Cancer Stories: The Art of Oncology

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

Listen to ASCO's Journal of Clinical Oncology essay "The Side Effects of Caring," by Dr. Aarti Kamat, a pediatric hematology/ oncology fellow at the University of Michigan. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Kamat, where they discuss coping with Secondary Traumatic Stress (STS) after Dr. Kamat has a triggering experience with a teenage patient. TRANSCRIPT The Side Effects of Caring: Dealing with Secondary Traumatic Stress in Oncology Narrator: The Side Effects of Caring, by Aarti Kamat, MD (10.1200/ JCO.22.00736) "I don't want to die in the hospital." I could hear the young teenager crying in the background as I told her mother on the phone that she should come in to the emergency department. She had recently been diagnosed with a relapse of her leukemia and subsequently developed a systemic fungal infection. She now had a new fever that needed to be evaluated. She had decided that her goal was to pursue all possible treatments and interventions, so although I knew the thought of going to the hospital was distressing to her, I felt that this was the safest course of action and in accordance with her overall goals of care. I gently expressed to both my patient and her mother that I did not think this would be a long admission or result in her death. I could hear the mother reiterating my comment to her daughter who continued to sob and repeat that phrase. "I don't want to die in the hospital." Eventually, my patient calmed down. I convinced her that I had no intention of sending her to the hospital to die, and she was successfully discharged home after a short admission. Despite the objectively positive medical outcome, I would still hear the patient crying in my head at random moments. Whether I was lying in bed with sleep eluding me, walking outside with my dog, or caring for other patients, I kept hearing the phantom voice repeating the phrase, "I don't want to die in the hospital." I felt strained and stressed and was sleep-deprived while trying, unsuccessfully, to ignore the crying voice that was plaguing me. As a pediatric hematology/oncology fellow, I have seen and dealt with my share of emotional situations, and this was not my first or even most difficult encounter. I do not know why this particular patient's distress triggered such an emotional response within me. I empathized with this ill and terrified teenager and felt the tension between trying to reassure her that she would be okay and advocating for a hospitalization. I know that I delivered on my promise to my patient and her mother and that the admission was short and uneventful. I had not ignored her wishes or her cries for help, and I had confirmed that she wanted to continue with treatment of both her leukemia and fungal disease. However, why did I continue to hear her voice in my head? This pattern continued for days, even as I tried distracting myself with work, a tactic that usually works for me when dealing with unwanted emotions. Eventually, I realized this strategy was not working, and I knew this could not continue. Although I do not typically feel comfortable sharing my feelings, especially negative emotions, I eventually confided in a trusted mentor who is a pediatric intensive care unit attending with an interest in physician wellness, and I hoped she would be able to lend some much-needed advice. She immediately recognized that I was experiencing secondary traumatic stress (STS) and sent me online resources and podcasts to learn more about what I was going through. She encouraged me to speak with someone I trusted in my program about my experience and so I talked with an attending who was also my mentor. She listened attentively and shared her own similar stories and experiences. Being able to have my feelings validated and acknowledged in this way by people I trusted helped me to feel less hopeless and alone. STS is being increasingly recognized in health care workers, especially in the wake of the COVID-19 pandemic. Also known as vicarious trauma, STS is related to post-traumatic stress disorder and in fact has overlapping symptoms of hypervigilance, avoidance, re-experiencing, mood disturbances, difficulty sleeping, and difficulty concentrating. Although STS can contribute to burn out, it is a distinct problem as it occurs when a person hears and responds to the trauma of another (secondary trauma) instead of their own personal trauma. STS can be triggered by hearing about the traumatic experience of a patient. In my case, hearing my patient's own duress triggered personal feelings of stress. Risk factors for STS include having a high level of empathy, the dose of exposure, isolation, less experience, younger age, and sex (more common in females). Importantly, even single events can trigger STS. The most important step in dealing with STS is recognizing the symptoms and knowing when to seek help. I was lucky that confiding in mentors and discussing my feelings with them helped my emotional healing, but it is not uncommon to need professional mental health help. The National Child Traumatic Stress Network posted a fact sheet to allow physicians to recognize STS in providers caring for children with trauma. Similarly, the American Academy of Pediatrics (AAP) published a health and wellness