Until …?" "Until you die from the cancer," I responded bluntly. "So let me get this straight … they want me to have surgery on my heart so that I can end up dying from my cancer? Do I have that right doc?" Oncologists are experts in reframing prognosis and expectations in the face of metastatic, incurable disease. It is an important part of our jobs to be able to convince people that the median survival time of 2-3 years for metastatic colon cancer is something to cheer about. It is equally important that we are able to clearly explain that a median is just a point estimate, without direct relevance to the individual in front of us, and that we are often unable to predict how close to and on what side of that median the future holds for them. "I guess that's right," I replied, my eyes not leaving his. "It's a question of what would get me first," he stated. I nodded, "In a sense, you know the answer already." "Yes, I could have died in my driveway, that's true. I guess I just about did." "As close as anyone can come to just about dying in their driveway, yes, you just about did." "But if my heart does it, it will be quick, right? No pain. No drama. Just an ending, like almost happened?" I nodded. "But cancer-that's a whole other thing. Pain, vomiting, chemotherapy, weakness. Suffering. For me and my family." I explained the lengths to which we try and control pain and other symptoms, from both disease and treatment, and reviewed the medical and supportive care that is designed to minimize suffering. "But doc, how often does that happen? How many times can you truly say that you were able to minimize suffering? And not just for your patients, what about the suffering you don't see? For my wife, my kids. How do you take care of their suffering as they spend the next 2-3 years, if I have that long, slowly watching me die of cancer?" By then, my headache was screaming at me. A hammer behind each eye was slamming down on chisels angled to the center of my brain. The incessant pings, beeps, and buzzes of the monitors and machines were laughing at my discomfort. We kept circling back to the competing timelines of two life-threatening illnesses, the dramatically different trajectories they take to death, and the different types of fallout and collateral damage to be expected. After an hour together, he had decided that death later would always be better than death now, and as we warmly shook hands, he turned the family photo toward me as final confirmation of the motivation behind his decision. I spent a few minutes collecting my thoughts and trying to soften the hammer blows to my head with some deep breathing and ibuprofen before venturing to the work room to dictate my consultation note and find the attending cardiologist. "Thanks for seeing Mr L, what do you think?" The chief cardiac surgery resident had found me first. It was not everyday that an oncologist is needed in the CCU. I was not as incognito as I thought. I explained the onco-scenario in detail and could sense the disappointment when I came to estimates of life expectancy. A median survival of 2-3 years after a bypass would be woefully inadequate from the perspective of a cardiac surgeon, whereas, for an oncologist, it represents a realistically optimal outcome with current therapeutic options. If an otherwise healthy patient survived cardiac surgery—an increasingly expected outcome given current technology—they are fixed and unlikely to ever suffer a cardiac death. An otherwise healthy patient with a metastatic cancer, however, is never healthy again. I could never fix Mr. L. I spent some time trying to convince the resident that the value of whatever time is left for any one patient is known only to them. And that the risk-benefit equation that underlies any medical or surgical decision is always assessed from the vulnerable position of the unwell with the ultimate decision usually made on the basis of parameters beyond medical or surgical outcome expectations. I noticed his eyes looking beyond me and knew that he was barely listening to my philosophical explanation as to why I recommended proceeding with the surgery. In the end, Mr L underwent a three-vessel coronary artery bypass graft, which he sailed through without complication. I took care of him for the next 4 years, sequencing both chemotherapy and targeted therapy as his disease waxed and waned in threat until finally there was no stopping it. I got to know his wife of 31 years who along with their three grown children celebrated the arrival of their first grandchild during one of his visits to the chemotherapy unit. I saw photos of family milestones along the path of his cancer journey and laughed with him when he was teased about his chemo-good looks. I wrote letters that he took with him on family trips to give to border control if he was asked about his narcotic medications or to medical personnel if they needed background and guidance if he got sick. He always told me that the letter was more important than his passport, knowing that there would be someone at the end of the line to help him and his family if he got into trouble. A few weeks after he died, I ran into one of my palliative care colleagues who I knew was involved in Mr. L's last weeks. He confirmed that he passed away peacefully and in comfort. His wife and three children were with him, and his favorite music was playing as he became unresponsive. I gave him my thanks for helping with his care and for allowing him to die in peace and turned away to walk back to the clinic. "Oh, one more thing," he called out. I turned back in mid-stride. He told me to tell you that he was glad he did not die from a broken heart. 