Listen to ASCO’s Journal of Clinical Oncology essay, “But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care,” by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented. TRANSCRIPT  Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805) For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit. Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him.  For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different. While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions. Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant.  When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients?  I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one’s disease trajectory. Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload.  As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two.  While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities. Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community. There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions. There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter. The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections. As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, “‘But Where's My Doctor?’: The Increasing and Relentless Fragmentation of Oncology Care.”  At the time of this recording, our guest has no disclosures.   David, welcome to our podcast, and thank you for joining us. Dr. David Mintzer: Thank you for the invitation, Lidia. Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about.  Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing. Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer.  So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this? Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down.  Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that? Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff.  But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make.  Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable?  Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years.   Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer.   This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out. Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners?   Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly. Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that. Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything.   We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss. Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in?  Dr. David Mintzer: Well, as you say, there's both benefit and loss involved with this and it does make our lives easier. If you're seeing relatively healthy outpatients month after month in the office, you get to feel oncology is not so bad and you can kind of put that two-week hospital rotation when everybody's in the ICU and having multiple unfixable problems and poor palliation behind you. So you can almost kind of go into denial. And it does make your quality of life easier to be able to just go to the office and go home most weeks of the year.  How are we going to deal with this going forward? I mean, we do have to make the effort. I don't think it's going to go back. I don't think writing this article is going to change the way medicine is structured. This is a more efficient way and in some ways, it may be safer and more high reliability, which are kind of the watchwords. So I'm worried. I don't know where it's going. I think it is going to be a little less personal. But my point is we have to be aware of it and in doing so make the time we have with patients more impactful, be a little bit more aware of our need to support them. Maybe if you're not at the hospital every day, go over once or twice a week, or certainly when there's a big change in event.

Listen to ASCO’s Journal of Clinical Oncology essay, “Afternoons in the Tower of Babel” by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis. TRANSCRIPT Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD (10.1200/JCO.23.00587)  We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week. A patient dying of a toxicity that should have been treatable, but is not. The oncologist's tasks: to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility.  The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning. “So, if our prayers were answered and the lung cancer is shrinking, why are we here?  “It happens this way sometimes,” I hear myself saying, instantly dismayed by my own banality. This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes.  “Explain ‘failing,’ explain ‘stable,’ explain ‘stable failure,’ explain ‘insufficiency.’” My first tries were themselves insufficient. I try again; choosing carefully, using different metaphors: -the heart as pump, -the bone marrow as factory, -the kidneys as filter, -the immune system as … a loose cannon. -the lungs as collateral damage The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough. Daughter-in-law, following carefully, is quick to interject, “But yesterday you said the X-ray is ‘unchanged,’ so why does he need more oxygen?” Did I say that? Yes, the notebook in her lap remembers all. “You say now ‘rest the lungs’ on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle.” Carefully, I unwrap more of our secret lexicon: “Proven infection” versus “infection” “Less inflamed” is still dangerously inflamed. Five sets of eyes, five sets of ears, five sets of questions. And the notebook.  I begin again, choosing carefully. The learning is a process and occurs incrementally. I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part. But words are not all the tools we possess. There is also the language of the body. The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU. With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear. And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why. 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. Barry Meisenberg, who is Chair of Medicine and Director of Academic Affairs at Luminis Health. In this episode, we will be discussing his Art of Oncology article “Afternoons in the Tower of Babel.”  At the time of this recording, our guest has no disclosures.  Barry, welcome to our podcast, and thank you for joining us. Dr. Barry Meisenberg: Thank you for having me.  Dr. Lidia Schapira: Barry, let me start by asking you my now famous question: What are you reading now and what would you recommend for our listeners and readers?  Dr. Barry Meisenberg: I will tell you that, for a very special reason, I've been reading Thomas Wolfe. You know, the author of Look Homeward, Angel, and his final book everyone knows the title of You Can't Go Home Again. But I've been reading them with a very specific view. I'm interested in all the medical interactions and I find them immediately relevant to what I'm doing. And Thomas Wolfe talks about physicians treating dying patients. And the good physicians are also really caring for the family. And there are a couple of just wonderful examples. Would you like me to read you one?  Dr. Lidia Schapira: I would love it.  Dr. Barry Meisenberg: So this is from Look Homeward, Angel when Tom's beloved older brother Ben is dying from post-influenza pneumonia. And part of his family just can't understand it. They can't get used to it. And they keep insisting that the local physician do more. And this doctor who's Dr. Coker in the book, that's not his real name, of course. And he says to the sister, who's pretty close to hysterical. He said, “My dear, dear girl, we can't turn back the days that have gone. We can't turn life back to the hours when our lungs were sound, our blood hot and our bodies young. We are a flash of fire, a brain, a heart, a spirit, and we are three cents worth of lime and iron which we cannot get back.” And I say this that as we learn when we're in the ICU, we see a patient in the bed and we think, “end of life” and families look at that patient in the same patient, the same bed, and think of the young person, healthy lungs and strong desire for life. And we don't always see the same thing. And I just thought that piece of advice by that doctor was wonderful. Dr. Lidia Schapira: That's beautiful. Thank you so much for sharing that with us. Dr. Barry Meisenberg: Thank you. Dr. Lidia Schapira: This is a very special piece. And the first thing that I wanted to ask you about is how did you choose the title? Dr. Barry Meisenberg: I feel, as the readers will appreciate, that we often struggle to communicate with families because of the jargon and of the strangeness of the environment. And although the Tower of Babel is obviously a biblical reference where God punishes humans by scattering their languages so they can't communicate with each other, in the more sort of vernacular sense of that word, it just refers to a failure, an inability to communicate openly. And I think that's what this article is about.  Dr. Lidia Schapira: Let's talk a little bit about what the article is about. I read it as a very moving reflection, very sincere reflection from an oncologist who is heartbroken because he's about to lose a patient to complications of therapy. Help me understand a little bit about your message and how you wanted to communicate the importance of choosing the right words when the message is just so dire. Dr. Barry Meisenberg: It's actually two themes. You mentioned that sometimes when you choose the right therapy at the right time, at the right dose, and bad things happen anyhow that aren't supposed to happen, we take it very personally. And the second theme here is then our role as oncology, which I believe is at times the most important role we have, is to explain this strange environment to sometimes the patient, but also the family. And that means being aware of all the acronyms we're using and the jargon. Knowing that there are other physicians who they may have talked to who will say one thing and be seized upon one little phrase by the intensivist, by the nephrologist, by all our other colleagues. And feeling that it's our job, my job to wrap all those opinions together and to explain what it really means because they're all partial views.  Dr. Lidia Schapira: And also to provide guidance for the family. At one point you needed to explain, but also help the family come to a decision, which is a very difficult decision, and that must have felt very bad for you in a very, very difficult situation in a windowless room next to the ICU.  Dr. Barry Meisenberg: Again, I think it's actually our job. Our job is not just to write chemotherapy orders and order images. Our job is to care both for the patient and make sure the end of his life, in this case of his, is dignified, but also to care for the family, knowing what they're experiencing at the moment and what they'll experience after the death. I'm honored to do it. Some excellent intensivists can do this well. But I also think it's my job to do and I think it's important to teach young physicians that's their job.  Dr. Lidia Schapira: So let's talk a little bit about that because I think for perhaps our generation and for more senior oncologists this always has been part of the job and we've always understood that it's our responsibility to be present. To be present as you, I think you use the word as an ambassador in some ways. To reconcile what they're hearing from other people, to provide a framework for understanding what has just happened, and to get past the technicalities of the information and the words written down in the notebook to really tell the patient and the family and comfort them to understand where they're at. But it's not the way many of our colleagues today view the job. Can you reflect a little bit on that? On whether or not it's really the oncologist who needs to be at the bedside to explain this?  Dr. Barry Meisenberg: Well, by way of background, I am PGY 40, I think that's about right, PGY 40 of people of my generation. So I don't know if it's strictly generational, but I do have a whole view of an oncologist, holistic view, as opposed to a partialist view where we don't go into the hospital, we don't do end-of-life conversations in a hospital. We let the palliative care team do that or let the hospitalist do that. I just think it's not good for patient care. It's also not good for the oncologist because this is why we are viewed as a special breed of physician because we can do this. Other people are afraid of it. They don't like to deal with death or bad outcomes or bad prognosis. And we do it in our routine and people honor us for that. And so if we have a new ethic about this that “Let the intensivists do that or let the palliative care team do that,” we're losing what makes, part of what makes us special. Dr. Lidia Schapira: That's a very interesting thought when we’ll hold and probably need to come back to it and reflect over the course of the day and the next several days. Let me go back to the scene that you give us in this beautiful essay. And you talk a little bit about the notebook, which I found very interesting, where I think it's the daughter-in-law of the patient is carefully recording the words and she's picking up on some what she sees as inconsistencies. Wait, yesterday you said, or last week you said "Get out of bed," and now it’s, “He can't.” You used this word yesterday, but this word today.  Dr. Barry Meisenberg: Right.  Dr. Lidia Schapira: Can you share with us a little bit about how you react in those situations? Because I was just sort of feeling the frustration of trying to say, "You need to drop the pen and we need to just think about what's happening here." Dr. Barry Meisenberg: What you're referring to is this section, when the questioning, when our words are carefully examined, held up for review. Normally, I'm happy to have families write stuff down and record their questions, but if last week I said "stable" and today it's some other term to describe it, well, it is an apparent discrepancy says the notebook. And yeah, a week ago it might have been appropriate, “Get out of bed, get those lungs working.” And here we are five or seven days later, and he's on a ventilator because we need the lungs to rest. So explain that and it's in the notebook. Explain this apparent discrepancy, or another physician said he's doing good, meaning he's not progressive. And I'm saying “You’ve still got respiratory failure.”  Failure is a powerful word, by the way. You’ve got to be careful when we describe heart failure, respiratory failure, bone marrow failure. So this is, whether it's the memory or the notebook, I don't consider it an enemy, but it just shows you how careful we have to be in what we say. And what we can communicate in 15 seconds to a colleague takes much more time, and you really have to use metaphor to explain that. Dr. Lidia Schapira: So let me pick your brain a little bit. You describe yourself as a PGY 40, and maybe that's literal, maybe it's not. But as an experienced clinician, what advice do you have for some of the junior oncologists about how to sort of feel perhaps when they're being challenged in a difficult situation and how to choose their words and sort of cultivate that way of being with,  that presence that can really bring comfort to families? Dr. Barry Meisenberg: That's a great question, and I just hope that we would all approach this with empathy to try and understand what the family is going through. And the article tries to bring that out, that there's a family struggling in a strange environment. And our patients and families may be very accomplished people, but now they're in a new environment that they can't control, they don't understand, so let's care about them as well. And I never take it personally, someone's challenging my advice or my knowledge. That's almost like expected. So that's how I would try and explain our role there.  This particular family wasn't difficult in that way at all, and I hope that didn't come across that way. They were just very concerned and wanted to know and wanted to be educated and looked to me to provide that in a very respectful sort of way. But we certainly have had other families who insist that obviously there's something else better someplace else and some knowledge beyond what I bring to the table. But once again, what you just sort of care- I guess the best word is empathy or compassion for what they're going through.  Dr. Lidia Schapira: Barry, if you can bear to share this information, is this a patient who died of a complication of immunotherapy?  Dr. Barry Meisenberg: That's exactly right. Lung cancer, smoking history, got immunotherapy. Excellent clinical response until interstitial pneumonitis. So like a more than 50% response to the initial, I think just one cycle. And then though, the symptoms of dyspnea and progressive respiratory failure ended up in a hospital and other complications along the way, heart attack and whatnot. So it is based on a real patient, although the conversations are based on accumulated experience. But it was an actual patient and we knew it early, we used high-dose steroids early, and it just didn't seem to make a difference. And then second-line, third-line, therapies, many of your readers will know that these are all sorts of anecdotes, and one of them was tried as well, but just progressive respiratory insufficiency in a way that just like everything else, when there's a response, we don't really fully understand why some people respond and some don't.  Dr. Lidia Schapira: And how do you deal with and how have you learned to deal with the grief that follows losing a patient, especially under these circumstances?  Dr. Barry Meisenberg: Yeah, I don't know that I have learned how to deal with it. I mentioned in the article that I was welcomed into the circle of grief by this family who appreciated what I was feeling. Somehow it's kind of remarkable that some people do that. Some grieving people can understand others are grieving. So I don't really think that I've got a solution other than this sort of banal notion, as I mentioned in the article, that it's always been this way. Bad outcomes, bad things happen, and maybe it's the way of the world. I would feel differently if I had missed something, perhaps, but I grieve, I but don't blame myself and ready for the next patient next challenge.  Dr. Lidia Schapira: I always think it's wonderful when we are the recipients of such amazing compassion from families and those moments really sort of, in a way, rekindle our vocation and our ability to sort of recharge a little bit, to be present for the next family. I wonder if writing about it in a way helped you process this experience.  Dr. Barry Meisenberg: Oh, I think it absolutely does. And I'm so happy that this journal and this society gives us this opportunity and other journals as well. Because processing, which I guess is a modern term, is so important for us. There's a whole interest in reading things of this nature, not overly saccharine and not overly stereotyped because it doesn't always work out that way. But I absolutely feel that we're a brotherhood and sisterhood, and we need to share with each other because these are things we all go through, which I believe is the whole purpose of this section. Am I right?  Dr. Lidia Schapira: You're absolutely right. And you sort of anticipated my final question, which was, as a community, I certainly feel we need these stories and we need to share these stories. But I may have asked you this question in a prior conversation, but can you tell me how you use stories in your career for teaching or for sharing experiences, or reflecting with colleagues or trainees? Dr. Barry Meisenberg: I think they're a great opportunity, and obviously we want to encourage young people and medical staff of all ages to write their own and share. But we have a program specifically for residents and trainees where we look at some poetry or very short essays, some of the journals about these kinds of issues, and then reflect. One of them for example is how do you overcome physician errors, and a whole set of readings and poems about errors that have been made and how they linger with you your whole career. Someone wrote a beautiful line, "worn smooth by mental processing," because in general, we don't give them up. So these kinds of things I think are very helpful in reflecting and helping people understand that this is something we are all going to have to face and we’re all going to have to deal with in our careers. And you can’t hide it, you’re going to deal with it so we can’t hide from it and it is an effective coping measure. Dr. Lidia Schapira: Well, thank you so much for sharing your thoughts. My heartfelt condolence on the loss of your patient. Dr. Barry Meisenberg: Thank you. Dr. Lidia Schapira: And keep writing. 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 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. Barry Meisenberg is Chair of Medicine and Director of Academic Affairs at Luminis Health. Additional Publications: Questions for the Oncologist, by Dr. Barry Meisenberg and accompanying podcast.

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

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,

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

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

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:

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.