article in the AAP News discussing tips for providers. There are also now a variety of podcasts discussing the issue for those who wish to learn more. I no longer hear that crying voice, but I know that I am certainly at risk for redeveloping STS. This experience, while distressing, did provide a valuable lesson about the importance of mentorship and communication. The act of sharing what I was going through and being lucky enough to have two trusted mentors not only recognize and validate my emotions but also guide me and remain available when I needed encouragement was enormously valuable. As someone who does not like to express any form of perceived vulnerability, something I imagine is common in many physicians; it felt unexpectedly freeing to unburden myself. Resilience and tenacity have historically been touted as necessary personality traits in our profession, but vulnerability and sensitivity are just as important. Although these traits are not mutually exclusive, this experience has helped me embrace my vulnerable side. Although the culture of medicine does not always recognize the need for vulnerability, in my case, acknowledging these feelings has been emotionally healing and has deepened my compassion for my patients. I am so grateful for having received support from mentors who understand the need for balancing hard work and wellness, something I hope to do for others as I advance my career. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Aarti Kamat, Pediatric Oncology Fellow at CS Mott Children's Hospital at the University of Michigan. We will be discussing her Art of Oncology article, 'The Side Effects of Caring'. At the time of this recording, our guest has no disclosures. Aarti, welcome to our podcast. Dr. Aarti Kamat: Thank you so much for having me. Dr. Lidia Schapira: It's a pleasure. Tell us a little bit about your fellowship experience and storytelling. Do you read stories? Do you tell stories? How do you think about storytelling? Dr. Aarti Kamat: I've always really loved storytelling. When I was a little girl, I thought I was going to be a writer when I grew up. So it's always just kind of been a part of me. I do love reading. My friends and I, to stay close during the pandemic, have actually done virtual book clubs where we read out loud to each other. So that's been a good way to stay connected with people and also to read and hear some good stories. So that's just always been a part of me and helps me relax. Dr. Lidia Schapira: Can you share with our listeners some of the books that you've read recently that you would recommend to others? Dr. Aarti Kamat: Sure. I've been on a little bit of a Jane Austen kick recently. She's one of my favorites. So I always turn to her when I need something fun and something for my downtime. So we just finished Pride and Prejudice and just are starting Emma now. Dr. Lidia Schapira: Do you have a book club with some of your fellow fellows or some of your coworkers? Dr. Aarti Kamat: Not with my fellows, no. I do have one with my co-residents, so people I've worked with in the past. Dr. Lidia Schapira: So through this love of reading and stories, you also talk about a love of writing. Has writing been a part of your general sort of self-care portfolio, so to speak, as you tackle these very difficult years of training? Dr. Aarti Kamat: It definitely has both through journaling and through just writing silly fiction stories. It definitely helps me. If I need to get out my emotions, I can write things about myself. Otherwise, I like to write stories to entertain other people. Dr. Lidia Schapira: So let's talk a little bit about the essay that you sent and we've published in Journal of Clinical Oncology, which uses a clinical vignette as a way of introducing a very difficult topic, one that clearly shows in your narrative that you're very self-aware, but also where you share with the readers, a very particular vulnerability and a very difficult episode. Can you tell our listeners a little bit about how you live through these moments and how you are dealing with the trauma? Dr. Aarti Kamat: Sure. It's definitely hard to live with moments like this, particularly in a field like Ped Onc. I'm very lucky to have a group of supporters who are both willing and able to listen to me when I am not able to handle something myself, both family and friends and coworkers. I have very experienced mentors who have gone through similar feelings and difficult situations, were always there to guide me. So I've been very lucky in that sense. Dr. Lidia Schapira: Let's talk a little bit about the role of mentors in fellowship training. You talk about a patient triggering some trauma in yourself that you couldn't get away from that you realized was really interfering with your ability to function, if I understood your essay correctly. And you immediately found two mentors, who took you under their wing, and helped you. Tell us a little bit about this, untangle the process for us, recognizing the traumas, knowing where to turn for help, and then accepting the help. Dr. Aarti Kamat: It took me a little bit to fully recognize and give in to the fact that I needed help and that I was struggling, I knew, obviously, that I wasn't feeling myself and was having these symptoms that were unpleasant. But I think, like a lot of us do, just try to initially