Cancer Stories: The Art of Oncology

Embark on an intimate journey with heartfelt narratives, poignant reflections, and thoughtful dialogues, hosted by Dr. Mikkael Sekeres. The award-winning podcast JCO Cancer Stories: The Art of Oncology podcast unveils the hidden emotions, resilient strength and intense experiences faced by those providing medical support, caring for, and living with cancer.

Writing a Medical Memoir: Lessons From a Long, Steep Road 04/22/2025

Writing a Medical Memoir: Lessons From a Long, Steep Road Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by David Marks, consultant at University Hospitals Bristol NHS Foundation Trust. The article is followed by an interview with Marks and host Dr. Mikkael Sekeres. Marks shares his challenging journey of writing a memoir describing his patients and career. Transcript Narrator: , by David Marks, PhD, MBBS, FRACP, FRCPath The purpose of this essay is to take hematologist/oncologist readers of the Journal on my challenging journey of trying to write a memoir describing my patients and career. This piece is not just for those who might wish to write a book, it also can be generalized to other creative writing such as short stories or other narrative pieces intended for publication. My experience is that many of my colleagues have considered doing this but do not know where to start and that many embarking on this journey lack the self-confidence most writers require. I also describe other issues that unexpectably arose, particularly my struggle to get the book to its intended target audience, and of writing about myself in such a personal way. In my book of semifiction, I tell the stories of my patients with leukemia, but also describe what it is like to be a physician looking after young patients with curable but life-threatening diseases. I recount my medical career and working in the United Kingdom's National Health Service (NHS), a very different health system to the one I experienced when I worked in Philadelphia during the early 1990s. Telling the stories of my patients with leukemia (and my story) was my main motivation but I also wanted to challenge my creative writing skills in a longer format. As a young person, I wrote essays and some poetry. As a hemato-oncologist, the major outputs of my writing have been over 300 scientific papers and a 230-page PhD thesis. The discipline required to write papers does help with writing a nonfiction book, and as with writing scientific papers, the first step is having a novel idea. I admired the work of Siddhartha Mukherjee (“The Emperor of all Maladies”) and Mikkael Sekeres (“When Blood Breaks Down”), but I wanted to write about my patients and their effect upon me from a more personal perspective. I obtained written consent from the patients I wrote about; nearly all of them were happy for me to use their first name; they trusted me to tell their stories. All of the patients' stories have a substantial basis in fact. I also wrote about colleagues and other people I encountered professionally, but those parts were semifiction. Names, places, times, and details of events were changed to preserve anonymity. For example, one subchapter titled “A tale of two managers” comprises events that relate to a number of interactions with NHS medical managers over 30 years. The managers I wrote about represent a combination of many people, but it would not have been possible to write this while still working at my hospital. I had wanted to write a book for years but like most transplanters never had the sustained free time to jot down more than a few ideas. In the second UK lockdown of 2020 when we were only allowed to go out to work and for an hour of exercise, we all had more time on our hands. A columnist in the Guardian said that people should have a “lockdown achievement”; this would be mine. This is how I went about it. I knew enough about writing to know that I could not just go and write a book. I considered a university writing degree, but they were all online: There was not the nourishment of meeting and interacting with fellow writers. I joined two virtual writing groups and got some private sessions with the group's leader. We had to write something every week, submitted on time, and open for discussion. In one writing group, there was a no negative criticism rule, which I found frustrating, as I knew my writing was not good enough and that I needed to improve. I had no shortage of ideas, stories to tell, and patients and anecdotes to write about. I have a pretty good memory for key conversations with patients but learned that I did not have to slavishly stick to what was said. I also wrote about myself: my emotions and the obstacles I encountered. To understand how I guided my patients' journeys, my readers would need to understand me and my background. I carried a notebook around and constantly wrote down ideas, interesting events, and phrases. Every chapter underwent several drafts and even then much was totally discarded. I was disciplined and tried to write something every day, realizing that if I did not make progress, I might give up. Most days the words flowed; refining and editing what I wrote was the difficult part. Very different to Graham Greene in Antibes. He would go to his local café, write 200-400 words, then stop work for the day and have his first glass of wine with lunch before an afternoon siesta. How would I tell the story? My story was chronological (in the main), but I felt no need for the patient stories to be strictly in time order. The stories had titles and I did not avoid spoilers. “Too late” is the story of a patient with acute promyelocytic leukemia who died before she could receive specialist medical attention. This had a devastating effect on the GP who saw her that morning. So, there were plenty of patient stories to tell, but I needed to learn the craft of writing. Visual description of scenes, plots, and giving hints of what is to come—I had to learn all these techniques. Everything I wrote was looked at at least once by my mentor and beta readers, but I also submitted my work for professional review by an experienced editor at Cornerstones. This person saw merit in my work but said that the stories about myself would only interest readers if I was “somebody like David Attenborough.” Other readers said the stories about me were the most interesting parts. So far, I have focused on the mechanics and logistics of writing, but there is more to it than that. My oncology colleague Sam Guglani, who has successfully published in the medical area, was very useful. I asked him how his second book was progressing. “Not very well.” “Why?” “It takes a lot