Listen to ASCO’s Journal of Clinical Oncology essay, “How Are You, Choi-Seonsaeng?” by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. The essay is followed by an interview with Choi and host Dr. Lidia Schapira. Choi discusses how navigating US healthcare is similar to acclimating to a foreign country. TRANSCRIPT Narrator: How Are You, Choi-Seonsaeng?, by April Choi, MD (10.1200/JCO.22.02103) It was not until Mr. Yoon’s nurse contacted me (an intern eager to flex her Korean skills) for an “agitated patient who is trying to leave the hospital” that his limited knowledge of English became apparent to everyone. Mr. Yoon was sent down to the radiology department for an additional computed tomography scan earlier that day. He had been admitted for partial bowel obstruction secondary to a colonic mass. After his scan was completed, a technician reportedly told him that he was “good to go.” As soon as he arrived back in his hospital room, Mr. Yoon, happily thinking that he was being discharged, began to pack his belongings and changed out of his hospital gown. The nurse, aware of the team’s plan for his upcoming hemicolectomy but ignorant of what had transpired downstairs in radiology, interpreted this as the patient trying to leave against medical advice. I ran into his room, ready to de-escalate the situation, only for him to turn happily around and ask in Korean, “how are you, Choi-seonsaeng?” (seonsaeng means a teacher, but here it is used as an honorific for respecting the person to whom it is addressed). His hospitalization was already difficult because of a lack of family support; his surrogate decision maker was a fellow church member of whom he had “asked for a favor.” To add to this, his English was just good enough to cause more harm than good. Had he not spoken any English, more people would have defaulted to using an interpreter. Instead, he knew just enough English to convince his doctors and nurses that he understood his treatment plans, and they would leave his room each morning satisfied when he would smile, nod, and say “no questions.” I could empathize with the struggle that he had in this hospital. As a 1.5-generation (those who immigrated before or during their early teens) Korean immigrant growing up in California, I quickly became an expert in appearing unfazed by something, even if that thing seemed very odd to me at first. Things like adults asking me to call them by their first names. Following my friend into their living room without taking off my shoes. Someone telling me, “I see where you’re coming from,” when I had been sitting down and talking to them for the past 15 minutes—I was not coming from anywhere! In most of these situations, my strategy has always been to smile, nod, and try not to say anything that might sound incredibly stupid. I am fairly certain others implement similar strategies when navigating different cultures as they travel in foreign countries. After all, most of us do not harbor the communicative finesse that Anthony Bourdain had while interacting with the locals in Parts Unknown. For many of us immigrants, “smile-and-nod” ends up being the default response in unfamiliar or uncomfortable situations, such as in hospitals. I can attest that this sense of “foreignness,” or “Asianness,” never quite goes away. Although my parents would increasingly comment that I “act like an American,” and even after I had been living in the United States longer than I had in Korea, my Korean-ness stuck around. Sometimes more, sometimes less, very much like the awkward lilt in my English that made people ask, “so where are you really from?” I would prick my own thumb with a needle if I had indigestion because I was told it would get out the bad blood. When I got nauseous, I would make myself jook, or rice porridge, because it was the only thing my stomach could tolerate. I continue to identify as a Korean—maybe Korean American on some days, but never fully just American. On my last day of service, Mr. Yoon was still waiting to get his hemicolectomy. As I explained the general plans involving surgery followed by chemotherapy, he asked if there was any way he could have some jook before his upcoming hemicolectomy. He had been ordering oatmeal, but it “wasn’t right.” I could only eke out, “I’ll look into it,” before I ran out of his room and straight into the unit’s physician’s workroom. There I started crying and babbling incoherently to my non-Asian co-intern about jook and how I simply must get some for Mr Yoon. Although crying in a workroom for sleep-deprived and overworked interns might have been a rite of passage in my residency, I cried because it had finally dawned on me that Mr. Yoon was terrified of his diagnosis. This gentleman, who was more than twice my age but still made my day by referring to me as a seonsaeng, had been smiling and nodding his way through the uncertainty of his cancer diagnosis and what was to come. He wanted something he was accustomed to, something he could bank on to make him feel better. For him, like many Koreans I know, it was the jook. Unfortunately, he had no friends or family checking in on him, let alone bringing him food that he enjoyed. For him, finding a way to get some comfort through jook was more important than hearing strangers give reassurances of “everything will be fine” and “we have a plan.” On that day, I was reminded of when I moved to a strange new city for medical school, forlornly eating dinner by myself when instead I could be surrounded by my family and talking about how our day went. I understood the sadness you feel when you are sick and too tired to do anything, but you are cooking your own jook because your mother is not there for you. I empathized with wanting to eat food that you are accustomed to and the distress you feel when you are unable to find it because of where you are or the situation you are going through. In my family, food is both comfort and love; sharing food is how I know I am cared for. For Mr. Yoon, it was not just about food but rather the lack of support he felt during his upcoming cancer treatment. I ended up getting some jook delivered to our hospital that day. I recall muttering something about wishing him an uneventful surgery as I tearfully handed him the plastic tub of jook. Several months later, I was paged to the hospital unit and found Mr. Yoon waiting for me, skin duskier than I recalled but overall appearing well. He told me that on being discharged after surgery, he connected with a Korean-speaking oncologist and completed his chemotherapy. His oncologist told him his recent scan did not show any evidence of cancer. He said he had been meaning to visit me because he wanted to thank me for the jook I had given him before his surgery. We talked for a bit before I had to leave for my afternoon clinic—that was the last time I saw Mr. Yoon. Several years and a worldwide pandemic later, I find myself fortunate to be training in oncology in a strange new city again. I am once again reminded of how difficult adjusting to a new area is and then think about how more difficult it is for our immigrant patients to navigate their cancer treatment. Undergoing cancer treatment is very much like immigrating to a different country. You cannot be 100% sure of what may happen in this new country, and no amount of second-hand information from other people can adequately prepare you for what lies ahead. You do not quite grasp the language, so you smile and nod your way through each doctor’s visit and hope things will turn out alright. When you couple this with an actual language barrier, it may feel like being lost in a foreign country without being able to ask for directions. It is important for us oncologists to dig deeper and understand the cultures from which our patients come. Instead of asking if they are eating well, ask what they enjoy eating. Are they able to eat the food they were eating before? Or are they navigating a new diet planned by a nutritionist who does not know the difference between oatmeal and jook? Have we considered what a patient’s family does to provide support, on the days when chemotherapy is too rough and the nausea is too bad? We may be surprised to find what is hidden behind the polite nods and small smiles.   Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and a Professor of Medicine at Stanford University. Today, we're joined by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. In this episode, we will be discussing her Art of Oncology article, ‘How Are You, Choi-seonsaeng?’ At the time of this recording, our guest has no disclosures. April, welcome to our podcast and thank you for joining us. Dr. April Choi: Good morning. I'm glad to be here. Dr. Lidia Schapira: Well, it's afternoon in California, so, it's wonderful that you are someplace where it's morning. Where exactly are you today? Dr. April Choi: I'm currently in South Korea visiting my relatives. Dr. Lidia Schapira: That's wonderful, and brings us to the heart of your essay, which is a moving narrative that describes your interaction when you were a medical resident, with a patient who is a Korean immigrant. Tell us a little bit about the motivation that led you to write this article and then share it with others. Dr. April Choi: First of all, I'm very happy that you enjoyed this article. It comes from my heart, and I've been meaning to write this article for many years now, actually. And I wrote this piece initially a year after I saw Mr. Yoon again. I think one of the things that I wanted to share with everyone is how difficult it could be as an immigrant to navigate the complexities of the hospital, even if you do speak a little bit of English. And I think the cancer part really complicated his care, and I really wanted to make sure that people who might not have this interaction, because they grew up in the United States, or have never encountered someone who is from a different culture, to be able to experience, second-hand, what it feels like to treat someone who is of the same culture, but might not have the linguistic sophistication or experience working in healthcare system. Dr. Lidia Schapira: You start off the article with a little dose of humor that I found very refreshing - turns out that your patient, Mr. Yoon, is told by an X-ray tech or a CT tech that, "He's good to go." And he interprets that as, "He's good to leave the hospital", only to find that the nurse misinterprets his preparation to leave as, "He's leaving against medical advice." And that's when you enter the story. Bring us to the bedside; tell us a little bit about your interactions with Yoon. Dr. April Choi: I think, in retrospect, it might have been very funny. I do have to say, when it happened, it was a very stressful time for me. I was not in that hospital unit at all until I got this call, when the nurse was very distraught and said, "You need to come to bedside. He is trying to leave, he's agitated, he won't listen." And as I had written in my article, I ran. I ran towards his room because by then, we had developed some sort of a relationship where he would actually ask me, "Oh, what was that other doctor talking about?" So, we had a really close relationship, and when I heard that he was agitated, I couldn't believe it because he was one of the nicest patients that I had seen before. And for me to find out that he was under the impression he was being discharged after all this, I was immediately reminded of my parents, and how they speak enough English, where they can get by, but at the same time, I don't think they would be okay in a hospital setting. And I think that goes for a lot of 1.5 generation, as I talked about in my article, as well as the second-generation immigrants, where they understand everything, but for their parents, it's not the case. Dr. Lidia Schapira: So, let's talk about your parents and our patient here, and then those who perhaps just speak a little to get by. And it's easy to think that in a hospital setting where there's so many time pressures and everybody wants to be efficient, sometimes, things just slip by, and we don't take the time, perhaps, to ask as many questions, because we don't have an interpreter at bedside, or because it takes a little bit more effort. You give these examples so beautifully in your essay. What are you doing now that you're an Oncology fellow, or future Oncologist, to communicate with patients? Dr. April Choi: I actually do a lot of drawings. I think drawing is one of the strongest ways someone can communicate. So, a lot of the times I have my multicolored pen, and I will draw whichever they need to - if it's esophageal cancer, I will draw them where their cancer is located-- right before my vacation, I talked to someone about radiation fields - I will draw little rectangles, and talk about how, no, reradiation is not possible, for example. I do try to use very simple language, and when I say simple, I don't mean to say that they are any less intelligent than we are because a lot of our patients, in their own language, they're amazingly intelligent and they understand everything. But trying to refrain from using things like, "You're good to go", or some examples that people who never grew up in the U.S. might not know about, such as, one of the examples I had done was, "I see where you're coming from", and everyone seems to know that, except for the immigrants. Because, “What are you saying? I was sitting next to you; I was talking to you. What do you mean by you see where I'm coming from?” And those things, I think, people don't stop and think about, but once you say, what is the literal translation for this? And say, “Is this something, if I had heard it for the first time, something you understand?” And just taking that time to say, “Maybe this is not the most commonly used phrase.” And then, using a more direct language can really help the patients who are of limited English proficiency. Dr. Lidia Schapira: You used the expression 1.5 generation, and I know that when we reviewed the article, some of us had never heard that expression. And then, you explained to us that this refers to those who came as teens, or young enough so that they were quick to learn and assimilate into the new culture, but sufficiently grown to really also be firmly rooted in the mother culture. Tell us a little bit about where you are with this, and how this has shaped the way you've approached your life as a medical student, as a resident, and now, as an Oncologist. Dr. April Choi: I think it's impossible to talk about my medical education without talking about how I was brought up. I was actually born in the United States but moved to Korea when I was less than a year old. And I stayed there until third grade when I moved to California for the first time, stayed until fifth grade, and I moved back to Korea until middle school, then I moved back to California to start high school, and I've been here since then. So, this moving back and forth, I think, did create a lot of confusion when I was growing up because the two cultures are very different, and the medical system is also inherently very different compared to Korea. And I come from a place where in Korea you could go see a doctor if you're sick, and when I was living in the U.S., our family didn't have health insurance. So, the first time I saw an American doctor was when I was in high school. And at that time, my brother had dislocated his shoulder, and I remember my mom bringing him to the emergency department, University of California, Irvine. And at that time, she was very polite, she would say, "yes", and smile and nod to whichever the emergency doctor had told her about the dislocated shoulder. But I remember her always turning to me after he left, to say, "What about this? What about the medication?" But she didn't feel comfortable to interrupt this doctor who had come in, and ask about the things that she was worried about - this was her son. He had dislocated his shoulder for the first time. But for her to feel culturally uncomfortable to interrupt them and ask questions, and have all of her questions answered, I think really stuck with me. Dr. Lidia Schapira: I hear a lot of emotion in your voice when you talk about this, and you bring up issues of safety for people who are vulnerable. How are you dealing with this now that you have so much power, as an oncologist whose patients are placing their life in your hands? Dr. April Choi: Honestly, I feel blessed and grateful that I'm in a position where I can change things for the better. I'm currently invested in research looking at Asian-American disparity in cancer patients. And having that opportunity where I have the medical language and knowledge to explain things better for patients who are of Korean-American descent, I think is a very encouraging and powerful motivator for me to continue on. So, I think my career trajectory is for me to advocate for the, you know, Korean-American, as well as the other Asian-American patients who are undergoing the same situation that Yoon and my family were going through. Dr. Lidia Schapira: It's a beautiful story that links your attachment to culture and family, and provides the inspiration that is now driving your career as a researcher, and somebody who really is going to use all their knowledge to advance this field. I imagine your family must be enormously proud, but let's just finish by talking a little bit more about this lovely gentleman, Yoon, and his need for jook, that you've told us is not porridge, is not oatmeal but is comfort food and the comfort food that you felt he needed. Tell us a little bit about that - in how food can provide solace, and all the efforts that you went to, to give that to your patient who you felt was really quite frightened. Dr. April Choi: So, if you search jook and Google, or try to get additional information, they talk about it as if it's the same thing as congee, which is the Chinese version of rice porridge. So, jook actually isn't just made out of rice; it could be made out of combinations, or different proteins. Obviously, rice does play a main factor, but it could be made out of beans, for example, and other ingredients. But the Korean thought is that if you're sick, you need something that's easy to digest and something that's been cooked slowly so that your body doesn't have to do the work. And one of the main things is the jook. We actually have many jook specialty shops in Korea, often close to different hospitals, for example. It's the main food that's served by the hospitals if you're in-patient, although you might have a lot of different Korean food when you're hospitalized here. I think my experience comes from the fact that if you're scared, you want something that you already know, or you're comforted by - almost like a safety blanket. And when someone can't even get the basic food that they're used to eating-- if you're used to eating rice every single meal, and then you plop them down in a hospital that gives you toast for breakfast and eggs, and other ingredients that you're not used to, I don't understand how people can expect to feel at home. Is it just because someone says, "Make yourself comfortable"? It doesn’t mean that you have the opportunity to make yourself comfortable if the main food that you eat is not available? And that is something that I wanted to emphasize - that food we think is so easy to arrange for-- we have dieticians, we have nutritionists in the hospital, but we don't really think about patients' comfort that way. And I think it's something that I think about a lot when I'm seeing a lot of the GI patients here, it is a field that I'm interested in. And for people to keep on losing weight, and for us to keep on asking, "Are you eating enough?" I wonder if that's enough because in Tufts Medical Center, where I'm fortunate to be training in, there's a very significant Chinese-American population. And anecdotally, or at least my experience has been that patients will say, "Oh yes, I'm eating a lot", or nod, and smile and say, "Yes". But if you ask the family members, they say, "Oh, they don't eat the things that they used to." And they don't tell us this because they don't want to burden the doctors with less important things. But I do think this is very important, and it's something that we need to really talk about, and try to find ways that we can make them feel at ease, and comfort them while we're maintaining whichever treatment that we are giving for these patients. Dr. Lidia Schapira: So, April, this has been a lovely conversation that reminds us of the importance of good communication, communication across cultures and barriers, and just taking the time to help our patients really feel safe and welcome. April, we have time for one last thought. Dr. April Choi: I do want to say that eventually, many years down the road in my career, I do hope to have a situation where instead of me having to explain Asian-American cancer disparity, that we have an opportunity to say Asian-American cancer diversity; that it's not a matter of someone getting less care, it's more important that we get different types of care - a diverse type of care that's catered towards Asian-Americans. Dr. Lidia Schapira: Well, with that lovely thought, I will leave our listeners until next time. And I want to thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe, so you never miss an episode. JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. April Choi is a Hematology and Oncology fellow at Tufts Medical Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Chasing Milestones” by Dr. Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. The essay is followed by an interview with Govindarajan and host Dr. Lidia Schapira. As a young physician, Govindarajan shares his personal and professional experiences as a cancer patient with non-small cell lung cancer and the importance of shared decision-making between oncologists and patients.   TRANSCRIPT Narrator: Chasing Milestones, by Ameish Govindarajan, MD (10.1200/JCO.22.01379) You always remember the moment your world comes to a halt. Everything comes into stark reality, especially the inane—the socks you were wearing or the type of ceiling tiles over your hospital bed. I lay there alone, a medical student in my 20s, chest tubes emerging from my side. My doctor had just informed me that I had 6-8 months to live. I can still picture those ceiling tiles. What started as an innocuous, yet persistent, cough proved resistant to routine treatment and eventually warranted a computed tomography scan. A cavitary lesion in my right lung raised the specter of more serious possibilities. A bronchoscopy and video-assisted thoracic surgery confirmed the unthinkable—I had stage IV non–small-cell lung cancer. As a physician now myself, my mind often returns to that hospital room and how the discussion of my disease, my mortality, and my impending death unfolded. My oncologist at the time outlined my grim circumstances: genomic testing could maybe provide some hope, while palliative chemotherapy would only delay the inevitable, as I would be unlikely to see my next birthday. While waiting for my genomic testing results, I reflected on my relationship with my care team, did I feel heard? Perhaps they were right; I would not see my next birthday, but with pieces of my diagnostic puzzle pending, I still had hope. I was a nonsmoker and in excellent health, more important, being a young South Asian man would prove to be a factor that predisposed me to the genomic alteration that would be found on testing.1 In a twist of fate, it was revealed that I had an anaplastic lymphoma kinase gene rearrangement, a result found in fewer than 5% of patients and one that would forever change the trajectory of my care.1 My life as a patient with cancer and a survivor had begun. The past decade has brought with it a revolution in cancer treatment. The new era of targeted therapies, genomic testing, biomarkers, and immunotherapy has extended patient lives and provided remarkable insights into this life-altering disease. These rapid advances have also brought unexpected challenges, including the provision of care far beyond previous median survival times. As we embark on this new era of expanding treatment options, the importance of shared decision making will become even more critical to patient care in oncology. As doctors and patients work together to plan treatment, integrating the ever-expanding array of tests and therapies, consideration of each patient’s values, goals, and concerns will remain paramount. As part of this model, patients are invited to be part of a treatment team, to learn about their disease, to outline their hopes and fears, and to help contribute to decisions that will guide their cancer trajectory.2 This is not new ground of course; the shared decision model has been embraced by a field that has been moving away from its paternalistic roots. Great strides have been made in promoting patient autonomy, clear communication, and shared responsibility in treatment decisions, with programs such as VitalTalk and the 1-2-3 Project at Memorial Sloan Kettering Cancer Center helping to guide the development of effective communication skills among the next generation of oncologists.3,4 Shared decision making has become an integral part of the doctor patient relationship, helping to recognize and acknowledge the burden of disease, and providing support on the basis of an individual’s needs, values, and aspirations.2 Perhaps in part due to the shock of my diagnosis, those first experiences with my oncology team had left me feeling alone and without support. What I had imagined would unfold in such dire circumstances as a medical student did not become my reality as a patient. Throughout my training, I had witnessed the transformative power of the doctor-patient relationship and its ability to inspire and engender hope, yet I felt no such potential in my own care. Although every patient is different, and entitled to their own care preferences, I found myself seeking a team that would view and treat me as a partner in this unpredictable journey, as a young person with goals and aspirations and not one solely defined by a disease. Care on the basis of a shared decision-making model has been shown to help patients, especially during the beginning stages