ignore them. And that, obviously, was not working. The one mentor, who I have always turned to who I know and has helped me through things like this in the past, I actually connected with during residency at the start of the pandemic. My program was very supportive and set up support groups, basically, for all of the residents to have one attending oversee. And she was the one who was assigned to me, and we just clicked and have stayed connected. And she's really helped guide me through fellowship and through the tough situations I've been having. So I knew I could count on her and turn to her for advice. And then in my own fellowship, I'm very close with my research mentor, and she, similarly, has guided me through fellowship. So I knew that I could already inherently trust these people. So it was very easy to turn to them once I decided that that was something I needed to do. Dr. Lidia Schapira: In your essay, you reflect a little on the culture of medicine. And, you know, you and I are not of the same generation. So I certainly remember during my training that you had to have sort of a hearty disposition, and it was all about tenacity and resilience and focus. And you talk a little bit in your essay about something that I think is so important for our readers to reflect on and hear, and that is that vulnerability and sensibility are just as important a trait of a good oncologist, pediatric, or adult. Tell us a little bit about how you discovered that. Dr. Aarti Kamat: I think it really, I discovered it since being tenacious and closed off obviously wasn't working for me. I think that culture is certainly still there, and that's what I was operating under that I needed to be strong and emotionless and not let these things get to me. Clearly that did not work and was having a negative impact on my training. So it was definitely difficult. But I realized opening up and having that vulnerable and sensitive side was important. And we deal with difficult things, our patients have a lot of difficult emotions. So kind of being aware of our own emotions can help us connect with our patients as well. Dr. Lidia Schapira: Tell me a little bit more about what you mean by embracing your vulnerable side. Dr. Aarti Kamat: I think just allowing myself to feel that vulnerability and not be ashamed or feel like there's something wrong with me or that I'm not strong enough, but rather that this is just an inherent part of me and everyone and something that I need to feel. Dr. Lidia Schapira: And let's take it a step further. And let me just say that I admire your courage for sharing your vulnerability with the community of oncology readers of JCO. What made you send this essay to us? And what drove you to put this issue of traumatic stress to the front and forward for our community of readers? Dr. Aarti Kamat: Sure. So I had actually initially just written this as a reflection piece for myself, kind of like I do, like I mentioned earlier, I do enjoy journaling and writing when I need to process something. So it was just something I had written for myself to try and just another step in the healing process. And I did share it with my mentors who then encouraged me to reach out and possibly get this published, since it is something that affects not only me. It could potentially be helpful for others. Dr. Lidia Schapira: So Aarti, let me ask you a relatively trick question here, and that is, if you were reading this as a Program Director for a Pediatric Oncology Fellowship Program, what would you do? What is the message that you would take home, and what changes would you make in your own program? Dr. Aarti Kamat: I think I would reflect on my program and see, are there supports in place for my trainees who could potentially be going through a similar experience? Is there anything that we can be doing more as a program to support trainees or not even just trainees, but anyone working in the field and really just reflect and evaluate on that? Dr. Lidia Schapira: Let's take that and think about that together a little bit more. What kind of resources or sort of wellness interventions do you think help? What have you heard from others and what has been successful for you and your fellow fellows? Dr. Aarti Kamat: So I think trying to destigmatize needing to reach out for help. So having whether that's a therapist, psychologist, psychiatrist. We do have a very good program where I am where you can just reach out, and the program helps set you up with a therapist, at least temporarily, to help work through any potential feelings you're having. They really encourage us to make time for that. I think just making it easy to find people, like a mentor or an attending to reach out to is also really important, if, you know, the professional route is not the route you want to take. So just promoting a culture of openness with people who are guiding you, not only in your career, but also in your emotional development. Dr. Lidia Schapira: So yes, I fully agree with you that creating a compassionate culture and compassion begins with self. So helping people to understand that as well is incredibly important. And one of the things I think that probably keeps you going back to work and me going back to work is that we also find the work we do very meaningful. Can you talk a little bit about the joys of practice