of time and I'm not very confident.” Sam writes such lovely prose; Histories was positively reviewed yet even he still has self-doubt. Hematologists/oncologists, transplanters, and chimeric antigen receptor T cell physicians are often confident people. Most of the time we know what to do clinically, and when we give medical advice, we are secure in our knowledge. This is because we have undergone prolonged training in the areas we practice in and possess the scientific basis for our decisions. This is not the case when doctors take on creative writing. Few of us have training; it is out of our comfort zone. Nearly all new writers are insecure, in a constant state of worry that our outpourings are not “good enough,” that “nobody will like it.” Even high-quality memoirs may be hard to get published. I did not enter this thinking I would fail, and I have received feedback that I “can write.” But when you look at people who can really write, who have already been published, and earn a living from writing, you think that you will never be as good. Does this matter for a medical memoir? Yes, it does. I came to realize to improve it is important to surround yourself with people who read a lot and preferably with some who are well-regarded published writers. These people should offer unrestrained feedback, and you should take note. However, I learned you do not need to do everything they say—it is not like responding to the reviewers of scientific papers—your book should retain your individual stamp and cover what you think is important. I found there are risks in writing a memoir. Private matters become public knowledge to your family and friends. In a hospital you have lots of work relationships, not all of which are perfect. It can be a tense environment; you often have to keep quiet. Writing about them in a book, even if colleagues and events are disguised or anonymized, runs the risk of colleagues recognizing themselves and not being happy with how they are portrayed. Writing a book's first draft is hard; getting it to its final draft even harder but perhaps not harder than writing a major paper for JCO or Blood. (For me writing the discussion section of a paper was the most difficult task). However, finding an agent is perhaps the hardest of all. Every agent has their own laborious submission system. About a third of agents do not respond at all; they may not even read your book. Another third may send you a response (after up to 3 months) saying that the book is “not for me.” Three agents told me that their own experiences with cancer made it impossible for them to read the book while others said it was a worthwhile project but it was not their area of interest. That encouraged me. It required resilience to get Life Blood published. I did not have the skills to self-publish, but I found a publisher that would accept the book, provided I contributed to the costs of publishing. This was not easy either because my book did not have as much final editing as a conventional publisher provides. Getting the book to its target audience was another major challenge. A number of hematologic journals agreed to consider reviews of the book, and my colleagues were generous in offering to review it. However, I wanted my book to be read by people with cancer and their families: nearly all of us at some point in our lives. A digital marketing consultant helped me publicize the book on social media and construct a user-friendly Web site. I hope this reflection offers some encouragement for budding authors who are hematologists/oncologists. However, as all writers reading this will know, writing is a lonely pursuit; it is something you do on your own for long periods and you cannot be sure your work will ever see the light of day. One of the main ingredients is persistence; this is probably the main difference between people who finish books and those who do not. Of course there may be benefits to physicians from writing per se, even if it is never published, although most hematologists/oncologists I know are quite goal oriented. Was it all worthwhile? Yes, I think so. Writing about my career stirred up lots of memories and has been quite cathartic. Physicians often feel they have insufficient time to reflect on their practice. It made me reflect on my achievements and what I could have done better. Could I have worked harder for my patients (rarely) or thought of therapeutic interventions earlier (sometimes)? What about my professional relationships? In my efforts to do the best for my patients, was I sometimes too impatient (yes)? I hope the book inspires young people contemplating a career in hematology/oncology but also gives them a realistic idea of the commitment it requires; even relatively successful doctors encounter adversity. To all my hematologic/oncologic and transplant colleagues worldwide, if you think you have a book in you, find the time and the intellectual space, start writing but also get help. In telling the story of your patients you honor them; it is a very satisfying thing to do but there are risks. I have had lots of feedback from friends and colleagues, the great majority of it positive, but when my book was published, I prepared myself for more critical reviews. I learned a lot from writing Life Blood; at the end, I was a stronger, more secure writer and hematologist/oncologist, more confident that the story of my patients and career was worth telling and relevant to a wider audience. Dr. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. And what a pleasure it is today to be joined by Professor David Marks, a consultant at University Hospitals Bristol NHS Foundation Trust in the UK. In this episode, we will be discussing his Art of Oncology article, "Writing a Medical Memoir: Lessons from a Long, Steep Road." Our guest’s disclosures will be linked in the transcript. David, welcome to our podcast, and thanks so much for joining us. Professor David Marks: Thank you very much for inviting me. It's a real honor. Dr. Mikkael Sekeres: David, I really enjoyed your piece. We've never had a "how to write a memoir" sort of piece in Art of Oncology, so it was a great opportunity. And, you know, I think 30 years ago, it was extraordinarily rare to have a doctor who also was a writer. It's become more common, and as we've grown, still among our elite core of doctor-writers, we've also birthed some folks who actually write in long form—actual books, like you did. Professor David Marks: I'd sort of become aware that I wasn't the only person doing this, that there were lots of people who liked creative writing, but they had difficulties sort of turning that into a product. This was the reason