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 Shapira, associate Editor for Art of Oncology and professor of Medicine at Stanford University. Today we are joined by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. In this episode, we will be discussing his Art of Oncology article, Cardio Oncology. At the time of this recording, our guest disclosures will be linked in the transcript. Daniel, welcome to our podcast and thank you for joining us. Dr. Daniel Rayson: Thank you very much for inviting me to be here with you today, Lidia. Dr. Lidia Schapira: It is a pleasure. I'd like to start by asking you some questions about your process for writing. You have written essays before and published them in many venues. What sorts of clinical episodes trigger your desire to write, reflect, and then what leads you to want to share them with readers? Dr. Daniel Rayson: That's a loaded question, but thanks for asking it. So, as far as the clinical scenarios, it's those episodes in routine practice that somehow get under my skin in one way or the other, whether it's due to a strange diagnosis, an unusual reaction or interaction I've had with the patient and/or their family, a challenge in clinical management, an end-of-life experience that's particularly touching or emotional, or increasingly for me, the juxtaposition of different stories amongst a group of people with perhaps somewhat similar diseases. So really very varied. It's interesting because sometimes it's only weeks after the fact I realize that something had affected me, and then I'll make a note in my phone and at some point I'll come back to it and start fleshing out themes that I think are worth exploring. And over time, and it's usually quite a bit of time, a story basically evolves. Dr. Lidia Schapira: You're an amazing storyteller. So let's focus a little on this particular story that you're telling and bring us to the bedside. Dr. Daniel Rayson: Yeah, so this is a story - all my essays are really absolutely true life - and I was called to the CCU for a patient who had just suffered a myocardial infarction and needed a three vessel bypass and at the same time was diagnosed with metastatic colon cancer. And probably the last time I had been in a CCU was maybe 15 years ago, I certainly can't recall. But, the juxtaposition of this fellow being faced with two life-threatening diseases, one of which would kill him very quickly as he collapsed in his driveway, leading to the CCU admission, and one of which would kill him in years to come, became a juxtaposition, if I can use that term again, that really stuck with me, both in terms of decision making, competing threats to life, the personal motivation of the patient, and trying to discuss the time frames with the cardiologists who have very different perspectives on clinical success by what they do. Dr. Lidia Schapira: I thought it was so interesting that you write that you have this hour-long conversation and more with the patient at bedside, and the patient says to you, 'So, are you recommending that we fix my broken heart so I can die of cancer?' And that is just about as direct as it gets. And then you're explaining to the chief resident in cardiology for whom the two to three-month median that you're saying is likely life expectancy for somebody with this diagnosis, it just doesn't seem to be good enough. And there you are sort of juggling time estimates and trying to assign value to time left and time spent without ever having met him before. And then you tell us, and this is the part that I wanted to ask you a little bit about, that you have a splitting headache. How did that moment feel to you? Dr. Daniel Rayson: Well, even walking into the CCU, we get used to our environments, right? I'm sure that you as well, you walk into your cancer center, your home, everybody knows you, you know, everybody knows what everything is. Try walking into the CCU after having not been there for 15 years, and you are like a rat in a maze, completely out of your environment. So I was uncomfortable in the first step into the CCU. It just exponentially increased from there. Once I got to the bedside, face to face and talking in my little zone of oncology, everything seemed to settle. But as the discussion became more complex and all the monitors and all this stuff around this patient, yeah, I had just a pounding headache. And it didn't help talking to the CCU resident, who really had a hard time grasping what I think I was trying to convey. Dr. Lidia Schapira: And so your patient chose to have the surgery, and then he was under your care, you tell us for four years, during which you must have built a very solid therapeutic relationship. So did you and your patient, I wonder, ever go back and discuss what that consultation was like for him? Dr. Daniel Rayson: He was a very jovial kind of fellow with a great sense of humor. So we would come back to it every now and then, but only very glancingly in a way, 'Remember how I looked then, Doc, before your chemo got me? I looked pretty good in the CCU compared to now, right?' That was his kind of attitude as we went through. It would come back to him, but not in a negative way at all. The interaction actually ends up being extremely positive, even that day. And we built on that going forward. Dr. Lidia Schapira: And his last words spoken to you through your colleague in palliative care just made me tear up. We often wonder if we did the right thing by our patients, and he basically told you so. Can you tell us what those last words were and how they felt to you? Dr. Daniel Rayson: Yeah. So this is again all true fact, basically running into the palliative care doctor who took care of him just his last