for you? Dr. Aarti Kamat: Sure. I mean, I love my patients. I love interacting with them and getting to know each of their unique personalities and their likes and dislikes and getting to know their whole families. And really developing that relationship is very important to me and very special to me. And it's a very, I think, privileged relationship. Dr. Lidia Schapira: So what are some of the lighter moments at work both in conversation with some of your patients or with your coworkers, or even in your fictionalized writing, that help you feel that your emotional reserve tank is full? Dr. Aarti Kamat: So I love just having fun with my patients. I always make sure that at our visits, we're talking about not only the medical things, but any fun things they've done in their life, or what they've done since the last time I've seen them. I make sure I know their favorite either princess or superhero, whichever they prefer. And I like to include that when I'm talking about them with other people. The same thing with my coworkers. We're all very close. And we love laughing and joking with each other. And we really love ordering cookies and having those in clinic. So that helps the day get by as well. Dr. Lidia Schapira: And I'm wondering, do you ever read stories to your patients, to your little ones? Dr. Aarti Kamat: I haven't. But now I think I should start. Dr. Lidia Schapira: I think you should too. I have found it so interesting with so many of my patients, adult patients over time. I know who the readers are, I know what they like to read. And often that is the best icebreaker and the best way to connect during a visit even if the news we then have to tackle is not the brightest. So maybe you can try that and then write to us and tell us how it worked. Dr. Aarti Kamat: I will definitely try that. I love that. Dr. Lidia Schapira: All right. Well, it's been lovely talking with you, Aarti. Again, I thank you for sharing your vulnerability and helping us really understand how important this topic of secondary traumatic stress is for trainees. And I hope that our listeners and readers will take some good ideas home to make their programs even stronger. Dr. Aarti Kamat: Thank you. 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 wherever you listen. Be sure to subscribe so you never miss an episode. JCO Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share, and subscribe so you never miss an episode and leave a rating or review. Guest Bio Dr. Aarti Kamat is a pediatric hematology fellow at CS Mott Children's Hospital/University of Michigan.

"A Life and a Death in Haiku," by J. Russell Hoverman: a brother shares haikus and photos dear to his family around his brother's end-of-life care. TRANSCRIPT A Life and a Death in Haiku, by John John Russell Hoverman, MD, PhD (10.1200/JCO.21.02835) My brother, Jim, was diagnosed at age 73 years with colon cancer metastatic to the liver, lymph nodes, and lungs. He and his wife were avid hikers and after retirement had hoped to visit as many national parks as possible. Big Bend National Park in Texas, along the Rio Grande River bordering Mexico, at over 800,000 acres, is one of the largest and least-visited parks in the country. The park has vast expanses of desert and high mountain islands, with some peaks over 6,000 feet. We had hoped to have Jim visit us in 2020, but both cancer and COVID-19 interfered until this past spring when we were finally able to arrange a trip to the park. It had been a few years since I had last seen Jim at our most recent family wedding. When he arrived in Austin, he appeared gaunt and frail. He had lost his taste, and many foods burned his mouth. He had lost weight and was weaker. He barely felt his feet. He struggled to just get through the day. Even so, he hiked up to a promontory overlooking the Rio Grande one day and into a canyon the next and seemed to get stronger as the week went on (Figs 1 and 2). While in Big Bend, we talked about how he wanted to be remembered. Neither of our parents left tangible markers of their deaths. There were no gravesites, only scattered ashes in places without names. We discussed having a marker, a plaque, a touchstone, or maybe a bench at a favorite park, a place that could be visited by family and friends. This loss of continuity is likely a result of our culture—urbanization and the fragmentation of families. This is in contrast to The Day of the Dead (Dia de los Muertos) celebrated in Mexico and much of the American Southwest, where families decorate cemeteries and have annual gatherings to remember deceased relatives and friends. We forget, or perhaps never knew, how important this can be. As an oncologist, I saw the wide variety of ways in which people died. A few years after I finished training, I joined a practice in a small town in Oregon with a large Mennonite community. One of my first patients was a church member with metastatic ovarian cancer that was no longer responsive to treatment. She required near constant attention for pain control, and the nursing facility associated with the Mennonite Church, primarily staffed by fellow church members, was her best option. My patient knew all her caregivers, and they knew her. It was as if she was receiving terminal care for her cancer by her sisters. This may have been the first time I attended the death of a