of treatment. Through these discussions, patients have reported an increased level of trust in their physician, a lower level of anxiety, and a higher level of satisfaction with their treament.2 Despite these efforts, a recent study found that there can still be a misalignment between what patients and doctors consider most important during their consultations.5 For example, patients reported that discussion of post-treatment quality of life was most critical to them, while clinicians continued to focus heavily on clinical outcomes, and less than half of the patients felt that their personal priorities and future plans had been openly discussed.6 Such studies may reflect the lingering hesitancy among some patients to voice their concerns or to feel empowered to guide discussions. In a recent study in which patients were asked about their discussions with their oncology team, 81% felt they had been properly informed of the short term side effects of treatment, while only half considered the discussion of long-term side effects adequate. Notably, less than half of the patients had discussed their day-to-day priorities with the oncology team, and only a third had discussed their future plans.6 Indeed, patients still perceive conversations concerning quality of life and future planning to be often overlooked or unaddressed, and few report that their preferences are discussed before treatment plans are being finalized.6,7 This was true for me at the time of my own diagnosis. I recall feeling lost and unsure how to speak so that I would be heard. Despite my medical background, I did not know how to voice my hopes and fears as a patient, what questions were appropriate, and what role I should play in guiding my treatment course. Early in my postsurgical recovery, while I was waiting to begin treatment, I spoke with a close family friend, a brother figure who was a physician. I was candid in discussing my feelings about my care team and ruminating on ways in which I could address this issue. “I think you should get a second opinion.” I stared at my friend, as it had not occurred to me, in my state of turmoil, to consider a further opinion until this moment. He went on to describe a specific doctor who was a leader in the field of thoracic oncology. “I think it’s important that you consider reaching out to her team. They may be able to help you find what you are looking for.” It was this conversation that drove me to seek out a care team that was more aligned with my own needs, to find a collaborator and doctor who could help guide me as I battled this disease. My new oncologist’s first question was, “When are you applying to residency?” This was the first time a doctor had welcomed into the room my goals and aspirations. I felt like a person rather than a patient and that my cancer was only part of my identity and journey. Our discussions moved fluidly between my treatment options, disease statistics, and my own desires and fears, embodying the shared decision making that I had hoped would imbue our relationship. I can’t help but feel deep gratitude for my friend. What may have started as a simple conversation changed the trajectory of my care and, perhaps, its ultimate outcome. I had undergone 8 months of targeted therapy with crizotinib when a new set of scans revealed disease progression. Shocked and overwhelmed, I was quickly transitioned to receive a course of systemic chemotherapy. Midway through my chemotherapy course, my oncologist presented me with an unconventional idea. A phase I clinical trial examining a new targeted therapy had opened and she believed this may be my best chance—to stop my chemotherapy and join the trial. As we discussed her recommendation, I realized that making such a decision with poise and confidence was only possible because of the trust we had developed, the time spent discussing my treatment trajectory, and the recognition of my own personal needs and goals. Although unconventional, I abandoned standard-of-care treatment and joined the trial—a decision that remains the reason that I am alive, writing this today. My story is paradoxical. While becoming a doctor, I also became a patient. What I felt was most important as a patient did not always mirror what I felt as a physician in training. It wasn’t until my intern year that I began to fully appreciate how difficult it was to engage in shared decision making consistently and purposely with my patients. Ms A was a 78-year-old woman with concomitant bacterial pneumonia and bilateral metastatic pleural effusions from breast cancer. Her cancer had recurred and metastasized to her bones, leaving her in insurmountable pain. In my naivete as a trainee, I began to formulate possible treatment plans and clinical trials that would give her more time, to generate options and treatment algorithms. It was my patient who stopped me, responding to my extensive planning with “No, sweetheart, this isn’t what I want. I’ve lived a wonderful life. I’ve seen my kids grow and I’ve held my grandchildren. I just want you to help my pain so I can be at peace.” In my haste to give this patient my own version of hope, I had made decisions about her care without aligning myself with her or her goals. It was a humbling moment. Despite my experience as a patient, I had overlooked the unique life experience and goals that this patient brought me. Perhaps in retrospect, my surprise only emphasizes the bias that we can bring to these moments and the effort we need to put forth to engage in shared decision making and to honor our patients’ wishes. As treatment regimens continue to extend survival, there remains work to be done to promote patient partnership and shared decision making.2,6 Indeed, in minimizing the role that our patients play in their treatment planning, we can inadvertently dismiss the fact that cancer is now interwoven in their life trajectory. When the term was first coined in 1982, shared decision making was born out of the desire to include and promote personal well-being and self-determination among patients.8,9 Over time, the shared decision-making model has been adopted as standard of care throughout medicine, honoring patient autonomy and the growing desire among many to be more involved in their own care. Pilot programs are emerging that prompt oncologists to partner with their patients and to have purposeful, early, and frequent discussions about treatment goals, regardless of stage, prognosis, or treatment phase.4 Numerous studies are now focusing on patient perspectives of shared decision making models and how they may be improved, and we as physicians are willing to listen and grow with this feedback.2,5 I often consider how my own disease course could have been different. If I did not have a trusting relationship and partnership with my oncologist, would I have been willing to join an early-phase clinical trial? This partnership has served as a teaching point for what shared decision making—and the trust it engenders—can achieve. A clinical trial, and the targeted therapy it was testing, saved my life and enables me to sit here and write this story. I currently have no evidence of disease but move through life with uncertainty. I continue to create new milestones as I achieve those before me—remission, another birthday, residency, and applying for fellowships, all within an ever-changing reality. By embracing my roles as a patient and a doctor, I have been gifted unique insights into the critical nature of shared decision making and what physicians can do to build stronger connections with patients. I intend to use this gift to help every patient I encounter on this unpredictable journey. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor, for Art of Oncology, and a Professor of Medicine at Stanford University. Today, we're joined by Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. In this episode, we will be discussing his Art of Oncology article, ‘Chasing Milestones’. At the time of this recording, our guest has no disclosures. Ameish, welcome to our podcast and thank you for joining us. Dr. Ameish Govindarajan: Hi. Happy to be here. Dr. Lidia Schapira: Let me start by asking you what drove you to tell your story, and then decide to share your story so publicly with an audience of clinical oncologists. Dr. Ameish Govindarajan: Yes, absolutely. My perspective is very unique, not only as a patient, but as a physician, and I felt that my story highlighted the aspect of oncology that is often not talked about; where there's a bond that is created between the oncologist and the patient, and focusing on the goal to get to the next milestone for the patient and the family members. Dr. Lidia Schapira: That's beautifully said. And in your essay, you tell us that you have been gifted unique insights into the patient-doctor relationship because you've experienced it but from both sides of the bed. Can you tell our listeners a little bit about what it was like to be a young student and be told you had this disease, lung cancer, that came as a total shock? Dr. Ameish Govindarajan: Yeah, I still remember that moment. I think my whole world just crashed down upon me, and I was very fortunate to have my family and also close family friends that were physicians themselves, to kind of help me navigate these uncharted waters. Dr. Lidia Schapira: And in your essay, what I found so moving is that you said that, what helped you craft this very therapeutic relationship with your oncologist, the second oncologist in this story, is that this person walked in and said, "Hey, what are your plans as a person?" And saw you as a whole person, not just as a body with a disease. How did that feel to you in that moment? Do you remember that? Dr. Ameish Govindarajan: Yeah. I think it's a moment that's still embedded in my mind, and I often remind myself that that is one of the special moments of my life, in my career, and in my journey as a patient. It was uplifting. I felt heard for the first time, and where I wasn't defined, not by my diagnosis, but I was defined as what I was trying to achieve, and what I was trying to become; which is a physician, and I think that was a really powerful moment with me and my oncologist. That opportunity created and essentially fostered an environment of openness, and I was tremendously grateful for that. Dr. Lidia Schapira: It sounds like a memorable and beautiful moment. And you talk a little bit about the trust that was established also - your goals were aligned, your oncologist saw you as the person that you are, and you defined these milestones. And then you said that at a critical moment, your oncologist offered you participation in an early-phase clinical trial, and it was because of that trust that you feel that you actually accepted that opportunity or challenge that has worked well for you. Tell us a little bit about that. Dr. Ameish Govindarajan: I still remember I was receiving systemic chemotherapy at that time, and I remember her bringing up this idea, and she said, "We have this clinical trial, and I really believe that this would be the right answer for us." And I still remember that - where she used "us", and that it was hard to let go of standard of care treatment. But because of our relationship throughout this entire journey, I entrusted her with the unknowing and living in that uncertainty, and I think I often come back to the saying, "Fear and faith don't sit in the same bucket." And I chose faith, and I chose faith in Science. I chose faith in what my oncologist wanted for our journey together, and I think it was a very powerful-- and it's a tremendous moment now sitting back and reflecting on this, that, what a right decision it was. Dr. Lidia Schapira: Well, you look like the picture of health, right now. So, Ameish, you've chosen to be very open about your cancer diagnosis. And this is something that every person needs to negotiate, how much they want to disclose with their peers, or coworkers, or mentors, even family, and how much they need to keep private. How did you decide how much information you wanted to share with others, and who do you share it with? Dr. Ameish Govindarajan: I battle with that every day. Self-disclosure, or disclosing my diagnosis is often not, in generally my encounters, because that's not what I'm there to do. I'm here to hear their story, and understand where their next milestone needs to happen. But I generally have discussed my stories to my peers to remind that this isn't just an order. It is so much more and completing Internal Medicine when you actually obtain a consult and you're walking down to the emergency room, you have a list of questions and order sets that you're going to place before you pull back the curtain. And when I tell my story, it's in that idea of, before we pull back that curtain, let's remind ourselves to align to the goal of what that patient needs, which will create and foster a better disposition in the long run, and they'll understand their diagnosis and disease process so much better. Dr. Lidia Schapira: So, I'm hearing you say, and from your writing, I gather, you are a strong believer in good communication, and communication that is open, and frank, and honest, and supportive. How do you think that your experience as a cancer survivor has impacted on your attitude towards your patients in your role now as a physician? Dr. Ameish Govindarajan: I think that the most powerful tool that we have is being completely transparent, but at the same time taking the time to really answer their questions. And by sharing space with them, and focusing on not just the clinical outcome, but how they will cope with this new diagnosis that is put on the EMR, and we're about to prescribe medications for, or recommend them to see another specialist. And what our job is, to make sure that we meet their metric, that we actually empower them to be their own advocate, and in order for us to actually have this advocacy being fostered, is us providing all the information that they need to make the right decision, not only to themselves but to their family members as well. Dr. Lidia Schapira: In your essay, you actually tell a story where you as a physician were entrusted with the care of this older lady who had an advanced cancer, and you were thinking about all of the options for her, and she just stopped you and said something like, "Listen, sweetie, I've lived my life. I just want to be comfortable." And you said that was a bit of an aha moment for you as well, because you understood in that moment, that you were thinking about perhaps what you would want, instead of having listened and internalized to what your patient was saying to you. Tell us a little more about that. Dr. Ameish Govindarajan: Yeah. I often think about that moment in my training because I was just starting, I was an intern, and I was a really tenacious intern who felt I wanted to make this change happen in real-time for this older patient with metastatic breast cancer with recurrence, and it was a humbling moment for me to really reflect on, that sometimes our goals, even despite what we want, we carry bias. And we hold bias to even our treatment strategies, our treatment plans, and the first thing that we have to do is again ask the patient and align to their goal before we actually make a treatment strategy. Dr. Lidia Schapira: Let me conclude by asking you a couple of questions about where you are right now in your life, in your medical training. And first, the question I wanted to ask you is, do you consider yourself a cancer survivor? Dr. Ameish Govindarajan: I do consider myself a cancer survivor in the setting of non-small cell lung cancer, and having metastatic stage four non-small cell lung cancer, you know that it's a diagnosis that you'll carry forever - there's no curative intent in that setting. But for me, I'm empowered every day, and every encounter I see with a patient, that there's hope, not only in the treatments, there's an opportunity in every encounter. Dr. Lidia Schapira: And are you planning to be an oncologist, or are you already an oncologist? Catch us up on your training. Dr. Ameish Govindarajan: I'm currently a post-doctoral research fellow at City of Hope, and my plan is, I'm currently applying for Fellowship in Hospice and Palliative Medicine and with the plan to also go into oncology as well, to be at the intersection of supportive care and oncology, focusing on improving quality of life metrics for patients afflicted with cancer. Dr. Lidia Schapira: That's really inspiring to see how those unique gifts, as you call them, that you were taught from your experience, are now shaping your professional goals. It seems to me that you're in such a great position to really advocate for the patients that you will treat, and to help us understand the science of shared decision-making that is absolutely essential for patients living with this disease that we're all treating, called cancer. So, thank you so much, Ameish. I just wanted to give you an opportunity to say some final comments or a message for our listeners. Dr. Ameish Govindarajan: Yeah. Well, I just wanted to say, thank you so much for this opportunity. I'm truly grateful to share my story. And I think that if we remove not only, or we incorporate the idea of aligning to a patient's goal, we will actually obtain better treatment outcomes. That's what I feel. Dr. Lidia Schapira: Thank you very much. And on that note, let me say thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you never miss an episode of JCO's Cancer Stories: The Art of Oncology, which 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. Ameish Govindarajan is a post-doctoral research fellow at City of Hope Comprehensive Cancer Center.

Listen to ASCO’s Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment. The interview starts at 06:15 TRANSCRIPT Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh (10.1200/JCO.22.02000) It was the end of a long day in clinic. There was a knock on the door to my office and my assistant’s head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days. I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list. He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future. His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.” He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together. It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing. I called him in to my office. He looked great! He greeted me with a big smile and a hug. We went through his medical history. I examined him and looked at his laboratory results. Everything looked perfect. Avi was relaxed and chatty, asking me about my work and my kids. I was going quietly crazy waiting for the punchline. I took a deep breath and asked him: “How’s Talia?” He smiled and pulled out his cellphone. He showed me picture after picture of a beautiful 3 month old baby girl. “This is Lia,” he said. “I thought you deserved to know.” The tears sprang to my eyes. “How?” I asked. He explained that he had eventually acquiesced to Talia’s pleas. She became pregnant with sperm from a donor. He said that the pregnancy for him was nothing short of terrifying, but that as soon as Lia was born, it was obvious to him that she was his. I was overwhelmed with emotion. I realized that I had been suppressing a tremendous feeling of guilt around what had happened to Avi (and Talia). The feeling of guilt was not foreign to me. I had experienced guilt around the death of a patient or around mistakes, real or perceived, that I had made. Avi, however, was cured of his disease, and I had done nothing wrong. This was an altogether different kind of guilt: one less spoken of and less obvious. The knowledge that we as physicians are able to cure patients from cancer is humbling. The fact that we cure them but leave them with life-long and life-changing side effects is devastating. I do not know how much Avi understood what he had done for me by coming in that day. During that visit, he was treating me and not the other way round, and the healing effect was enormous. I possibly overdid it in my reaction to Avi in my office that day. But as he got up to leave and I thanked him for taking the time to share his news, I think he knew. In the years since, I have learned to ask patients to call me when they are unwell, but to please remember to also call or text me when they are feeling better. There are many who have taken this very seriously, and those messages are often a tremendous source of inspiration and reassurance, especially on difficult days. To Avi and to all my other patients who take the time to call to say they are feeling better or to share some piece of good news, who are able to see the person in their physician, and understand my need, I thank you. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You'll find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we're joined by Dr. Ilana Hellmann, Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel. In this episode, we will be discussing her Art of Oncology article, 'Guilt and Gratitude'. At the time of this recording, our guest has no disclosures. Ilana, welcome to our podcast and thank you for joining us. Dr. Ilana Hellmann: Thank you for inviting me, I'm delighted to be here. Dr. Lidia Schapira: It is our pleasure. Ilana, I'd love to start the show by asking you if you can recommend to our listeners any recent story or book that has moved or inspired you. Dr. Ilana Hellmann: So, I read to escape, I don't read medical books, I don't watch medical programs. And I heard someone recently recommend, on one of your podcasts, a book by Anthony Doerr, called, All the Light We Cannot See, which I absolutely love - it's one of the most beautiful books I've read in the last two or three years. And I've just finished his next book which took him years to finish, it's a 600-page beautiful book called, Cloud Cuckoo Land, it has an interesting name. Have you read it? Dr. Lidia Schapira: I have not read that one. Dr. Ilana Hellmann: It's a wonderful book, and if you read the last one, it's no less inspiring with lots of different characters over different time periods, and they're all connected to each other by a story, by a fairytale, and it's a beautiful book. I enjoyed it tremendously. Dr. Lidia Schapira: Oh, thank you for that. I have a book for my next trip now. Dr. Ilana Hellmann: Wonderful. Dr. Lidia Schapira: Let's talk a little bit about writing in Medicine, and writing, as a way of sharing our stories with our colleagues and our trainees. What was the motivation for you to write this piece? It seemed to me, when I first read it, that it took years to put it together. But what was the driver for sending it out to the world? Dr. Ilana Hellmann: It's quite a strange story. In fact, what happened, happened a large number of years ago - the baby is 10 today. I wrote it just after she was born. It was a long, long time ago, when I saw the patient and I was overwhelmed by what happened, and I sat down and wrote something and put it in a folder on my computer, and forgot about it. What then happened, as you say, that it took years and years to finish, is that I got a call from the computer tech people in the hospital who said, "We're coming to give you a new computer, and if you don't clean up all these things on your desktop, they're going to get lost." And I found this folder that I'd forgotten about completely, and I read it and wasn't finished. You know, I hadn’t thought about it in all those years. The end part about what it had done to me over the years, and the things that have changed in my practice because of what happened came later. I think we, as doctors, not just oncologists, doctors in general - we see bunches of people during the day, and one goes out, the next one comes in, and another goes out. You know, you don't have time during the day to process what you're feeling, and you just have to get past it and go to the next patient. I find that occasionally, at the end of the day, I think, "Wow, I have to write this down." And the truth is that I've just about never shared anything of the things I've written. I work a lot with students, and we encourage students to write narratives, reflective diaries; you know, I thought, "Wow, it's kind of hypocritical of me to tell them what a wonderful thing it is to do and not share something like this with somebody else." And that's how it happened that I shared this particular piece. Dr. Lidia Schapira: So, before we go into what I think is the essence of the piece, tell us a little bit about what it's been like for you to share your writing with your students now. Have they had a chance to comment and react to this piece? Dr. Ilana Hellmann: My students haven't seen it yet. My colleagues, our residents, have all seen it, and it's been quite amazing. It's a side of us that we speak of less. There are things that are left behind closed doors, and it's been wonderful. I think people who've read it have then come to me privately and said, "Wow, that's an amazing story, and I'm so glad you shared it with me. And that's an amazing outlook, what you thought about it." So, it's been quite something. My students have been on holiday the last two months, we're just starting again with all of them, and I'll share it with them once it's published. Dr. Lidia Schapira: I think they'll appreciate it. But let's talk a little bit about this, and you just said there's so much that happens when we close the door. I don't want to trivialize the message in your essay and say that it's just about self-care, because I think it's about much more than that. So, let's talk a little bit about what it felt like to you to be on the receiving end of this gratitude. Patients often express that they are so grateful for what we've given them through our treatment, and, you know, an extension in life, or an improvement in symptoms, but it's rarer for us to really have and feel that compassion emanating from a patient, and it feels so good. Take us there. Tell us a little bit about what it felt like. Dr. Ilana Hellmann: Absolutely. I completely agree with your sentiment. As I wrote, I had no idea what was going to happen when he walks through the door. I expected something completely different. When he pulled out his cell phone and there were these pictures, it was just overwhelming. I