days. And I was turning back to go to the clinic after thanking my colleague and he literally called out, 'Oh, and one more thing. Mr. L told me to tell you that he was really glad he didn't end up dying from a broken heart.' I still kind of tear up when I think about that. It was kind of the ultimate thanks, really. I mean, he was very grateful all the way through, as was his family. That was probably the ultimate thanks. And that stayed with me for a long, long time. Obviously, still has really. Dr. Lidia Schapira: What I found so artful, if I may use that word, is that you take the reader to this very, very emotional, private moment and then you chose a title that couldn't be less emotional, 'Cardio Oncology'. And I remember in the review process we asked you about that. So tell us a little about that choice. Dr. Daniel Rayson: I don't know if I can answer that clearly in a way that's satisfying to anybody except to say that Cardio Oncology has become this sub-practice of cardiology. Many centers have Cardio Oncology programs, research, et cetera. As I was writing this, I thought this has to be the title. This is the ultimate Cardio Oncology. This is it. And I stuck with it despite some discussion back and forth. I still think I'm glad we kept the title as it was. Dr. Lidia Schapira: It's so factual, right? And it's distracting because you read the title and you don't expect this essay, which is all about communication, connection, human relationships, and lived experience. Dr. Daniel Rayson: Exactly. And again, I think every subspecialty or little niche in oncology has got to have those basic communication and the whole story at the heart. And I guess maybe that was part why the title. Dr. Lidia Schapira: Yeah. You just mentioned the word communication. I wonder if you can reflect a little on the art of communication and communication skills for those of us working with patients with life-threatening illness and the art of storytelling. Do you see a connection and how do you experience that connection? Dr. Daniel Rayson: Oh, I really do. I think being open to the story is not only meaningful, but is really imperative to optimize communication. Oncology, particularly in the era of precision based medicine and all the high tech things, is very easily led down a very technological pathway. But in the end it's the patient in front of us, or family, like we all know. And the story is what grounds all the connection, all the understanding of preferences, motivations, decision making. And in the end it's what impacts us as people and as clinicians as well as our patients and families. So I see the story as integral in terms of teaching communication skills and taking time to listen, taking time to feel the story and be open to the story unfolding and realizing that, yes, it is a story. Every single case is a story I think is a helpful way to look at, broadly, communication. Dr. Lidia Schapira: There's another thing that I wanted to ask you, and that is, do you have any idea of how long it takes for the full story to emerge? It seems to me that you've been very patient with the stories you tell. You wait until years pass, sometimes until the relationship is complete, until there's a natural end to the story. How long does it take for these stories that you tell so beautifully about clinical practice actually to mature in your mind and then on paper? Dr. Daniel Rayson: That's a great question. And sometimes I'm very jealous of authors who seem to be able to really churn out work that's important to them. I've learned that's not me. In most cases; it takes a year or two beyond my first note and my phone call to come back to it. And I think what I've learned is that giving it time always, for me, maybe just for me, optimizes quality. Rushing, sending it out too early, just doesn't work. Just doesn't work. For some reason, I need to give it the time it takes, and it's a good one to two years on average. Dr. Lidia Schapira: It's interesting to hear you say that. It's taking me about twenty years to write the story that I'm trying to tell. And so it's good to know that there are some of us who seem to need that extra processing time. As somebody who has been so thoughtful about the stories and practices, how do you see the storytelling helping us sort of stay fresh and find joy in practice as, in a way, an antidote to burnout? Dr. Daniel Rayson: Yes, I think that stemming from a bit of an earlier question, is that being open to the story and the heterogeneity of the experiences that we deal with is affirming in humanity and our clinical practice. I think we can all get very tunnel vision and very tunnel focus so that everything starts sounding and feeling the same, which is, I believe, a prelude to sub-clinical burnout. Whereas taking the time to understand and feel the stories, and looking at people in their situation as stories, is a bit of an antidote to that. I like that word. I like that word. Not fully effective, sure, but, I think, a tool in our box. Dr. Lidia Schapira: My final question is this: after all these years and all this time thinking about it, if you were to walk into that CCU and could replay that scene, would you have done anything differently? Dr. Daniel Rayson: I think the only thing I probably would have taken a couple of extra strength ibuprofen before I ventured into the CCU. Dr. Lidia Schapira: That's so wonderful. 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 ASCO's shows at asco.org/podcast. Dr. Daniel Rayson: Thank you very much, Lidia. It's been a pleasure. 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. Daniel Rayson is a clinical oncologist at Queen Elizabeth II Health Sciences Center.