patient outside of a hospital. Given that experience, I became an ardent supporter of hospice organizations, many of which were just starting. I knew that Jim was not far from the end of his life and that he wanted to be able to make his own choices, even to the point of getting it over with. We both also knew the impact of sudden, unforeseen, untimely deaths in our own family. I had hoped that Jim could be comfortable and able to participate with us until the very end. This most likely meant involving hospice care. By summer, less than a year after his diagnosis, chemotherapy no longer controlled his disease, and there were no treatment options available. His oncologist offered a menu of possible treatments including radionuclide embolization of two liver lesions and radiation treatment of lung lesions. As Jim's discomfort was primarily in the region of his largest liver lesion, he and his wife decided to pursue the liver embolization for pain relief, but while recovering from his chemotherapy, Jim lost more weight and became weaker. At the time of the scheduled procedure, the interventional radiologist discussed his concern that Jim's change in status would make the procedure highly risky and could result in hospitalization and death. He allowed that if Jim wanted to swing for the fences, they could proceed but he did not recommend it. More than anything, Jim wanted to be in control of his faculties, and the risks were too great. He and his family decided to return home and enroll in hospice care. Jim was an English major in college, writing his senior thesis on the poet Wordsworth and taught high school English for 17 years. Throughout his career, he wrote poetry and was especially fond of the haiku. Haiku is a centuries old Japanese poetry format composed of 17 syllables in three unrhymed lines with the first line of five syllables, seven in the second, and five in the third. The subject is often an observation (usually of nature) or an event that is tied to or elicits an emotion. Over the years, a haiku would come to Jim, often unbidden, stimulated by a perception or an event. While in Big Bend, we discussed adding a haiku to whatever memorial he considered. Once the decision was made to enroll in hospice care, Jim chose, from his life experiences, 17 haikus to post on social media, one daily beginning August 1. A few are included here: Day 1: The Waterhole Like the circumspect Gazelle, I have waited long before drinking deep. Day 2: At Field's Pond At Field's Pond today a rude clique of frogs gave me the silent treatment. Day 7: Mt. Sugarloaf On Mount Sugarloaf, we met a youthful choir of pines dressed in white robes. By day 9, Jim was too weak to post his work. Jim's wife continued his mission and reported the responses to him each day. Day 11: Ripples From shore a teacher casts a stone. Endless ripples roll and roll away. Day 13: The Chase Like a leaf that runs from an October wind, the cat escapes my son. Jim died on the morning of day 16, shortly after this haiku was posted. New Year's Eve Tonight, New Year's Eve, is so still and cold, the trees crack like popping corks. At the end of life, it may not be clear who is providing the narrative for care. It may be the physician offering treatment choices, another line of therapy, a new drug, a different modality of therapy, palliative care, or hospice care. The patient may never gain control of the narrative. Aggressive treatment may lead to hospitalization and a lonely death in the Intensive Care Unit. Jim was empowered to take control of the narrative by opting for hospice care and posting his haikus. He no longer posted details to his social network about his doctor visits, daily physical challenges, and symptoms; it was about sharing his life and the wonder he found in it. The changes in responses on his social network were profound as it became less about expressing empathy and more about remembering the person he was. Just as Jim's visit to Big Bend and the surrounding wildness and beauty of the park energized him, Jim's satisfaction with the responses made him more comfortable, looking forward to each day's reaction and, perhaps, making it easier for him to go. A patient's journey with cancer is a story told by family and friends. The satisfaction with the story depends on how the story ends. The physician's role in the story begins when the cancer is evaluated and a treatment strategy proposed and provided. At a point in the care of everyone with incurable disease, the cancer is no longer the main issue and the patient and family take center stage. When the physician is unable to cure or prolong life, his or her role becomes that of a guide attempting to lead the patient and family to an ending that comforts all. This requires an understanding of the patient's narrative and depends on accurate information about how the narrative will be affected by treatment choices. The combination of hospice care with the assurance of dying at home surrounded by family coupled with the ability to connect with his extended family and friends through social media was truly transformative for Jim and for me. Jim's control over the narrative and the direction that action gave to the care team made it easier to allow his death. Our role was to comfort and support and be present. There was no regret and no guilt with how things went. I could not have hoped for more. A few months after Jim's death, his family and friends gathered to celebrate his life. We met in a grove of trees in a protected forested area where he often hiked. The centerpiece of the gathering was a bench marked by a plaque with his name on it. There was also a plaque with his favorite haiku. Dawn on the Appalachian Trail Light slips in along the eastern edge. I am still, startled by beauty. Jim's ashes were scatted nearby. Always the teacher, the ripples roll and roll …. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. John Russell Hoverman, now retired, formerly responsible for the development of value-based delivery programs for Texas Oncology and US oncology. Dr. Hoverman also has a PhD in philosophy. We'll be discussing his Art of Oncology article, 'A Life and a Death in Haiku'. At the time of this recording, our guest has no disclosures. Russ, welcome to our podcast. Dr. John Russell Hoverman: Thanks for asking me. Dr. Lidia Schapira: So let me start by asking a personal question. How did philosophy lead you to medicine and cancer care? Dr. John Russell Hoverman: I always thought I wanted to be a doctor. I had a family practitioner who was an inspiration. I think from sophomore in high school, I knew I wanted to be a doctor. But I always asked other questions. So when I got to college, I had a chance to broaden my horizons, I guess. And when it came time to choose a major, because I took some elective courses as a freshman that were required, when it became time to choose a major, I chose philosophy. My family doctor said, 'You know, that's great. You should have some other discipline. Some of the humanities is probably as good as anything. And it won't hurt you if you're going to be a physician.' So I majored in philosophy and minored in biology. Dr. Lidia Schapira: It's interesting. I had a different experience. I, too, wanted to study philosophy, and the advice I received was, well, study medicine first and philosophize later. So I'm so glad that you actually studied philosophy formally. And tell us a little bit about how you have incorporated some of the thought processes and frameworks for approaching important topics that you learned as a philosopher into your medical practice and all of the amazing work that you've done. Dr. John Russell Hoverman: Medicine is a humanistic enterprise. So you are interested in people or you're interested in what they think. But it's also an evidence-based enterprise. And philosophy is all about evidence, especially logic. That's been one of my favorite topics. I've written about that more than once about clinical trials. And actually, that may be a paper I'll do shortly is about the logic behind the mRNA vaccines. The science is spectacular, but it wouldn't be anything without the logic of clinical trials so that when we look at providing value, which should be an ethical obligation for physicians, logic comes in handy to determine whether a structure of a clinical trial actually gets you the answer that you want. And what you want is to know what is the highest value for your patients and to be able to measure that and be able to talk about it. And then the other part of that is end of life care, which, again, is an ethical enterprise. And it has to do with getting information and giving the right information to your patients in what you're obligated to give. As you search for that, there's more and more information that probably is needed. So that's enough. And I still love the science. The science is wonderful, but it has to be translated. Dr. Lidia Schapira: So help me think through how we incorporate storytelling and narrative into your argument that this too has value as we think about our roles as physicians, especially when we're thinking about end of life care. Dr. John Russell Hoverman: I think you've had the same experience, I think, that we all in our practices have stories. My brother's story is just one of them. And you think about how your view towards having conversations with patients is colored by the patients that you've had and the stories that they told. I had a patient who had lung cancer in the rural area in Oregon and wanted to send them to the medical center. They said, 'No, I lived on a farm all my life. I know exactly what life and death is, and I want to be with my family.' So we've been impressed by the interactions patients have with their families and with their physicians as to how things could end up well. Dr. Lidia Schapira: In your essay, you used an expression that I found very powerful. And that is that your brother Jim, whose story you tell, ultimately had control of his narrative. Tell us a little bit about how that locus of control is negotiated in the relationship between the patient and the cancer clinicians. Dr. John Russell Hoverman: Again, there are other stories to tell. So we've had patients who wanted to be in control but didn't know how to do it and actually weren't sure what they wanted. One elderly woman talked to her family practitioner, her family physician about assisted suicide. So she was dying, I think of metastatic colon cancer. She had two daughters, and one was halfway around the world, and she didn't want to bother that daughter. So she wanted to slip off quietly. And when we've talked to her about it, we knew that her daughter would