couldn't stop the emotion; it was just amazing. And I knew that he'd come for me, literally. He'd come to say to me, "It's okay, I'm fine. I've gotten on with life, everything is good." I hadn't seen him in two years. He then disappeared, and I didn't see him again until he needed a letter for something, or other. And I've actually seen him again, I saw him two weeks ago because of this essay. And after that happened, I thought, "Wow." As you say, it's not just self-care, it's way deeper than that. And in a way, we are trained to look after our patients. The patient is the one with the disease. We need to think about what the patient is feeling, we need to make sure they don't have too many side effects and long-term stick to what we give them. And we are not trained to look after ourselves, or certainly, to ask our patients to consider what we feel, or whether what they're going through has any effect on us. But as I wrote, in the years since, I had a patient recently with lymphoma, and she was very, very unwell in the beginning, a young lady, she dreamed about going for a walk on the beach. And over the first few months that she was treated, she was very unwell and she could barely walk, and I said to her, you know, she kept saying to me, "I'm going to get to that beach. I'm going to get to that beach." And I said to her, "You know, when you get to that beach, it would be so wonderful if you could let me know." And when she got to the beach, she sent me a WhatsApp-- all she sent me was a picture of the waves rolling onto the beach. As you say, I was so grateful for her sharing that with me. And I think, and maybe this is the bottom line, that exposing that side of us to our patients makes us more human. You know, we're not just the people who hold their hand and give them their chemotherapy, and hopefully, help them get past whatever it is that they're ill with, but we are people. People like it. When I give patients my email or my phone number, I say to them, "You know, when you are not well, or whatever you need, let me know. But if you're feeling better, I'd love to hear that too." And I've never, ever had anybody dislike that. Most of them say, "That's wonderful. Absolutely, I'll let you know." And then, as I wrote, they take it very, very seriously, and it's such a wonderful thing. You know, in amongst the 20 emails of, "I've got terrible nausea, and I'm constipated, and another lump has appeared in my neck, I need a letter for some insurance," and so on, and so on, then to, "I just wanted to let you know that I'm really doing okay." Or, "Whatever you gave me, it feels better." And again, really, I think it just gives the patients a bit of a look into the human side of their physician. Dr. Lidia Schapira: And it definitely feels so healing I think for us. I was struck by your account when you talked about the fact that people walk in and out of your office, and you're constantly prepared for emergencies. Basically, our clinical time is often responding to all of the challenges and the problems that patients bring to us, because we deal with people who are so ill and it's very stressful, so, it almost seemed to me that you were surprised when what happened in that encounter was just meant to be a gift to you - an expression of gratitude, and that seems to have had a huge emotional impact. And as you were talking, I wondered, do you and your colleagues share these stories? The stories, the photos of your patient getting to the beach, and the messages of gratitude that often come months or years later? Dr. Ilana Hellmann: We do, we do. You know, as the years have gone by, technology has changed. There used to be that board in the doctor's room, where a patient would have written a letter, and would get pinned on the board - those days have gone. Today, patients, some of them write letters, and then people take a photograph, and we have a WhatsApp group, or an email-- I'm sure there was one like that, yesterday, from one of my other colleagues, who got a beautiful letter from a patient. Absolutely, absolutely. In the same way that when there's bad news about a patient that everybody knows, it's shared, when there are good things about when patients thank us, or if they're just better, you remember there was so and so who was really doing unwell. Well, you know, things are looking better. Definitely, definitely, we share, for sure. Dr. Lidia Schapira: So, how do you think this experience affected or changed your practice and how you treat in future patients? Dr. Ilana Hellmann: When I called Avi, the patient in the essay, and I hadn't spoken to him for many years-- he disappeared from follow-up, and it happens - young patient, he had better things to do than come and see his hematologist. When I called him, immediately, he recognized my voice when I said, "Hello", and he was very happy to hear from me. And when he heard why, and I sent him the piece, he was overwhelmed with the effect that it had on me. Immediately, we made a date, and he came in for an appointment, and we chatted about it. He had a lot to say about the essay. He was very, very stunned, in fact, by the accuracy, from his point of view, of how I had described him and his wife, and what they'd gone through, and what had happened, and he wanted to know if things have improved. You know, back when he was ill, it wasn't so easy to find a psychologist for him. It wasn't something that was-- now, we have two psychologists who work with us, and things are a lot better. But his biggest question to me was, he said, "You know, I never thought about your side. It never occurred to me that what was happening to me was affecting you." He said, "You know, are you counseled? Does somebody look after you?" That's a difficult question. It's not such a comfortable question. I don't what you would answer to that one. But certainly, not officially. There's definitely no special time to work through-- you know, things come up when we have meetings, but it's not as if I have sessions to say, "Oh, I had a bad day, and this is what happened, and so and so, and whatever," but I share more with my patients. They're sad, I say, "Yes. It makes me sad too." I used to think maybe it made me weaker, or it was unfair to the patient to show them my emotion, and I've learned that I think it's absolutely fine, to a certain limit, to show them that I'm human, and I'm with them, and that's okay. And as I say, I'd ask them specifically to share good things with me, and not just bad things. And it's something that I tell my residents and students, I say, "Even people who are unwell have good moments, and we need to encourage them, and also enjoy them ourselves." Dr. Lidia Schapira: I think we could talk for hours, and I sincerely hope that the listeners will talk with their colleagues - so, with somebody else about these same issues. I think it's a fabulous conversation. I'm not trying to evade answering your question of what I would've said, or what I would say; I had an almost transformative moment many years ago when I was a young oncologist, and a patient who was incredibly kind and tuned into me, who had metastatic cancer, saw my expression when I walked in the exam room, and she said, "You're having a bad day." And just that moment of empathic connection, when she recognized that I was under stress, I clearly showed it, was enormous for me. And I felt such deep compassion from her and was able to then turn this into a self-compassion moment, and then I sort of reset myself, and we had a good visit. But since then, I've been much more aware of the fact that our patients do also pick up some of these feelings. And when there's a good connection, their presence can be, and feel, very healing for us as well. And the answer to the question of, "Do we have psychologists? Do we need therapists?" I think is one that we as a collective group, or as a tribe, should often ask ourselves. What do we need? How do we vent? How do we unload? How do we share, and how do we get that social support that we need to do this difficult, stressful work, in the same way that we think about the mental health and well-being of our patients, as you so beautifully pointed out? So, I thank you very much. I think that as the Editor, and the readers who first looked at your essay, we were very moved by this sentiment that you have about the deep connection we feel, and how much we wish our patients well, and how grateful we are when they tell us that they are well. So, I wanted to give you an opportunity to finish the podcast with a thought or reflection. Dr. Ilana Hellmann: I think we don't reflect enough. Today, we teach students to think reflectively - "I saw something, it meant something to me. What does it do with me?" But it's not something I was taught, or it's certainly not the regular kind of discussion that happens, and that I think writing things down is so therapeutic - you think about something, you write it down, you read it again, you come back to it, as this happened to me, years later. It's a beautiful process. I would recommend to people to just try - when something happens, to just sit down with a piece of paper-- well, nobody sits with a piece of paper, in front of a computer and write it down. Dr. Lidia Schapira: Even if we don't have an IT person coming to give us an ultimatum, they're going to clear everything on our desktop by tomorrow. Dr. Ilana Hellmann: Right. Absolutely. Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories. And thank you, Ilana, for a wonderful show today. Dr. Ilana Hellmann: Thank you. Dr. Lidia Schapira: 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. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel.

Listen to ASCO's Journal of Clinical Oncology essay, "People Like Us," by Dr. Stephanie Graff. The essay is followed by an interview with Graff and host Dr. Lidia Schapira. Graff reflects on her life experience as a female physician, farmer’s daughter, mother, and pie connoisseur to connect and help her patients get through a life-altering diagnosis. TRANSCRIPT Narrator: People Like Us, by Stephanie Graff, MD (10.1200/JCO.22.01835)   I was standing in the dining room on the 15-year-old burnt sienna carpet, so heinous that it could have only been chosen because it was on sale. I remember the afternoon light from the western windows falling across the oak dining table which matched my mother’s brusque, wooden tone. She remembers nothing. She does not remember saying the words that I have so often replayed, pondered. I was stung by the interaction in a way that rendered me speechless, in a way I now recognize too often in my approach to conflict in adulthood: silence assumed to represent understanding, consent, or complicity.   Weeks earlier, this same woman drove all over our small town hoping to catch the mailman before driving to my track and field meet 30 miles away. I was waiting for word from the University of Missouri-Kansas City (UMKC) School of Medicine, and I think my mom was as anxious to hear as I was. Conveniently, her brother (my uncle) was our mailman. When she arrived at the track meet, she handed me the large envelope proudly bearing the school’s logo in the return address. I tore it open sitting with my boyfriend on the bleachers, seeing my prayers answered in black and white before my eyes. There is a photograph of this moment, so I can describe perfectly what I am wearing: my royal blue and white track uniform, my sprinters spikes and—I am sorry to tell you—a neon green hair scrunchy. This photograph also proves, in that instant, my mother understood that what was unfolding was a milestone moment in my life. I remember asking her later when I discovered she tracked the mailman around town to get the mail what she would have done if I had not been accepted. She replied that she knew I had gotten in from the size of the envelope, so she never had to think about it. I like to imagine my mom also had faith in me that led to the wild goose chase for the mailman, even before she saw the envelope.   Within the envelope, in addition to the acceptance letter and glossy brochure telling me all about my wonderful new life as a UMKC medical student, was a parental consent form. The 6-year combined BA/MD program at UMKC was far from inexpensive, and, as a minor, I would need my parents to sign this letter stating that they agreed that we would pay the tuition. Of course, by we what was really meant was I would be taking out student loans to cover every single cent of tuition, room, and board. But the letter, with a DUE BY date ticking ever closer, had been sitting on our dining room table since the day the acceptance arrived, unsigned. My father signed things like this. Never my mother. My mother would not even broach the subject with him. Nice families in rural Missouri just do not talk about money or politics. So, there it sat, a white paper elephant in the room.   “Mom, when is dad going to sign my acceptance letter? The deadline is soon, and we still have to mail it back,” I pleaded with her that afternoon. She turned to look at me, en route from the dining room to the kitchen and said, “Stephanie, people like us don’t go to medical school.” People like us? Who is this us? Women? Mid-Missouri farmers? People from small towns? Our family specifically? Poor people? I may forever regret not asking. I may forever regret that moment of stunned silence where I only wondered if she had just said no to my dream and considered my next move very carefully so as to not make it worse or potentially close a door forever. By the time I asked her, years later, what she meant in that moment, my mother had no memory of saying it to me. This innocuous phrase, “people like us” that haunted me for most of medical school.   Eventually, of course, my father signed it. Only a day or two before the deadline as my memory recalls. He sat me down and told me it was a lot of money and asked me if I was serious about this whole doctor thing. I assured him that the one and only thing I had ever wanted to be had not changed in 10 years, after a short-lived dream of being a country western singer and that it was unlikely to change now. Then, he had signed the consent, which I had taken immediately to the post office before anyone could change their mind.   Yet, those words kept bubbling up. When I struggled with a test or subject, I wondered if people like us always had a hard time with organic chemistry or neuroanatomy. When my classmates talked about their exotic travels to tropical getaways or international hotspots, I sheepishly admitted people like us do not travel much. When patients assumed the female medical student was a nursing student rather than a medical student, I assumed that was just what happens to people like us. When I mispronounced something or exposed my total ignorance into the broader process of step examinations, residency, the road to physicianhood, I figured it was just the sort of thing people like us cannot help.   Then one day, a patient newly diagnosed with melanoma shared with me that he was worried about how treatment would interfere with farming. “Well, what kind of farming are we talking about?” I probed. He raised cattle, had some corn and hay fields. “Oh really? What breed? How many head?” We fell into the easy talk of farm life, and he shared his current toils of repairing his tractor. When he left, his wife pulled me aside and confided, “It really is nice to know that his doctor is one of them.” When I start to write a prescription, I often stop to think about the cost, about how $20 US dollars is a big deal to people like us, and I talk to patients about what is financially possible, what help they need, what resources we have. One of my breast cancer survivors always framed her chronic lymphedema symptoms in terms of how much or how little it held her back from baking pies. We shared recipes of her grand champion state fair pies and my mom’s own grand champion pecan pie. I could understand the flurry of activity and pressure to bring your freshest, most beautiful pies to the fair because I shared that lived experience. Patients like this, one by one, started me thinking that maybe more people like us should be in medical school. I know the statistics for my own field of medical oncology, and few oncologists practice in rural areas, despite the community needs. I have no statistics for how many of my colleagues grew up farming or preparing for state fairs every summer. But, I have answered phone calls from my mom, asking advice about what aspects of farming are safe when you are neutropenic or how best to plan Moh’s surgery around harvest. People like us are necessary to fill those gaps.   As a woman in medicine, numerous women have reached out to me to ask me questions about the duality of medicine and mothering or the intersection of work and sex. My emails, text messages, and social media feeds are filled with threads on breastfeeding at work, daycare solutions, unique challenges in leadership for women, and advice on career growth. These conversations ring with the chorus of someone like me as we connect over similarities. My mom recognizes this version of like me as well, handing out my phone number to women in the intervening years from my hometown applying to my alma mater or medicine in general. If community and connection with other women improves career experience for women in oncology, I am glad there are people like us.   And as much as I see a need in medicine for people like me, I also see all the ways I represent privilege—which of course means that there is ample space in medicine for people not like me. If the numbers of rural or female oncologists are low, the numbers of Hispanic/Latino, Black/ African American oncologists are startling. How can we collectively provide culturally and linguistically competent care if our workforce does not share the same diversity as our patients?   So, mom, 25 years later, I think we have both grown to understand medical schools need people like us, people like all of us. I think you have felt that as much as I have over the years in your own connections with doctors caring for members of our family or in the health questions you save for me. When I sit with a patient as their doctor, I am also there as a woman, farmer’s daughter, mother, writer, baker of pies, and so much more. Each time one of these versions of me creates connection with a patient or colleague, my care improves. Each of our unique gifts and experiences help us connect with our patients in ways both big and small. Medicine needs people like us.   Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org.   I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we are joined by Dr. Stephanie Graff, Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University. In this episode, we will be discussing her Art of Oncology article, 'People Like Us.'   Our guest's disclosures will be linked in the transcript.   Stephanie, welcome to our podcast and thank you for joining us.   Dr. Stephanie Graff: Thanks so much for having me.   Dr. Lidia Schapira: It is our pleasure. So, I like to start the show by asking our authors what they are currently reading and would recommend to listeners.   Dr. Stephanie Graff: I am currently reading The Power Broker, which is kind of a funny book to be reading. It's obviously an older book, and it's the story of Robert Moses who famously, or infamously, perhaps, built New York City, and sort of wrote the power structure of city government or state government and politics in New York, and it's written by Caro and is a Pulitzer Prize winner, and I just have never read it. It's quite the tome, so it's hard to power through, but it's excellently well-written, and really insightful into political culture and the history of New York. So, I'm finally working my way through it. I'm not sure that I would recommend it for the average reader. I just finished The Sentence, by Louise Erdrich, and, Unlikely Animals, by Hartnett, and both were delightful reads.   Dr. Lidia Schapira: You are a gifted storyteller. I wonder if you could tell our listeners and share with us a little bit about your process and when you write, how you write, and what inspires you to write.   Dr. Stephanie Graff: When I write and how I write, I think the answer is, all the time. You and I may have talked about this before. I feel like writing is often how I decompress, and I find that I'm often writing in my head all the time. So, when I'm walking my dog, when I'm driving my car, when I have downtime, I'm sometimes turning over ideas or events and looking for the thread or the storyline there. I write poetry, actually mostly for myself as my form of journaling, or meditation, or rage, or sadness, whatever it is I might be feeling. And sometimes that then turns into something narrative, and that's a habit that I've had for a very long time, even as early as middle school and high school, it was a habit that I've always had. In terms of then turning that into something narrative or publishable, I think that that's more of an ‘aha’ moment where an idea that I've been turning over for a while finally feels like there's a unifying theme, or thread, or a particular patient encounter, or a funny thing that one of my children said inspires it to become this sort of 360 moment that makes it feel more like thematic story that can be told.   Dr. Lidia Schapira: So, given your expertise with stories, and your appreciation of literature, and the fact that you've now lived in the world of Oncology for quite a while, what is your opinion of the role of stories and narratives in our culture and our approach to training others, and sort of sustaining that sense of vocation I think that drove us all to choose a specialty in the first place.   Dr. Stephanie Graff: Yeah. I think that story is so important for how we relate to one another, and how we relate to our patients because I think that, you know, if we're just talking to patients about a phase III randomized clinical trial and throwing at a patient a bunch of statistics, or metrics, or guidelines, it's not digestible, or understandable, or relatable. And so, being able to talk about what we do at the story is what makes that understandable, memorable, digestible for patients, but also for our colleagues, and our students, and residents, and fellows, staff, everyone that we interact with in our day-to-day experience. And so, I think that really thinking about The Art of Oncology, the practice of what we do day-to-day as parables, and stories, and looking for ways to turn that science, that data into little anecdotes is really so central to understanding.   Dr. Lidia Schapira: Let's talk about the story that you so beautifully wrote, ‘People Like Us’. Thank you for sharing that and sending it out to the world. I assume this is something that you've been thinking about for decades, and I, since you don't look like a teenager waiting for mom and dad's approval to go to med school. You know a good story, Stephanie, I'm sure you agree, allows the reader to project into, and imagine things. And there were two big themes for me, and one of them had to do with the mother-daughter relationship. So, can you talk a little bit and share with us a little bit about that aspect of the story of the words that your mother said at a very tender age that sort of stuck with you and kept on giving?   Dr. Stephanie Graff: So, for those listening, the story is that my mom said to me after I had been accepted to medical school and was kind of waiting for my parents to sign the acceptance letter, I went to the University of Missouri, Kansas City six-year program, so I got accepted to medical school, straight out of high school. And because I was 17, they had to sign this parental consent in order for me to actually start. And so, this letter was like sitting like the elephant in the room on my dining room table for, I don't know, two weeks or something, waiting for them to sign it. And my mom one day, in a moment, that to her was, I mean, she doesn't remember it.   So, like to her clearly, it was like this nothing-passing comment, like, you know, "Pick up your shoes." She said “People like us don't go to medical school.”   And at the time, I was so struck by it, but I have no idea who this "us" was that she was referencing. And I have spent decades wondering, in retrospect, "Oh, why didn't I ask questions?" You know, my mom actually was this amazing hero to me in my childhood. You know, she was a Girl Scout leader, and I got my Girl Scout Gold Award, she created all these opportunities for leadership and engagement in my community. She taught Sunday school. She graduated high school but just has a high school degree. She never went to college herself, because she was actually told by her parents that girls don't go to college, that girls get married and stay home. And so, though she wanted to go to college, her parents closed that door for her, and so she worked a factory job to earn extra money to help support the things that my siblings and I all wanted to do that, you know, kids' activities get pricey. Eventually, the factory job was physically demanding on her as she aged, and she ended up applying to become a paraprofessional in the schools, and so spent the second half of my childhood working as a para in our schools, which actually also ended up being a very physically demanding job. But really all kind of just out of determination and passion to create opportunities for us as children. So, in no way is this story meant to be a shot at my mom. She's been a really, really great mom. And again, she has no memory of saying this thing to me that has stuck with me so harshly, perhaps over the last several decades. But she said it, and at the time I was kind of like, "What does she mean by this?" I mean, obviously, I already had a lot of doubt about whether or not medical school was going to be right for me or if I was gonna fit in there, and for her to say that, I was kind of like, "Oh gosh, maybe people like me don't go to medical school." And then as I entered medical school, medical school was hard. It was hard as an 18-year-old. I struggled in classes, there were lots of moments where my peers were just more worldly than me. They had traveled, they came from backgrounds where most of their parents-- I had so many classmates whose parents were both physicians, and so they didn't struggle with the language of Medicine, the career paths of Medicine in the same way that I did. You know, my mom's words just kept coming back - people like us don't go to medical school. It was something that just sort of kept coming up over my career.   Dr. Lidia Schapira: So, who are those "People Like Us"? Have you figured it out? I certainly enjoyed reading all of the possible spins of People Like Us - people who come from farm backgrounds, people who aren't rich and worldly, perhaps women. Who are these "People Like Us?"   Dr. Stephanie Graff: Well, at the end of the day, I think all of us are People Like Us because you know, if anything I've learned in my last 20 years of this, is that everybody has those feelings of self-doubt, and feelings like, "we don't fit in." And hopefully, those are coupled with moments of feeling like you do belong, and hopefully, everybody has a network of belonging. But we're all periodically thrust into times where we don't feel like we fit in, and we don't feel like we belong. And there's so much that can be drawn from those moments. So, whether it's that you are from an underrepresented group, from your ethnic or cultural background, your socioeconomic background, your gender, your sexual identity, you know, no matter what that is, your parents' occupation, if you're the first person in your family to go to college, you are going to bring the tapestry to Medicine that helps us kind of richly relate to our patients in a way that's so cool. One of my favorite studies that I've seen in the scientific literature is actually not an Oncology study, it's a Cardiology study that looked at patients presenting to emergency departments with heart attacks, and it was a gender inclusion study. And what it looked at is in patients that have heart attacks in the emergency department, if the cardiologist caring for the patient is matched gender, like a man caring for a male heart attack patient, they have a better outcome. But if that cardiologist has a partner that is of the same gender, so like if the male cardiologist has female partners, their care of female heart attack patients improves, and that patient's cardiac mortality improves, which was so fascinating that like just having a greater exposure to female cardiologists helped male cardiologists provide better care to female patients. So, I do think that just gathering experiences of the people not like me, that surround me all day, help me relate better to my patients. There's certainly so many cultural celebrations, travel experiences, world celebrations, that I better understand through my classmates, peers, colleagues, friends, that I have encountered in Medicine, that help me connect and relate to my patients in ways that I previously didn't have access to. And there's ways that I'm sure me as a Midwestern farmer's daughter have helped my colleagues understand some of the things that our patients cope with.   Dr. Lidia Schapira: You make a brilliant case for diversity, and of course, for inclusion, which is something that everybody is really keenly trying to think more deeply about these days. And that brings me to another question or follow-up, and that is the role of empathy in communicating with people who are not like you. One of the most beautiful parts of your essay, I thought, was when you take us into the exam room with a patient, and you're actually giving us some examples of how your lived experiences as a farmer's daughter allowed you to connect with people who work the land, or who depend on the land or women who bake pies. Tell us a little bit about that - the role of the connection with a patient, and empathy, and compassion in helping us create a more welcoming environment, both for our colleagues and for our patients.   Dr. Stephanie Graff: I think everybody has had that experience before where a patient asks us, as their Oncologist, if while they're undergoing chemotherapy, undergoing radiation, if they're still going to be able to like [insert their passion here]. You know, as I reflect over my lifetime of patients, I've had patients who are professional poker players. I had a professional accordion player. I've had figure skaters. I've had everything, right? And I don't know the first thing about professional poker, okay, I would be a terrible professional poker player. But I could imagine what skills are needed to be a professional poker player and answer that question. But every once in a while, a patient asks me if they're still going to be able to do X, and whatever they fill in that blank is something that so deeply relates to my childhood experiences, that it becomes this bonding moment with my patient. So, some of the ones that I shared in the essay is a patient who spent every summer baking pies for the State Fair. For those of you who don't know, at the State Fair, you can enter your pies, cookies, baked goods, canned goods, decorated cakes, pretty much anything you can imagine, breads, and they're judged, and the winner gets ribbons - red, white and blue, and grand champion, and reserve grand champion that come with cash prizes, it's bragging rights. If you happen to also own like a bakery, or decorate wedding cakes, for example, that's something that's then marketing material, advertising material for your company that you're the Missouri Grand Champion of wedding cake decorating for 2022, or whatever it might be. So, this is a big deal, and people in my community talked about it and joked about it. And you would, at the church picnic when you're picking which pie, you know whose pie was the grand champion pie. So, she told me going into her chemotherapy, that it was really important to her that she could do the pies. We laughed, because my mom is the grand champion pecan pie baker for our county, and my mom makes a, pardon me, damn good pecan pie, I would say.  So, that patient and I spent a lot of time talking about how her pie baking was going. And I will say that the summer that she was on chemotherapy, she said that it was really fatiguing and hard for her. And so, that next year when it came time to pie season, she was really excited to tell me that like she entered two more pies than she had the prior year because she had that extra energy to like get up on the morning of the fair, and bake the extra pies, and spending all the extra time on making the crust beautiful. And I know what that's like because I've seen my mom get up at four o'clock in the morning to make a beautiful, perfect pie, and have it ready to enter at 8:00 AM when the fairgrounds open. That's so unique to perhaps rural Missouri, or the Midwest, or fair culture, and I guess probably not a lot of Medical Oncologists know what that's like. I had another patient who was, when I was still early in my career and was caring for things other than just breast cancer, who had a melanoma, and his wife asked me a lot of questions about how it was going to impact his farming. And we had this really lovely conversation about what kind of farming, and how many acres he had, and how many head of cattle, and what crops, and they were shocked at the depth of my knowledge about farming, and my ability to answer their questions in detail about what would be safe, and what would not be safe. And when they found out that it's because that's what I was raised doing, and that's what I did when I went home on weekends to visit my family, it was help out on the farm and do many of the same things that we were talking about. They saw me in this completely different light. Then they had seen me as this high-heeled wearing, white coat dawning Medical Oncologist, and it, I think helped them feel so much more comfortable in their cancer treatment, knowing that I understood where they were coming from.   Dr. Lidia Schapira: I have to ask you this question. Have you shared the essay with your mom?   Dr. Stephanie Graff: I have not shared it with her yet. I will when it comes out in print.   Dr. Lidia Schapira: What do you think her reaction will be?   Dr. Stephanie Graff: I think that she'll think it's lovely. We've had this conversation about how annoyed I am that she doesn't remember saying it, and how -- I guess it's weird because, you know, she said it and at times in my life I would say that it was hurtful that she said that people like us don't go to medical school, and that probably is the right language at different time points. I don't know that today I would describe it as a hurtful comment because I know what it was. It was just words that came out of her mouth whilst she was busy doing 100 other things, right? She doesn't remember it for a reason, which is that it wasn't a big commentary on me, or my life, or my choices. It was just words coming out of her mouth as she was going from one thing to another. So, I don't think that she'll find any hurt, or ill will in it at all.   Dr. Lidia Schapira: She may respond with a comment about what it's going to be like for you when you're in that situation with perhaps your children, and perhaps, at that point, make a comment that to you, may be forgettable, but makes a deep impression and a lasting impression in their young minds.   Dr. Stephanie Graff: That's actually something that I've spent a lot of time thinking about, both as I reflect on the comment, and, you know, at the very beginning of this, we talked about when I'm writing, and I said, always. I think about that comment a lot in the context of so much that I do - in my own parenting with my children, things that I say to them, and how those words might impact them. Things my husband says to them, and how those comments might affect them. But also, in the larger work of DEI, and how "jokes", or jabs, or sarcasm, things that aren't necessarily meant as true, can cut wrong. And that's why we have to be thoughtful, and careful because you never know who is listening, and how words are going to hit somebody on any given day.   Dr. Lidia Schapira: On that beautiful note, I want to thank you for sending us your work. Please continue to write, and I look forward to reading future stories, maybe even a poem, sometime. Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating, or review wherever you listen. Be sure to subscribe so you never miss an episode.   JCO’s Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement.   Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review.   Bio: Dr. Stephanie Graff is the Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University.

Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer.   TRANSCRIPT  Narrator: Preparing for the End Game, by William T. Beck, PhD (10.1200/JCO.22.01758) Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case. Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay.   Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well. My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed. One frequently hears about people who have survived near-death experiences or those who have been diagnosed with a terminal illness, having an epiphany and wanting to live each day to the fullest extent possible. One also hears about realists who exhort us to live every day as if it were our last. Certainly sound advice. But do we normals really adhere to these dictums? Many people probably do, but my experience, both personal and from talking with friends, is that most of us still go about our lives doing the quotidian things that we have always done. There is always tomorrow, but Jordan's illness has caused me to rethink that. Indeed, it has become increasingly clear to me, finally, that I should not put off doing things for another tomorrow, a tomorrow that is not guaranteed. Despite knowing—in the abstract—that much more of my life is behind me than in front, my good health and full days have led me to think that this can go on for some time, with the inevitability of death still relatively far in the future. Jordan's situation, however, has changed that perception and has got me thinking about how I would like to spend my remaining days, hopefully many, and thinking about how to really prepare for this end game, taking these final laps. Paul Kalanithi, a young surgeon, wrote so tenderly in When Breath Becomes Air2 about his struggles while suffering the ravages of lung cancer and his hopes for his wife and young children. Even at my advanced age, I too have similar hopes for my wife, children, and grandchildren. And Christopher Hitchens chronicled, in Mortality,3 his last year with esophageal cancer as fiercely as he had always done in his critical atheist's view of the world. But it was not until Jordan's sickness and death that I have taken Hitchens's clear view of life's limitations to heart. In his book, Being Mortal,4 Atul Gawande, the physician-writer, has chronicled both the advances and limitations that modern medicine has brought us as we face the end, including the complications that limit our autonomy in this passage. Gawande notes that as we age and become infirm, either as a normal process or because of disease, we become more dependent on medical and social networks that may, unfortunately, effect on our independence. Gawande suggests that a good death may be difficult to achieve but a good life less so. I saw this good life in Jordan's terminal illness. Indeed, another physician-writer, Oliver Sacks, emphasized in a short collection of four essays entitled Gratitude,5 the utility of a good and fulfilling life in helping us cope as we approach the end. Near the end of his life, as his body was being consumed by cancer, Sacks continued to do what he always did, for as long as he could: His days were always full, and he wrote beautifully of his clinical and social observations. Importantly, Sacks expressed enormous gratitude for his life as a sentient and thinking person, who loved and was loved, and whose life was consequential. What more can one want? My friend Jordan was such an individual: sentient, smart, and funny; a man who lived a consequential and impactful life, who loved and was loved. His illness, however, was not one of going softly into the good night, as was depicted in the movie Love Story.6 Toward the end, my friend suffered with pain, balance problems, fractures from falls, shortness of breath, insomnia, and the like. But through it all, he presented, at least to me, an admirable grace and equanimity that gave us all hope that despite his suffering, there would be one more day, one more week, one more month. My wife and I went out to northern California last winter to visit Jordan and his wife, and although unsaid, to say good-bye. But now, more than a half year later, he died, just days short of their 50th wedding anniversary. We have stayed in close contact with Jordan's wife since his death. The funeral was private, but my wife and I attended a subsequent memorial service for Jordan at which family, friends, and colleagues remembered him and his consequential life and bid him a proper farewell. So, here we are. My good friend is gone, and his struggles have been hard to watch, even from a distance, but he has helped me see more clearly that this all does come to an end at some point. So how do I want to pursue this end game? Certainly, I want to stay engaged in my science-related activities. But I also want to use what time I have left while I am healthy to spend as much time as I can with my wife and family, to be with good friends as much as they will tolerate me, to continue to read, to go to theater and concerts, to travel, finding humor in life, and enjoying good wines and food—all the typical things that people do and say they want to do as they approach the end game. Indeed, I want to do as many of these things as possible, but with a renewed sense of wonderment and gratitude, gratitude in the way Oliver Sacks expressed it. My friend, Jordan, the academic, still has some lessons to offer, so I will try to follow his example to live as good a life as possible, and if I become infirm, I will try to remember how he approached the end: with grace, courage, and equanimity and reflect on all the good things I have had in this life, with a great sense of gratitude. Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. William Beck, a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago. In this episode, we will be discussing his Art of Oncology article, 'Preparing for the End Game.' At the time of this recording, our guest has no disclosures. Bill, welcome to our podcast. Thank you for joining us. Dr. William Beck: Thank you, Lidia. I appreciate the opportunity. I think this is a unique and valuable feature of JCO, and I hope I can do it justice. Dr. Lidia Schapira: It's terrific to have you. Tell our listeners a little bit about the motivation for writing about Jordan, and the effect that his illness and passing had on you. Dr. William Beck: Yes. Well, his illness and death made me think of my own mortality, and how if it were me, would I want to spend whatever remaining days I have, hopefully, many. But hopefully, in a way that would allow me to honor his life, and also do justice to my own situation. So, that was the nexus of the issue. I spoke to a writer friend, Eric Lax, he's written a number of books; one is, The Mold in Dr. Florey's Coat. If you haven't read it, I highly recommend it. It's about commercialization issues during World War II, and he's written some other books as well, a book with the hematologist Robert Peter Gale on radiation. And I asked him what he thought about this, and he was very positive. As you, I'm not accustomed to opening myself up in the scientific literature. I write scientific papers, and they're not emotional. One might get emotional about the reviewer's comments, but that's another story. And so, this was a difficult thing for me to write, but I felt if done correctly, it might be useful not only to help me articulate my own feelings, but it might be useful for others, especially oncologists with whom I've been around in my entire professional life, and who deal with these matters daily, as you do. But most likely, and of necessity, keep their thoughts and their own mortality locked away. And I sort of thought that this might be a way to help others think about ‘Preparing for the End Game’. Dr. Lidia Schapira: You bring up some interesting points because in order to write a piece that will resonate with others, you have to allow yourself to be vulnerable, and that is not something that we are taught to do in our academic and professional lives. Was that hard for you? Dr. William Beck: Very, yes. Dr. Lidia Schapira: And how did you work through that period of deciding to make yourself vulnerable and then share that with colleagues whom you may never know or meet? Dr. William Beck: Thank you for that question. I wanted to write somewhat of an homage for my friend, Jordan, and that made it a little easier to open myself up. And I might add, I shared this, after it was accepted, with Jordan's family - his wife, who is a friend, and his two adult children. And they all very, very much appreciated what I had done. So, I felt I was on the right path with that. So, it was in part for an homage to Jordan, and I had walked with him and his wife during his illness, and then with his death, and I wanted to mark the event in a way that I felt more than just giving money to a memorial fund. I felt I wanted to make it very personal, he was a good. I don't know if that answers your question, but that's why I started it. Dr. Lidia Schapira: In thinking about your essay and the way you chose to honor your friend and his memory, what do you think is the message for some of our young readers? Dr. William Beck: That's a good question. I put myself in the 40-year-old Bill Beck mindset, and back in those days, as I said in my essay, you know, everyone has to die, but in my case, I thought an exception would be made. Jordan's death, and those of others around my age have led me to understand that an exception will not be made, and I want to make the best of it, and if our young readers who know that this is an abstract that's very far away, but it becomes more and more of a reality as you approach the end, and I'm guessing that our younger readers who are oncologists can wall that off with difficulty, but can wall it off to a certain extent. But it's there. It's inescapable, and so, maybe preparing early, if it even makes you think about enjoying a little bit more time with your kids, enjoying a vacation for another day, or even putting a little bit more money away for your IRA for your retirement, that could be very useful for them. Dr. Lidia Schapira: On the flip side of that, Bill, you write in your essay that you have continued to remain involved in your science, and I imagine that's because you love your science. So, tell us a little bit more about how you're thinking now, as you are mature-- I won't use the word senior, or old, about continuing to remain involved in a career that is not just work, but something that you love. Dr. William Beck: I could not imagine retiring. What I enjoy about my retirement is that I basically do everything that I did before, except the administrative part - the running a department for so long. And I do it on my schedule, not somebody else's schedule, and that is liberating. I just came back from a two-hour lecture that I gave yesterday; I mentor young people, I review grant applications and manuscripts, I read the literature. So, I stay involved. I can't imagine not being involved. And as Oliver Sacks, whom I've cited in the essay, he went at it all the ways best he could all the way to the end, and I hope that I will have that opportunity to do so as well. Dr. Lidia Schapira: What advice would you have for some of our listeners who are themselves accompanying a friend who is ill, or perhaps a relative who is facing a chronic or terminal illness? Dr. William Beck: I'm loath to give advice, but I would suggest that they might want to be there as much as their friend wants them to be there for them. To be there, and for them to know that they're there. I was in a unique position because I knew a little bit about the cancer field, and I could help Jordan and his wife navigate the shoals of interacting with physicians, and understanding their drugs, and getting second opinions, actually, for them. So, I was in a fairly unique position, but I think that the key thing is to be there to the extent that the individual wants you to be there with them is important. That's what I've learned from my deep emotional involvement with Jordan, but with others as well. Dr. Lidia Schapira: As you know from reading the essays we've published in Art of Oncology, Grief is a common theme, and I ask many of our authors to recommend, perhaps, some books they've read, or works of art that have helped them in processing their own grief. So, let me ask you if you can recommend any books, or poems to our listeners. Dr. William Beck: I'm not much into poetry, but I did happen to see an amazing interpretation of Psalm 23 on the Jewish Broadcasting Network recently that was eye-opening to me as a non-religious person. That was very interesting. In terms of books, I think a good start is the beautiful essays of Gratitude by Oliver Sacks. I've started to peel into, and peer into a book on Morality, by Jonathan Sacks-- no relation, I don't think. He was the Chief Rabbi of the UK. And in terms of art, I can think of music - the ‘Pastoral’, by Beethoven, and the ‘9th’, by Beethoven, are the ones that just are so uplifting to me, that I think would be very important to calm one's soul. Also, if I might add, The Stones are pretty good too, for that. Dr. Lidia Schapira: So, let me conclude our interview by asking you a little bit more about the role of storytelling, and essays, and narrative, in helping us come together as a community of professionals who are actually dedicated to looking after patients who are seriously ill. How have you used stories in your approach to Medicine and Academia, and what do you see as the role of these narratives in the future education of oncologists and hematologists? Dr. William Beck: So, I think young people, especially, need to hear stories of how these things begin. They need to hear origin stories, and middle stories, and end stories. Joseph Campbell, is one who's delved into where we came from, and about storytelling, as being very important in development of societies and traditions. So, I've tried in my work, even though it's scientific work, and maybe some of my reviewer critics would say, "Well, it's all stories and fables," but I've tried to develop several lines of science storytelling for our colleagues. And I think in general, whether it's in science or this kind of essay, yes, it's very important that the young people get outside of the, "What do I need to know for the exam?" mentality, to look at the bigger picture; and I'm afraid that's getting lost in modern education. The guy who introduces me, when I give the general lecture to all the students who are first time, first day in the room, never to be in the room again, always says, "And Dr. Beck won't answer any questions about what's on the exam." Dr. Lidia Schapira: Well, I thank you for sharing some of your humanity with the readers of JCO, through the essay. I know, as you told us, during the review, that you're not used to writing these kinds of essays, and you're much more comfortable with scientific work. But I think we need to show the human side of our scientists. I think that Jordan's family is right in thanking you for the tribute you paid to him through this essay, and I'm very glad that you did write it, and decided to share it with us. Dr. William Beck: Thank you. Well, I'm really glad that you have this venue, and I'm honored to have my essay published in it. I thank you, and your colleagues. Dr. Lidia Schapira: Thank you, Bill. Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, wherever you listen. Be sure to subscribe, so you never miss an episode. JCO’s Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at: podcasts.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy, should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review.   Bio: Dr. William Beck is a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago.