be honored to be there. And in fact, that was the case. So we learn from stories to maybe probe a little bit more than we ordinarily would. If something doesn't seem to be going right, maybe there's something we can address. I think we all have instances when that's happened. Dr. Lidia Schapira: In your essay, you also talk about the importance of storytelling and the control of narrative as a way of helping those who love the person who's dying and how that can ease the pain of bereavement. And in your particular case, when you tell Jim's story, you say there was no regret, no guilt, which is a beautiful sentiment. As physicians, we often see that there is regret and there is guilt with how families approach the last few weeks of life of a loved one. Can you tell us a little bit more about this, no regret, no guilt concept? Dr. John Russell Hoverman: We see guilt often when things don't turn out the way families think they should. And probably the thing that we see most often is the patient dies in the hospital, and they're not at home. And what we do see with hospice care is that they don't feel as much guilt. And I think what happened with Jim, maybe taking that to another level, by being proactive about the message. And the question is, not everybody can write haikus. But what else can you do? Can you have somebody give a piece of a story? Or can you publish a photograph? Or what else can you do to mark that life as something that was worthwhile, and then everybody gets on board with that. That becomes more important than pain control or being awake again. I think we're just exploring that. For me, it was a revelation to see that. Dr. Lidia Schapira: Now, let's turn to your essay. In the final moments of this interview, you bring life's experience as a cancer clinician, as a deep thinker. And you chose to tell the story to your colleagues through publication and JCO. What is the message in your essay for listeners and readers. Dr. John Russell Hoverman: The message, I think, is the message that I got. To my mind, the story wrote itself. It was there just to record. Then the message to me was that this is how things could be, understanding the patient's, and I'll use that word 'mindset', so that we can tailor his care to that mindset, and in fact allow him to have as much say about how that care is tailored as possible. Dr. Lidia Schapira: Tell us a little bit about Jim, your brother. Dr. John Russell Hoverman: Well, he's a middle child. So we had three boys. And of course, you always think that the older one always beats up on the younger ones. Jim started to wrestle when he was in junior high school. That changed our relationship. So it was no longer a power relationship. But when he went to college, he majored in English, and I majored in philosophy. And we both were interested in the same things. Interested in how the world works, how the world got to be where it was, but Jim interrogated nature with poetry and literature, and I interrogated nature with science and philosophy. And we've had some interesting discussions, but we were not far off from the ultimate picture. But I would talk about something about ethics, and he would have a literature reference and probably would sum up what I would do in five pages in four sentences. So it continued to be that way. We were both always interested in the outside, interested in hiking. As you can tell, I'm interested in taking photographs. So there's always a sense of being in the world that we both had. And Jim did it in his way, and I did my way. But we were never really that different, I think, in how we looked at things. Dr. Lidia Schapira: If I may, I'd like to ask a personal question. And, of course, you don't have to answer, and that is, how are you doing in your grief over Jim's loss? Dr. John Russell Hoverman: Well, it was good that it ended the way it was. It was bracing to watch your brother die. I'm not sure that's the best word. But it was clearly emotional. But it helps if it happened the best way it could. And he was in control. It's not something that got away from us. And again, we've talked about sudden deaths and how those are so unsatisfying because you can never really say anything. And it wasn't that, which I know was good for him and his family. So it's not just me; his sons and his wife also appreciated the chance to have Jim towards the end of his life. Dr. Lidia Schapira: Well, the essay is really moving. It's instructive. It's personal. And on behalf of the readers of JCO, I thank you for sending it to us. It's been a real pleasure chatting with you today, Russ, and I want to express on behalf of all of us, our condolences for your loss, and our admiration for your work. Thank you. Dr. John Russell Hoverman: Thanks, and I appreciate working with you. I think it's much better than it might have been otherwise. Dr. Lidia Schapira: Before we conclude this interview, Russ, I wonder if you can read one of your favorite haikus for us. Dr. John Russell Hoverman: Sure. It's called 'The Hospital Bed', and it relates to a story that Jim's wife told me and I imagined: Restless and moaning His wife lies down beside him He quiets and sleeps That's it. Dr. Lidia Schapira: Thank you so much. So until next time, thank you for listening to JCO's Cancer Stories: Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.