Listen to ASCO’s Journal of Clinical Oncology essay, “Being on The Other Side; An Oncologist’s Perspective on Grieving,” by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined. TRANSCRIPT Narrator: Being on the Other Side: An Oncologist’s Perspective on Grieving, by Shannon MacDonald, MD (10.1200/JCO.22.01363) As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept. Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study. It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us. In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night. Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes. Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life. Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me “are you sitting down?” So, I kneeled on my yoga mat. I can’t recall how many synonyms for death he attempted before he was forced to say the word “dead” to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said “Dan is dead” and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own. I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan’s place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, “Shannon, you cried softly and sighed all day long.” When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep. After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, “I feel so guilty too.” For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death. With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as “moving on” and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned. Eventually, I reached that place that Didion described: “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say “I” instead of “we.” I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him. Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan’s return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a coworker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional. I learned to answer the “how are you” question by replying okay, as I could not lie and say “well.” When my nephew died, I texted my sister daily “How are you on a scale of 1- 10?” She loved this. People said perhaps well intended but strange things, such as “don’t worry. You are young and will marry again.” and “you are lucky you did not have children and you will be a mother to somebody else’s children.” With these comments I heard, “Dan is replaceable” and “it is good thing that you don’t have a piece of him in a child you shared.” I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself. Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows including this one at podcast.asco.org. I'm your host, Dr. Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. Shannon McDonald who's an associate professor at Harvard Medical School and a radiation oncologist at the Massachusetts General Hospital, and Mass General Brigham in Boston. In this episode, we will be discussing her Art of Oncology article; “Being On The Other Side: An Oncologist Perspective On Grieving”. At the time of this recording, our guest has no disclosures. Shannon, welcome to our podcast and thank you for joining us. Dr. Shannon MacDonald: Lidia, thank you so much for having me. It's a pleasure and privilege to be here today. Dr. Lidia Schapira: I'd love to start by having you tell us a little bit about what motivated you to write this essay that is so personal and so important, and to share it with the large community of oncologists. Dr. Shannon MacDonald: So, writing it was easy. I found it very cathartic to write about my experience. So, the act of writing it, I did over many years. I started it soon after Dan died, picked it up a couple of years later, and then put it away for a long time, and recently was motivated to pick it up and start writing again based on reading “Beautiful Boy”, which was one of the Art of Oncology pieces and also, based on another medical narrative that I wrote just before this one. And the decision to publish it and make it public was a little more challenging. Dan was a very private person. We spent many years being very private about his medical problems. He never wanted to be seen as having a disability or a medical issue. I think he was wise enough to know he'd be perceived differently, but I made a decision when I gave his eulogy to share some of his medical history and how brave I think he was during that time. And I think one of the reasons to publish it was to help others. I found reading very helpful when I went through this experience and I think helpful in my career as an oncologist, and reading people's stories, short stories, books, any type of reading about the human experience is helpful to try sort of put yourself in those shoes and try to understand what it feels like. And I was also motivated by giving a few talks or joining others to give talks on grief during the pandemic and speaking about my experience and was told by colleagues a long time ago,’ we just want to know how it feels’. And when I gave these talks, I think residents in particular, but also, colleagues of any age were very grateful for the sharing of my experience. And it made me feel sharing this was meaningful. Dr. Lidia Schapira: And when you talk about how it feels, the sentiment I took away from reading the essay, and I've read it many times, is how raw that felt. And your wisdom in saying that you had lived as a professional in a culture that's immersed in grief, and you were exposed to suffering, and the suffering of children even, every day in your professional life, and yet you were unprepared. Can you talk a little bit about what you felt helped you to learn to accept and move on or live with Dan's absence? Dr. Shannon MacDonald: Yeah, so I think what you said about being totally unprepared and what I said in my essay was completely true. I guess, I thought somehow that seeing patients suffer, seeing them lose loved ones, seeing parents lose children would have somehow made me more prepared, but it did not at all, I was completely caught off-guard. And I remember calling a colleague who was also 40 and she lost her husband suddenly, about three months after I lost Dan. And one of the first things she cried out when I called her is, “I can't believe I had no idea what this felt like.” And I think that that resonated with me, I felt exactly the same way, and that's what I answered back to her. And as much as we live it and see it every day, it's so different being on the other side of it. I think we see the illness, the sadness, and you think of it for moments. You can't think of it every moment of every day. And I remember hearing people say that person that I lost is in my mind every moment of every day, and I couldn't understand that, but it's true. Somehow, it's constantly there. Even though Dan was gone, he was constantly there, and to do anything meant sort of pushing him out of my mind in order to do another task. And that part is the part that I think is unimaginable. And why would you want to imagine that, and how could anyone? And that is the part that we don't see. And I think as oncologists, we see our patients through a tremendous amount of suffering. We see them at the time of death of a loved one, and then we see them shortly after, but we don't always see them in the weeks, months, years after that loss. So, it was that part that was so unknown to me until that happened. And I think you do what you can to get through it. It's not easy, it's messy, and it's hard. And I can't say that I could give someone advice on how to get through it in a better way. I think you just have to go through it. And that was yeah, the experience I learned from my loss. Dr. Lidia Schapira: So, you say that it's messy and complicated, and in your essay, you reflect also on the reaction that you had or the way that your colleagues responded to this catastrophe that took you by surprise. It was not as if Dan had a chronic illness and was approaching the end, this was totally unexpected despite the fact that he did have an illness. And you talk about the silence of your colleagues as a wound. At least that's the way I interpret it. Can you talk a little bit about that? Dr. Shannon MacDonald: Yeah, and it's silence of colleagues and also friends. But I think for me anyway, I can only speak about my personal experience — that was the hardest because it created this awkwardness that was hard to get past. So, in my opinion, it's better to say anything or write something if you can't say something. But also, I also have learned, and I understand that it's just so hard and people are so afraid of saying the wrong thing that it's natural to avoid it or to try to say something, and then be too nervous to say something. But I guess, my advice would be to try to write or say something rather than saying nothing because it's so awkward when nothing is said, and it creates an additional stress on that person that's grieving, and sometimes, a sad loss of a relationship for a time or forever. Dr. Lidia Schapira: Sounds like you have used your experience to now, talk about and write about your personal grief, and you're seen perhaps, as a resource for others or a teacher. What does that feel like? Dr. Shannon MacDonald: It feels good. I'd like to be that as much as I can be. Again, it's only my personal experience. I've received feedback that it's helpful, but I'm sure I wouldn't receive feedback that it was unhelpful or negative feedback. But I think that makes me feel like there's some meaning to the writing and the work that I've done, in speaking to others. And I think there's a lot of oncologists, maybe particularly those new to training that are eager for more teaching in the human experience of what we see every day. They certainly want to learn the trade and the skills, and they can find that in textbooks and in our teaching, but the humanistic part of it is more difficult to learn. So, it's been very rewarding to have colleagues and residents tell me that it felt great to be able to ask in a comfortable setting how it feels to have someone die, so that they can understand better how their patients feel. Dr. Lidia Schapira: Can you reflect a little and share with us some of the sort of milestones in your sort of recalibrating and being able to find joy, and then find a relationship and transform your experience into part of who you are and carry with you, but in a way sort of embrace this new place in your life? Dr. Shannon MacDonald: So, I'd say a lot of steps forward and steps back. And if anyone had told me I would be as happy as I am again, now, right after Dan died or within the first year after he died, I would've said no way, that's never going to happen. I'd say in the initial time of his death and months after his death, I had no desire to ever date or be with anyone again. As I mentioned in my essay, it was easier to live in the past than to think about the present in an identity that was no longer what I knew was my identity or the future, was daunting. And I would say, again, time is different for everyone, but maybe after 10 or 11 months, I could be happy again. I could enjoy friends, I thought I was ready to date. And one of my best friends said, “I don't think you are.” And I said, “I think I am.” And then I wore my wedding ring on the first date I was set up on. And I thought maybe foolishly, “Oh, I don't think he noticed or he cared. He knew I was widowed” and he did. And we didn't go out on another date. But in time, I learned to date other people and not feel guilty about it or disloyal to Dan. As I mentioned, I met someone who allowed me to speak of him, which was very important for me that I not lose that past part of my life, and that person could still come forward into new relationships and new friends and family. I still am very close to my in-laws and keep them as part of my family. And I think that keeping my old identity and what Dan did for me and how he shaped me was very important to me in moving forward. And I feel that I'm able to do that now, and know that he lives on in the person he made me, and the other people that he shaped in his life that was too short. Dr. Lidia Schapira: So, the question I'm sure on our listeners’ minds is how has that impacted you in your professional life as a radiation oncologist? Dr. Shannon MacDonald: It allows me to be probably more empathetic rather than sympathetic. I remember being taught in medical school, in my psychology rotation that you can only truly be empathetic if you've been through something. And it's still similar, everyone's experience is different. But for some patients, I think it allows a little more empathy. I think in the initial months, years after Dan died, I was too empathetic. I was too sensitive to the losses that other people experienced. And that made me realize that somehow, maybe I built up some desensitization over time that was very subtle. And after Dan died, I worked hard to build that up again to allow me to work with patients and not be too sad and too empathetic, or too upset by what was happening to them. And I do think that that has happened again, but it's beautiful to be able to empathize, but hard to empathize too much. Dr. Lidia Schapira: So, in the last few minutes, Shannon, I'd love to hear your take on the value of narratives, of stories to bring these topics to our discussions in the clinic, to the curriculum of our trainees, and I think create a community of people who really deeply care about our lived experiences and want to support each other. Dr. Shannon MacDonald: So, I think they're extremely important. I love the narratives. I always look at Art of Oncology and I love the New England Journal of Medicine ‘Perspective’, and JAMA’s ‘Piece of My Mind '. And I also found books; Joan Didion's, The Year of Magical Thinking, and also, those stories by Emily Rapp Black, The Still Point in the Turning World; When Breath Becomes Air by Paul Kalanithi. I think those are three books that I tell my residents to read and narratives, I think we need more of that in the curriculum for our residents and students. And I do feel like there's a generation that is craving that more. I don't know if you've seen this in the residents you mentor, but, in ours, I feel that they're asking more and more for that to be part of their curriculum more so than they had a decade ago. And it may be that this generation is just more comfortable speaking about feelings and acknowledging that that's an important part of medicine. And we want to cure patients. We want to help them live with their cancers for a long time with a good quality of life, and we aim to do that. But the reason we aim to do it is so they can have a human experience. So, that part is so important. It's why we do what we do. And I think that it motivates us to take care of our patients and help them to live as well as they can with their disease. Dr. Lidia Schapira: And we become part of their stories too. I've often thought that in some ways, if we have a strong relationship with patients, we are invited to co-edit those illness narratives, and what a privilege that is. Dr. Shannon MacDonald: I agree. Dr. Lidia Schapira: My last question is; what are you reading now? Dr. Shannon MacDonald: So, what I would recommend that I've recently read for the Art of Oncology listeners would be Between Two Kingdoms by Suleika Jaouad. I love that book. It's also a great audio book. She narrates it herself and does a beautiful job with that. I also recently, probably a year ago now, read Sanctuary by Emily Rapp Black, which I thought was very meaningful as well. So, for your readership, those are two books I would recommend. Dr. Lidia Schapira: Well, Shannon, thank you for an extraordinary essay, for the power of your conversation. And for our listeners, until the next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or a review wherever you listen. Be sure to subscribe so you never miss an episode of JCO’s Cancer Stories: The Art of Oncology that is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org. Voiceover: 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. Additional Reading: My Beautiful Boy Bio: Dr. MacDonald who is an Associate Professor at Harvard Medica School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham in Boston.

Listen to ASCO’s Journal of Clinical Oncology essay “Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter,” by Drs. Maheetha Bharadwaj, Nagda Dipal, et al. Essay authors Dr. Bharadwaj, a urology resident at the University of Washington, and co-author Dr. Dipal, a medical student at Harvard Medical School, are interviewed by host Dr. Lidia Schapira. Drs. Bharadwai and Dipal provide insight on how they use non-verbal communication in the form of Bharatanatyam, an Indian narrative art form, as a way to reflect oncology patient care. TRANSCRIPT   “Mudras in Medicine: A role for dance in appreciating non-verbal communication in the clinical encounter,” by Maheetha Bharadwaj, MD, MS, Mphil; Dipal Nagda, MPH1; and Lipika Goyal, MD, MPhil  (10.1200/JCO.22.00657) Narrator: We present a classical Indian dance piece that depicts a patient and their partner receiving a cancer diagnosis from their oncologist. The primary purpose of this piece was to provide a vehicle for patients, physicians, and caregivers to process a life-altering cancer diagnosis. The piece was choreographed and performed by two of the authors (M.B. and D..), who are medical students and classically trained Bharatanatyam dancers, and the project was guided under the mentorship of the senior author (L.G.) who is a medical oncologist. Through the process of designing this project during the COVID-19 pandemic, the authors also reflect on the role of visual arts in providing a space for contemplation and in promoting nonverbal communication in the era of virtual medicine.   Mudras, or hand gestures, embody one of ancient India’s most visual forms of storytelling and are the threadwork of the Indian classical dance form of Bharatanatyam. Historically performed as a temple dance, Bharatanatyam serves as a vehicle for communicating and preserving narratives from Hinduism’s greatest epics.1-3 Every mudra is intricately crafted and distinctly designed, with each bend of a finger and curve of the wrist representing an object, an emotion, or a state of being. Mudras are interlaced with rhythmic footwork and facial expressions in Bharatanatyam, producing a language that connects the performer to themselves, to the audience, and to the story being told. The style of Bharatanatyam specifically has been previously adapted for therapeutic relief and healing among survivors of natural disasters and victims of trauma. Although some artists have explored the use of Bharatanatyam to convey medical narratives, none to our knowledge have directly covered the nuances of clinical relationships in the context of a cancer diagnosis.   A few weeks after the onset of the COVID-19 pandemic, we found ourselves in an exchange of mudras over coffee on the patio. As both medical students and trained Bharatanatyam dancers, we were lamenting the difficulties of communicating to patients with masks. “He couldn’t hearme,” one of us expressed. After some pause, the other extended her right hand in Katakamukham toward her chest, whereas her left hand also in katakamukham drifted toward her ear, together signifying a stethoscope. “Is this how you asked your patient if you could listen to their heart?” she asked. We both smiled. With her hands in place, she leaned her torso to the left and extended both hands in chaturam. She painted a rectangular frame in mid-air, signifying a chest x-ray. In silent melody, we played call and response, gliding our hands across the table and delicately placing our fingers into mudras.   As case counts ticked upward, distressing news filled our personal and professional lives and we both found ourselves turning to mudras to express our states of emotion and responses to the pandemic. It dawned on us that dance may play a critical role in reflecting on and processing difficult medical situations, especially in the isolating environment of the pandemic. We thus embarked on a project to explore the relationship between a patient and an oncologist through Bharatanatyam. Over the course of our clinical years in medical school, we collaborated with patients, clinicians, caregivers, and artists to choreograph this Bharatanatyam narrative medicine project. Mudras were combined with facial expressions, eye movements, and footwork to craft a narrative between a patient, a doctor, and a caregiver in the setting of a cancer diagnosis. In what follows, we describe our choreographic process, the resulting narrative, and key takeaways from this artistic exploration. We propose a role for Bharatanatyam and other visual arts in enabling both the performer and the viewer to process narratives of cancer, suffering, healing, and hope. We further use this piece as a call to reclaim the importance of nonverbal communication in the therapeutic relationship.   Developing and Choreographing the Narrative We first reached out to several physicians to help develop a medically accurate narrative. Our clinician collaborators included an oncologist who specializes in cholangiocarcinoma, a hematology-oncology fellow, two head and neck surgeons, and a palliative care physician. Our patient and caregiver collaborators included three patients undergoing treatment for metastatic cancer and two parents. Through multiple conversations with these partners, we developed our narrative. For musical and artistic input, we partnered with Indian Raga, an organization dedicated to the celebration of South Asian art and music. Indian Raga developed a musical score for the piece, provided a dance collaborator, and offered creative feedback on our choreography.   Our choreographic process was iterative, as we moved from the dance studio to conversations and back again to the dance studio. We incorporated the feedback from our collaborators into our storyboard and our final choreography. We recorded the performance on March 1 31, 2021, at the Cambridge Community Center for the Arts, in Kendall Square.   The Dance Narrative A video of the performance can be accessed at https://youtu.be/Nru_nWiiDXk.   Our narrative details the journey of receiving and processing a cancer diagnosis and features three members of the therapeutic triangle: the patient, the caregiver, and the physician.   Part 1: The diagnosis (0:00-2:05). The first part opens with a couple that, amid a jubilant celebration, receives an urgent phone call to present to their doctor’s office. At their appointment, the physician performs a history and physical examination and subsequently prepares to disclose the patient’s diagnosis of a worrisome mass visualized on a chest x-ray. We drew from mudras in the existing Bharatanatyam repertoire to depict clinical objects. For instance, a stethoscope was depicted using katakamukham as the earpiece and the bell, whereas an x-ray was depicted by drawing a square in the air using chaturam.   Part 2: The malignancy (2:05-3:20). The second section represents an interpretation of the physiologic growth and uncontrolled spread of malignancy. Our change into redcolored garb signifies a switch in character from representing three individuals to three cells. At the beginning of this section, the three cells are depicted as physiologically normal, dancing in unison with each other. Their uniform vitality is demonstrated with the suchi and alapadma mudras. One cell undergoes a somatic mutation and becomes malignant, gaining ruthless vigor in her dance form. We demonstrate rapid replication of the malignant cell with the mudra kartarimukham. As the malignant cells continue to replicate, they pull resources and grow in their harsh dynamism, portraying the unchecked growth potential of cancer cells.   Although the choreographic intention of this section was to represent a growing malignancy, many of our reviewers provided varying interpretations, including a depiction of the patient’s inner anxieties, the therapeutic fight against the cancer, and the turmoil of treatment resistance.   Part 3: The emotion (3:20-5:05). The third and final section returns to the patient, doctor, and caregiver. Here, we explore the nuanced emotional journeys of the three characters as they come to terms with the gravity of a cancer diagnosis. Each has their own moments of grief, fear, recognition, and solidarity. The caregiver expresses concerns of the patient passing, and the doctor struggles with her ability to offer hope. The patient is overwhelmed with denial, anger, and grief. The piece ends in a message of unity, as the patient, doctor, and caregiver embrace their role in this shared journey.   Reflections What began as an exchange of mudras over coffee blossomed into a reflective process to understand the role of Bharatanatyam within the therapeutic triangle of the patient, doctor, and caregiver. Witnessing how reviewers who were unfamiliar with Bharatanatyam responded to our narrative dance piece shed light on common themes that emerged from engaging with this piece. Here, we describe two key takeaways that surfaced through our own reflections and discussions with members of the medical community. First, we were reminded of the role that visual art holds in promoting self-reflection and empathy for all members of the therapeutic relationship. Second, facial expressions and body language from the dance narrative resonated with the experience of oncologists and patients in the clinic. The repeating motif of body language served as a critical reminder of the role of nonverbal communication in the therapeutic relationship. In the era of virtual training and medicine, we use performative arts as a reminder to deliberately preserve nonverbal communication when interacting with patients.   Visual arts as a space to process, reflect, and empathize. Our dance narrative received a range of interpretations, only some of which matched our original intention. These similarities and differences in choreographic intention and audience interpretation demonstrated the power of visual arts in both representing universal emotions and reflecting one’s personal experiences. For us as choreographers, the dance studio became a space of contemplation and healing. We dissected the impact of illness on the human body, adjusting our limbs and contorting our faces to embody raw human emotions of pain, anguish, and resilience. As viewers, patients and physicians also expressed moments of reflection while processing our piece. For example, many physicians discussed how the piece reminded them of the personal toll that repeated delivery of bad news can take on them as a clinician. Although one clinician thought that this difficulty in delivering bad news was best represented by the emotional end of the piece, another felt that this internal turmoil was better portrayed through the middle section that consisted of more intense footwork. Engaging with our dance piece encouraged viewers to recognize certain universal clinical themes while also providing room to reflect on nuanced personal experiences.   As a broader entity, visual arts have often been underrepresented within the field of medical humanities. Searching the literature for examples of visual arts curricula across medical schools across the United States yielded a plethora of prose and painting-based visual arts curricula yet very scarce incorporation of movement-based art.7-10 We propose that dance plays an important role within medical humanities curricula in understanding illness, emotions, and empathy. Movement-based arts promote a sensory experience of illness and an expression of physical and emotional states that cannot be conveyed through words alone.11 With more medical training programs embracing humanities in clinical training, we attest that the visual arts, particularly movement-based art, should also be considered.   Recognizing the value of nonverbal communication. As the COVID-19 pandemic progressed, virtual medicine replaced in-person encounters and masks grew to be a necessary component of the hospital environment. Like many, we encountered muffled words and frozen facial expressions on Zoom. Faced with the dramatic change in verbal communication as medical trainees, our choreography unfolded into an exploration of the ways in which physical space, facial expression, and hand gestures enhance the clinical relationship.   Early in our choreography, we shared a rehearsal video with our collaborators. Although all immediately recognized the\ role of the patient and the doctor, several felt that something critical was missing. One patient felt that the physical distance between the doctor and the patient was too great, and one physician pointed out the lack of compassionate physical contact by the oncologist. Inspired by these conversations, we re-entered the dance studio and experimented with the physical space our bodies occupied. We explored nonverbal ways to convey care and concern. In our choreographic revision, we had the doctor place a hand on the patient’s shoulder when she was coughing, and we incorporated a stool to allow the provider to be eye level with the patient and increase the portrayal of open communication. Intentionally incorporating the empathetic touch into our choreography increased the perception of care between the doctor and the patient.   In a time where we are forced to embrace virtual care and communication, our choreographic process reminded us of the critical role of nonverbal communication in the therapeutic relationship. We found that physical space, facial expressions, and eye contact are just as integral to the clinical encounter as they are to Bharatanatyam. What we have lost through the screen is the unspoken care held in the extra moment of eye contact, the supportive forward lean of the torso, and the comfort of a hand on the shoulder. These wordless extensions of care are a cornerstone of patient satisfaction and the therapeutic alliance. With masks and virtual visits becoming potentially permanent fixtures in medicine, we highlight the importance of trainees and clinicians being deliberate in using nonverbal communicative techniques in caring for patients.   In our exploration of Bharatanatyam within Western medicine, we found that, ultimately, the qualities most coveted in a dancer and a physician are one and the same: a broad understanding of the human body, a deep sense of empathy and humility, and a profound commitment to using body language to support the journeys of themselves and those around them.   Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which cover a range of educational and scientific content, and offer enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. Dipal Nagda, medical student at Harvard Medical School, and Dr. Maheetha Bharadwaj, urology resident at the University of Washington. In this episode, we will be discussing their Art of Oncology article ‘Mudras in Medicine: A Role for Dance in Appreciating Non-verbal Communication in the Clinical Encounter.’ At the time of this recording, our guests have no disclosures. Dipal, Maheetha, welcome to our podcast, and thank you for joining us. Dr. Maheetha Bharadwaj: Thank you for having me, Dr. Schapira. Dr. Dipal Nagda: Thank you for having me. It's a pleasure to be here. Dr. Lidia Schapira: So, tell us a little bit about the origin for your narrative. You've told us about your collaboration in dance, and your appreciation for what movement and dance can bring to self-expression and to the clinical encounter. But let's start by hearing what brought the two of you also to collaborate on a narrative, a written piece. Dr. Dipal Nagda: I'm happy to get started on this one. So, Maheetha and I met our first year of medical school and we hit it off right away for a variety of reasons, one of which was that we both shared a training in Bharatnatyam. And so, we had actually performed early in our first year of medical school, a piece for a local performance at Harvard, and then, around the start of the COVID pandemic, which was about two years into our second year of medical school, right in the middle of our clinical rotations, we both found ourselves pulled from the clinical environment, with a lot of time on our hands. And as dancers do, we both turned to dance in our own ways, and collaboratively, to try to find a way in which to channel some of the feelings and emotions that we were having into a creative performative piece. Maheetha, I don't know if you have anything else to add to that. Dr. Maheetha Bharadwaj: Yeah. No, I think that sums it up pretty well. Just one thing to add is that both of us remember kind of talking to each other about how, when we came back from COVID, right around June of 2020, our clinical experience had changed dramatically, in that, masks were now mandatory. And I distinctly remember thinking about how it was hard for me to hear this one patient who was this 90-year-old woman, and she was a little bit hard of hearing. I just remember feeling that that encounter was just so much more difficult, and Dipal and I have been talking about encounters like these ever since we came back after the first surge of the COVID pandemic. And I think just all of that also kind of led to this idea for this project. Dr. Lidia Schapira: And so, the project starts with the two of you who are dancers and very aware of the power of movement, again, just for yourselves, right? And you're now thinking about exploring that as a narrative, or as a story, and you chose cancer as your example. What path led you to cancer? Dr. Maheetha Bharadwaj: I think cancer is a disease that can affect everyone. And I think, I, personally, have had family members affected by cancer. My mom is a palliative care physician. So, talking about cancer and cancer-related illnesses is not new for me and my family. And on top of that, I think the emotional impact of having such a life-altering illness is something that I think was deeply affected by COVID. We saw that patients weren't coming into the hospital, from a surgical perspective, patients weren't getting the treatment that they needed, and those treatments were being put off. And I think that adds a wealth of anxiety to an already very stressful situation. So, I think for both of us, I know that Dipal is really interested in Oncology at the moment, and me, as a Urologist interested in Urol Onc as well, I think that topic really hit home for both of us. And I think it was a great way to kind of also explore the different types of emotions that someone might feel with a life-altering illness. Dr. Lidia Schapira: So, did you co-create the scenario, the narrative? Dr. Maheetha Bharadwaj: Yes, we did. Dr. Dipal Nagda: Yeah. So, I would agree with everything that Maheetha said. And in addition, I think when we were originally thinking about this, we were thinking about dance in the setting of a patient-doctor relationship. And so, when trying to map out the numerous patient-doctor relationships that exist within the field of Medicine, I think both of us felt that within Oncology, specifically, there is that longitudinal component, and there is that, as Maheetha mentioned, that deeply emotional piece, not only for the patient, but for the physician as well, and caregivers. And while that definitely exists in other fields, I think within Oncology was one that we felt would really come alive in a dance narrative, to both explore that collective journey of the patient, doctor, and caregiver and the individual journey of each of those three individuals. Dr. Lidia Schapira: Well, I can speak for the readers of Art of Oncology and say that we don't disagree with you, we totally agree that there are very strong bonds and that there's an emotional resonance to being a professional caregiver, and of course, of the patient and family members and family caregivers. So, kudos to you for recognizing that. How does movement affect communication? And how did the experience of that additional layer of isolation, and perhaps masking, and distancing during COVID affect your entry into this world of Medicine and Cancer Medicine? Dr. Dipal Nagda: That's a great question. First, I think for my specific clinical rotations, I was in an ambulatory predominant clinical rotation site. And so, a lot of the interactions that I was having in my early clinical years were via virtual patient interviews. And I think that is a place where movement really came out, and I found turning to hand gestures. And I also found that there was a certain distance via zoom that the clinician and the patient were trying to overcome, that isn't totally, from what we found through this piece, able to be overcome through zoom. And I think that was really perspective-changing, in terms of realizing the value of movement, and the value of proximity and the distance, and the ways in which eye level, and body gestures, and physical contact really impact that relationship. Dr. Lidia Schapira: I read in your narrative and in watching your video, sort of the lament for not having the ability to move and touch. And I'm very happy that you're able to express that, and I hope that now that things are more normal, that you have gone back to feeling that you are freer to connect with patients, and with your colleagues, even, through facial expressions and touch. And so, tell me a little bit about how you view movement as a potential tool in your therapeutic connections with patients going forward at this early stage of your careers. Dr. Maheetha Bharadwaj: I think that's a fantastic question, and a question that's really important because, in Medical Education, we often talk about the Art of Medicine, which I think, cannot be emphasized more in this time of wearing masks in hospitals. And just as Dipal had said, I also found myself with patients compensating for wearing masks. Patients often ask, "Are you smiling under that mask? Are you frowning under that mask? I can't tell." And the ways in which we compensate, which is, coming down to the level of the patient. So, sitting down in a chair, or sitting down at the edge of the bed with the patient's permission. You know, in pre-op sometimes, I actually remember distinctly doing this the other day, I was on the colorectal service, and oftentimes, colorectal cancer is diagnosed in one day, in one week, and then you have the surgery two weeks later. And patients are just kind of taken for this whirlwind of emotions while they're contemplating chemotherapy versus surgery, and before and after surgery. And so, almost everything happens so quickly, and in pre-op, during the pre-op time, before they go into the procedure, it's amazing how much as medical students having been working in these environments with masks, we have adapted to be able to recognize when someone is anxious, nervous, crying, not crying, sad, happy. And I distinctly remember this one patient who was very clearly nervous, and I just took a little bit of time before signing her in, checking her consent forms, I just said, "Hey, how are you? Are you okay?" And the gesture was, going to her bedside, just laying an arm next to her hand, in between her hand and her blanket, and saying, "Are you okay?" And immediately, this patient burst into tears. And she said, "I'm not. I was just diagnosed last week, and next thing you know is, surgery is this week." And it's just because the masks are there, it kind of makes me be more aware of what the patient is feeling because I can't immediately tell. So now I'm thinking about it a lot more and I'm trying to understand it a lot more. I'm paying more attention to it. The ways that we compensate is, trying to bring our physical bodies a little bit closer to the patient in order to compensate for the distance brought into that rapport by the masks. And I think that's like really, really crucial. Dr. Lidia Schapira: It warms my heart to hear you talk like that because instead of viewing this as an impediment, you work extra hard to try to understand the emotion that your patient is feeling, to connect with her or him in that circumstance, and to show some humanity. And it's amazing how much comfort that can bring to a person who is feeling extremely vulnerable and anxious. Dr. Maheetha Bharadwaj: Yeah. And I just want to add that, I had been taking care of this patient after her surgery for the entire week. I was rounding on the weekend as well, and we discharged her on a weekend. And as I was giving her discharge papers, she burst into tears again. And she said, "It was lovely seeing your face every day. I look forward to seeing your face every morning. It's nice to have that continuity of care." And I did feel that that pre-op interaction made a difference. It 100% made a difference in how she viewed us, our care, and the hospital system itself. Dr. Lidia Schapira: So, bottle that feeling, and on a bad day, bring it out, and it'll carry you through some of those more difficult moments in medicine. So, tell our listeners a little bit how the two of you took your dance to a written narrative. Dr. Dipal Nagda: Absolutely. So, actually originally, when we came up with this idea of a dance, we did not think about sort of the next steps from that original dance narrative. And when we started to show our piece and our choreography to different physicians, but more importantly, I think the patients and the caregivers who watched our piece, who had so, so much, not only input and feedback for us, but their own reflections, and their own takeaways. And what was incredible, was their own interpretations. That really took us for a surprise is, people find different pieces of the visual arc of our dance piece to relate to, to comment on, to help us improve. And I think Maheetha and I both realized that the benefit of visual arts, specifically, this dance piece, wasn't just from doing the dance itself, but from interacting with the wider community of people who are either watching our piece, or providing feedback. And that sort of bridged, for both of us, this idea of, "Let's try to put all of these things that we're feeling into words, into concrete ways in which we can use visual arts broadly in medical education." Dr. Lidia Schapira: And what was your relationship to the third and senior author in your paper, Dr. Goyal? Dr. Maheetha Bharadwaj: Dr. Goyal has been incredibly supportive throughout this entire process. I think early on that Dipal and I were looking for mentors who are familiar with Indian classical dance, familiar with Indian culture, but also had a strong passion for Narrative Medicine, for understanding and improving upon empathetic care for patients. We searched and emailed many, many mentors, all whom gave us valuable feedback, and we've acknowledged in our acknowledgement section, but Dr. Goyal for us, really took our vision under her wing and said, "You know, I think what would be great is, if you could show the beginnings of your narrative, whatever rough choreography you have, to patients." And she helped us connect with some of her own patients, and to be able to give feedback on the narrative, and improve the narrative to be perhaps more all-encapsulating, more relatable to a wider group of individuals, to tweak the narrative itself a little bit. I think she's been incredibly instrumental in helping with that, but also shaping our narrative as well, and kind of pinpointing, "What exactly do we want to convey? And what do we want to tell people? What do we want to tell the world?" Dr. Lidia Schapira: So, what is the take-home message from your narrative? Dr. Dipal Nagda: I think for me, beyond the scope of what we've written, this project for me, really served as a reminder of the things that matter to me outside of the clinic, and how all of those passions that we have for, Maheetha and I specifically, dance, really not only provide us a reflective outlet outside of the clinical environment, but I would argue it enhanced our performance as doctors, our relationships with our patients, and I think truly contribute to the clinical environment as well. So, I think that's a personal takeaway for me, and a really important reminder as I think about applying to residency in the next step of my life, but then I think broadly, as we are starting to recover from the COVID 19 pandemic, and we're thinking about how to deliver care in both measurable and non-measurable ways, I think there's parts of the clinical environment that matter so deeply that we don't always think about. And for us, it was really non-verbal communication, and body language, and how to keep that authenticity alive. And if we know, you know, as Medicine turns more and more to virtual care, how do we train the next generation of medical providers to really keep some of those aspects of body language, and eye contact, and non-verbal communication really alive in virtual delivery of care. And so, for me, that was sort of the broader call to action. Dr. Lidia Schapira: Any plans to do more pieces? Dr. Maheetha Bharadwaj: Absolutely. I think this is just the beginning, and Dipal and I have already talked about different topics that we could do, particularly because, Bharatanatyam, which is the style of Indian classical dance that we have used to choreograph this narrative, has always been heavily tied to religion. And now in the modern days, we're seeing the secularization of this art form, or in other words, the use of this art form and other Indian classical art forms to depict and portray more secular pieces. Pieces that convey aspects of human lives that aren't necessarily connected to religion. And I think that's incredibly important, and you know, Narrative Medicine is a field of its own that I think is very important in order to, as people said, kind of craft the Art of Medicine within you, and within each clinician. And so, we've definitely talked about, for example, having stories about COVID, potentially having stories about erectile dysfunction - topics that aren't necessarily talked about on a day-to-day basis, but are relatable to each of our fields in different ways. And I think the goal of that is to be able to reach people, to be able to talk about topics that are important to people, but people don't have awareness of. To increase awareness, education, and I think there's many avenues we can take. This is just the beginning. Dr. Lidia Schapira: Well, it's been a pleasure to work with both of you. I'm very impressed by what you have already accomplished. I love hearing your humanistic visions for what good Medicine is, and your contributions to the Art of Medicine. So, thank you so much. 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'll 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. 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.  Bios Dr. Dipal Nagda is a medical student at Harvard Medical School Dr Maheetha Bharadwaj is a urology resident at the University of Washington. In this episode we will be discussing their Art of Oncology article Video Performance: https://youtu.be/Nru_nWiiDXk

Listen to ASCO’s Journal of Clinical Oncology essay, “The Will to Go On,” by Dr. Sumit Shah, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Shah. Dr. Shah explores a patient’s will to live and recounts witnessing a powerful bond between a patient and her spouse. TRANSCRIPT Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.   I'm your host, Lidia Shapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. With me today is Dr. Sumit Shaw, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. We'll be discussing his Art of Oncology article, ‘The Will to Go On.’   Full disclosures for our guests will be linked in the transcript and can be found on the article’s publication page.   Sumit, welcome to our podcast!   Sumit Shaw: Thank you, Lidia! It's a pleasure to be here. Thank you so much for having me.   Lidia Schapira: It is our pleasure. So, before we start to discuss ‘The Will to Go On’, I'd love to ask you a general question about what you read and what you're currently reading now, and what you can perhaps recommend to our listeners.   Sumit Shaw: Yeah, absolutely, Lidia. So, when I'm not reading randomized clinical trials in oncology, I try my best to read for enjoyment. I typically right before going to bed. I tend to gravitate towards work outside of medicine. Currently, I'm reading All the Light We Cannot See by Anthony Doerr, which is a World War 2 story told through the eyes of a blind French girl and a German boy in France and how their parallel paths eventually intersect.   Doerr writes so beautifully and uses language to create these very vivid scenes. It's really a remarkable masterpiece that's taken him over 10 years to write. So, it’s quite extraordinary and highly recommended to our listeners and readers.   Lidia Schapira: Thank you! I love that book. I share your enthusiasm. Let's move now to your story, ‘The Will to Go On’. You describe an encounter with patient Diane and her husband during your 2-weeks stint as the attending physician in an academic oncology inpatient service.   So, let's start and unpack that for a moment. How do you envision that role in terms of your connection to patients? I've heard many colleagues who say that it's very difficult because they don't know these patients and they haven't cared for them. How can you introduce some humanism into that role?   Sumit Shaw: Yeah, absolutely, Lydia. So, we have several services that deal with just Oncology at Stanford. My favorite service is the teaching service where we're working with residents and interns and fellows, strictly with patients who have cancer.   It is a very emotionally charging month for our trainees. And a lot of my responsibility, I think, is actually keeping that dynamic and the culture of the team to be as positive as possible.   So, I have certainly a responsibility to my patients, which I think is really important, but really also to the trainees. And so, I think it's incredibly important that we model good behavior.   So, that's what I see as a large part of my job is really having these very difficult conversations with patients for the most part that we've never met because they're often treated by their own primary oncologist who's someone different than I, and oftentimes even more challenging given that they're typically coming in with a disease that we may not be even familiar with, given that we mostly subspecialize at Stanford as well.   So, that can be very difficult to meet a patient that you don't know as much about their disease and, too,  is that you don't know much about them as a person. And then to have to be the liaison between a patient's primary oncologist and what you think is best for them there in the hospital. But I do think that sitting by the bedside, maintaining eye contact with our patients, and putting your arm on them is so important, not only for the patient to feel that there's still a connection with not just you but their outpatient oncologist, but also for the house staff to see that, that there's so much about humanism in oncology that makes it such a special field.   Lidia Schapira: So, your patient Diane has metastatic lung cancer, and you are a GU medical oncologist, so that is a clear example of what you just told us. And you tell us that she's now admitted to the hospital having suffered many complications of that same immunotherapy that you say she had hoped would be her savior. Tell us a little bit about how you interpret your role as a teaching attending, and also, as a communicator with families when you see patients who are coming in, with toxicities from treatments and treatments that may end up being futile.   Sumit Shaw: I think one of the more challenging aspects of our jobs as oncologists is actually seeing patients that have complications from their own therapies as opposed to sick coming from cancer itself.   I think that it adds a layer of responsibility, and almost sometimes guilt that you may have brought this on. Obviously, these are not our intentions but we have to be so humble that our therapies can be incredibly toxic.   And we often talk about these drugs like immunotherapies, which are the brand-new shiny object in oncology, where everyone is talking about it because it's on every single commercial out there so patients really want it.   But we sometimes mitigate some of these symptoms and the side effects that can really affect our patients. So, it's interesting in the outpatient world, we talked about these drugs as potentially life-prolonging or potentially even life-saving. But we see the complications, you know, very closely in the inpatient setting.   So, we have to discuss and kind of realign expectations, and make sure that our patients are now aware that these drugs do have toxicities. But hopefully, we can try to overcome these toxicities and get you back to where you were before you came into the hospital.   Lidia Schapira: So, now let's go and meet Jim and Diane. Diane is your patient but Jim is an important character in your story. They've been married for over 50 years, and Diane is the one who is hospitalized with all the complications of treatment. And you talk about entering the room and you use the first person.   So, were you alone to meet, or did you have an entourage? I ask this because I've found and I think it's important to also address the difference between walking in alone or walking in as a team leader as you say, understanding that part of your role is to model behavior for your trainees.   Sumit Shaw: I actually did have an entourage with me. I feel that patients and families really appreciate that. I try to walk in last, typically when I go into a room, largely to empower the trainees to serve as the primary physicians.   And when things get a little bit more challenging in terms of discussions that require a certain level of understanding of oncology, I tend to step into that situation. But I won't forget standing in the corner of Diane's room, seeing Jim wheeled into the room and just seeing how these two individuals just looked at each other so intently, and you can just see visibly how much they missed each other based on the expression of their faces, and that something will always stay with me. But it was quite an incredible moment.   Lidia Schapira: So, you call a family meeting because you think that Diane's prognosis is very poor. And you want to have goals of care discussion. And so, by what you call a tiny hospital miracle in the pandemic, Jim, who is also a patient in the hospital waiting for cardiac devices wheeled in accompanied by his son, Diane is there with her daughter who's a nurse at the bedside. And you have a family meeting, which is actually the celebration of this reunion and a clear demonstration of their love. Tell us a little bit now looking back, what actually happened in that meeting?   Sumit Shaw: Yeah, so these meetings can be very difficult to navigate largely because traditionally, we're taught to ask these very open-ended questions to respect patient autonomy, and have patients make their own decisions about this very sacred question about what would you want to have done towards the end of life. These can be very, very difficult conversations to have, obviously.   But I also feel that this puts an undue burden on a lot of patients who may not have as much experience as we do in understanding the consequences of these decisions. So, for instance, especially in this DNR discussion, I tend to have less of an open-ended conversation with our patients.   So, I tend to be very direct and offer my recommendation, and then hope that the family would also be in agreement. And certainly, we put those questions out there to them and 9 times out of 10, they are in agreement. I think it was also very helpful that their daughter, Susan, was also in healthcare as a nurse, so she was able to understand some of the implications of this.   But these conversations can be very difficult in general but I do sense many times, I actually get a lot of comfort after these conversations because they often go relatively well and you can just see a sense of relief that's taken off the shoulders of our patients, that is actually very comforting to see.   Lidia Schapira: So, what makes this situation so special? The reason probably, and I'm going to ask you this question in a few minutes, that led you to want to write about it and share this experience with your colleagues is the dynamic between the two partners, right? And it looks like Jim perhaps had been the decision maker and Jim's input here was really important. And Jim wanted a quick resolution to this question. Tell us a little bit about how you felt watching that happen right in front of you.   Sumit Shaw: It was quite extraordinary in a lot of ways because you could see that Diane was very much dependent on Jim. Prior to her becoming sick, she was a very spry and spunky elderly woman. But you could see that she really deferred to Jim in a lot of ways and her children to explain to her what they thought was best for her. And so, when Jim was certain that they needed to make a decision right then, I actually was taken aback because I thought that it would take much longer given Diane's ambivalence about the situation in terms of, she was just really confused. She didn't know whether to be DNR denied. She didn't know whether to pursue comfort measures to keep on going. And I think Jim's reassurance really helped her.   Lidia Schapira: One of the things that made this meeting so special was that it appears that it was Jim's presence and his resolve to reach a resolution that moved the meeting along, and this is something that seems to have struck you, and you use the word in your essay that there was comfort in that. Can you tell our listeners a little bit more about how Jim sort of took the role to advance the conversation?   Sumit Shaw: Yes, it was very clear that Diane was not going to make a decision without Jim. Not only did Diane's daughter, Susan, mention this, but Diane herself said that she needed to have Jim in the room if she were going to make a decision about both the DNR status and about overall goals of care in terms of moving forward with comfort measures.   So, when Jim came into the room, it was very clear that she looked right to him whenever these questions were asked to her about what she should do next. You could just see that these two people knew each other so incredibly well and I just felt that she almost felt that Jim knew her better than she knew herself.   So, while we certainly want to respect patient autonomy, and we always wanted this to be Diane's decision, it was very clear that she was going to defer to Jim. It was beautiful in the sense that Jim was so resolute because he made a very clear decision that he thought would be best for her. And she agreed. And after that, there was no going back and revisiting this question.   It seemed that there was a burden that was lifted off her shoulders and she was able to even breathe a little bit more comfortably after hearing from him, and that was a really beautiful moment to witness.   Lidia Schapira: You have this beautiful phrase there when you say, ‘Husband and wife in matching hospital gowns embraced for the first time in weeks.’ There's such warmth and there's so much love that you can even sense in the dialogue. So, you leave the room, and then what happens?   Sumit Shaw: So, we left the room, and I remember the entire team was talking about this beautiful interaction that we saw between two people. And then, the next morning, I come into the resident's room, and the resident looks at me incredibly forlornly and says, “Dr. Shaw, Jim died last evening.” I just couldn't believe it. I was shocked. I was in disbelief. We had just had this beautiful meeting and orchestration of getting two people together and witnessing it was almost like a beautiful ceremony in some senses in this reunification. And now to hear that Jim died the day before receiving a life-saving cardiac device was so troubling.   I think it raised a number of questions and emotions in my head. One was shocking disbelief as I discussed but two was gratitude that we were able to arrange for Jim and Diane to have that final moment together. Then three, I was just so worried about Diane and how she would react to this news. So, that's why I wanted to rush to her bedside as soon as possible to see how she was doing.   Lidia Schapira: And so you did! Did you go alone? Did you go with the team?   Sumit Shaw: At the time, I actually went alone, because the team was still rounding with other patients and I just felt an obligation to see her right away. So, I rushed to the bedside and it was very clear that she had already heard the news from her children. She was absolutely stunned and she was in a delirious state.   She wasn't able to verbalize and she was just faintly moaning and staring at the wall in front of her. It was a very difficult sight to see. And for me at that moment, I wanted to offer my condolences, of course, but I also think that there's a lot of importance in allowing families to have time and space to grieve. So, I tried to make myself a bystander as much as possible, not make myself the center of this conversation so I allowed them time to process.   Lidia Schapira: Witnessing is an important part of accompanying patients, right? As we're there, we're just we're present, we're maybe silent, we're just there expressing our support with compassion, and then we get to the end of this story, tell us what happened to Diane, and how that made you feel?   Sumit Shaw: So, after Diane received this news, she was obviously in shock. She continued to have very labored breathing, but we just discussed her prognosis the day before. And we had discussed that her timeline would likely be measured in weeks or months, potentially based on how she was looking.   And as oncologists, we're conditioned to know when death is imminent, typically within hours or days, and she did not have that look, which is why it truly shocked me just to learn hours later, while we are on rounds that a nurse paged us to tell us that Diane had just died.   And again, the same feelings of shock and disbelief, like, how could this be possible just hours after her husband passed? I think, again, many questions surfaced. The first question as a physician and as a scientist is to think about, ‘Well, was this brought on by a physiologic response? Could the stress of the news precipitate a hypertensive crisis, which led to flash pulmonary edema, and then hypoxia and arrhythmia, right?’ We tend to try to create a story in our minds about how could this have happened and rationalize this. Could she have had Takotsubo cardiomyopathy - disease of the broken heart - or was there something that's within her that told her that now is a good time for her to pass? That's a question that I really struggled with for some time.   Lidia Schapira: How did you talk about it with the team?   Sumit Shaw: Yeah, I think one of the fundamental struggles in our profession is balancing the ego that's required to take responsibility for another person's life, with the humility to acknowledge that our therapies and our understanding of the human condition is very limited.   So, I think, when I was talking to the team, I felt that in this situation, I felt that no matter what we could have done medically for Diane in this hospitalization, either to keep her heart pumping or to keep on perfusing her organs, she was going to declare herself and that she decided that this is her time.   So, this is obviously very difficult for the house staff and for myself to really accept. You feel almost a sense of responsibility, but also you saw two beautiful patients getting together, and then 8 hours later, neither of them is around. It was truly a heartbreaking scene. But I asked that, you know, the House staff just to be kind to themselves and kind to each other. And also, just try to appreciate the beauty in what we saw as well.   Lidia Schapira: You write in your essay that this scene put into question for you, perhaps that the will to live or deciding to let go is more powerful than physiology that there's something else. In reflecting upon what you saw and what you witnessed there, has that changed a little bit how you approach the time that somebody lets go or how much power the mind has over the body's ability to be in this world?   Sumit Shaw: Yeah, I feel that it's really humbled me, I just feel that there are existential forces, beyond our therapies that really determine the longevity of life, and that it's made me realize that our therapies are very limited in their utility. And if a patient decides that they no longer want to keep going, and they have come to peace with the fact that this is the end of their life, they will make this decision.   We've all seen this as well in our own practices. The times that you come by the bedside of a dying patient and just hours after they meet with you and their family, and you let them know that it's okay, you see that they pass.   So, it's an extraordinary thing to witness and certainly, a privilege, and this concept of a will to live is a fascinating one that I read a lot about as well that really inspired me to look deeper into this subject.   Lidia Schapira: Years ago, there was a beautiful essay published in the Art of Oncology by Steve Greenberg. It talks about a physician who made a house call to a patient to basically allow her to die naturally. And he sat at her bedside, and whatever happened in that room led to her peaceful passing.   So, I think a lot of very thoughtful, humanistic physicians in our specialty have witnessed these moments, and they've been transformative, really.   So, my last question to you is, how did this encounter and this experience change you? And if it did, what do you now bring to the bedside or the next consultation that perhaps wasn't quite there before?   Sumit Shaw: So, this really inspired me to dive a little deeper into this concept of a will to live and really, truly try to understand that. There's actually a psychiatrist that I read about, that I believe, that you actually pointed to me towards is a psychiatrist named Harvey Chochinov..   He actually wrote about this concept of a will to live back in the late 90s and early 2000s. And his research was really at the crux of the death, dignity, and physician aid in dying, conversations that were being had in Oregon at the time. And Chochinov was able to identify certain positive factors that reinforce a will to live, such as a sense of well-being, low anxiety levels, a strong commitment to religion, or living with a spouse.   But unsurprisingly, he also found factors that erode the will to live. These include shortness of breath, and physical suffering, such as pain. But there are also some existential factors that also lead to an erosion of the will to live, including a loss of dignity, or a sense of being a burden to others, which also was a significant risk factor.   So, when I'm putting this together, for me, I tend to think about, are there things that we can mitigate, such as physical pain and shortness of breath to potentially improve a patient's will to live, or are these more existential and are those things that I cannot control, and maybe I should just be more okay with that as well. And I feel if the patient has come to a certain conclusion, I feel that I feel more comfortable now not trying to convince them otherwise and my job is to reassure them and let them know that we're going to care for them and respect their decision. So, I think that that's largely how this scene has really changed the way that I practice now.   Lidia Schapira: My really final question is what made you want to write about this, many people write to process experiences, but then to share it with colleagues and with people that you've never met.   Sumit Shaw: I actually remember going home that evening, after hearing about  both Jim and Diane. I went home to my three boys, and my wife, we were at the dinner table. And when my wife asked me, how was your day, and I probably responded with a typical, it was fine, pass the potatoes kind of comment.   And then, I said, ‘Wait, no, let me reflect. Actually, my day was not fine. I actually saw one of the most extraordinary scenes that I've ever witnessed in medicine so far.’ So, when I told this to my wife, who's also a physician, she's the one that actually encouraged me to write about it, largely for two reasons.   One is to process, as you mentioned, it was very clear that this had a huge impact on me, but two is to remember this as a story. At the end of the day, our lives and our professions are a collection of stories and this is one of the more remarkable patient stories I've ever been a part of. So, that was a big part of it.   And then, the question about publishing, I think is an interesting one, especially in this day and age, because you can either publish in a forum like this, or you could also just tweet about it and get out to thousands of people within seconds at the click of a button. But I think that storytelling is so fundamental to the medical profession in a lot of ways, in the sense that we as doctors are really storytellers. We hear and tell stories of people afflicted with illness and we share this with others to teach and learn.   This goes back to our days in training when we were sitting in the resident room and the chief resident ask you to share a case. Essentially, we're telling a well-structured story of a person who fell sick, and using that experience to teach others.   So, I think by publishing, I'm hoping to share with the community of like-minded individuals to create a culture about sharing about medicine and to relate, and hopefully have people who can relate to my piece and reflect on it and perhaps encourage them to share their own stories with others, too.   Lidia Schapira: Well, thank you so much, Sumit! This has been a lovely conversation.   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 wherever you listen. 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