for sort of writing this. I'm hardly an expert; I've only written one book, but I sort of hope that my experiences might encourage others. Dr. Mikkael Sekeres: I think it's a terrific idea. And before we get started about the book, I, of course, know you because you and I run in some of the same academic circles, but I wonder if you could tell our listeners a little bit about yourself. Professor David Marks: So, I'm Australian. That's where I did my internal medical and hematology training in Melbourne. And then I did a PhD to do with acute lymphoblastic leukemia at the University of Melbourne. I then moved to London for three years to do some specialist training in bone marrow transplantation and some lab work, before spending three years in Philadelphia, where I did transplant, leukemia, and some more lab work. And then, mainly for family reasons, moved back to the UK to take up a post in Bristol. I have retired from patient-facing practice now, although I still give medical advice, and I'm doing some consulting for a CAR T-cell company based in LA. Dr. Mikkael Sekeres: Great. And can I ask you, what drew you to focus on treating people with leukemia and doing research in that area? Professor David Marks: I think leukemia is just such a compelling disease. From really the first patient I ever looked after, there was a person who is both life-threateningly ill, has had their life turned upside down. Yet, there is—increasingly now—there's an opportunity to cure them or, at the very least, prolong their life significantly. And also, its sort of proximity to scientific research—that was the attraction for me. Dr. Mikkael Sekeres: There is something compelling about cancer stories in general. I think we talk about the privilege of doing what we do, and I think part of that is being invited into people's lives at probably one of the most dramatic moments of those lives. We're, of course, unwelcome visitors; nobody wants a diagnosis of cancer and having to have that initial conversation with an oncologist. But I wonder if, as doctors and as writers, we feel compelled to share that story and really celebrate what our patients are going through. Professor David Marks: So, that absolutely is one of my main motivations. I thought- there aren't, to my mind, all that many books out there that sort of try and tell things from both the patient with leukemia's point of view and the doctors looking after them. And I thought that their stories should be told. It's such a dramatic and frightening time, but I think the struggles that people go through in dealing with this—I think this is something I sort of felt people should have the opportunity to learn about. Dr. Mikkael Sekeres: Yeah, we're really honoring our patients, aren't we? Professor David Marks: Absolutely. When you think of the patients you've looked after, their courage, their steadfastness in dealing with things, of just battling on when they're not well and they're scared of things like dying—you've just got to admire that. Dr. Mikkael Sekeres: Yeah, yeah. David, you have a tremendous number of academic publications and have been transformative in how we treat people who have acute lymphoblastic leukemia. How did you first get into writing narrative medicine? Professor David Marks: Although I have written quite a lot scientifically, although that is incredibly different to creative writing, some of the same sort of care that one needs with a scientific paper, you do need for creative writing. I always liked English at school, and, you know, even as a teenager, I wrote some, you know, some poetry; it frankly wasn't very good, but I had a go. I came to a point where I wanted to write about my patients and a bit about my career. I had trouble finding the time; I had trouble finding the sort of intellectual space. But then COVID and lockdown occurred, and, you know, all of us had a lot more time; you know, we weren't even allowed to leave the house apart from working. So, at that point, I started writing. Prior to that, though, I had sort of kept a notebook, a quite big notebook, about stories I wanted to tell and events in my career and life that I wanted to tell. So there was something of a starting point there to go from. But when I first started writing, I realized that I just didn't know enough about writing. I needed to learn the craft of writing, and so I also joined a couple of writing groups. Dr. Mikkael Sekeres: That's—I find that absolutely fascinating. I think there are a lot of people who want to write, and there are some who have the confidence to go ahead and start writing, right? Whether they know the craft or not. And there are others who pause and say, "Wait a second, I've done a lot of reading, I've done a lot of academic writing, but I'm not sure I know how to do this in a creative way." So, what was your first step? Professor David Marks: I had sort of notes on these stories I wanted to write, and I did just try and write the sort of two- to five-page story, but I then sort of realized that it was just—it just wasn't very good. And I needed to learn really all the basic things that writers need, like developing a plot, like giving hints of what's to come, using visual description. Those things are obviously completely different to scientific writing, and I—it was a bit like going back to school, really. Dr. Mikkael Sekeres: And how did you even find writing groups that were at the right level for someone who was starting on this journey? Professor David Marks: So, I got a recommendation of a sort of local group in Bristol and a very established sort of mentor who has actually mentored me, Alison Powell. But it is difficult because some people on the group had written and published a couple of books; they were way ahead of me. And some people were just really starting out. But there were enough people at my level to give me sort of useful criticism and feedback. But yes, finding the right writing group where there's a free interchange of ideas—that is difficult. And, of course, my—what I was writing about was pretty much different to what everybody else was writing about. Dr. Mikkael Sekeres: So, you joined a writing group that wasn't specific to people in healthcare? Professor David Marks: There was something at my hospital; it was a quite informal group that I joined, and that had a whole number of healthcare professionals, but that didn't keep going. So, I joined a group that was really a mixture of people writing memoirs and also some people writing fiction. And I actually found a lot of the things that people writing... /episode/index/show/aoopodcast/id/36226145

Tamales: Celebrating a Mexican Christmas Tradition 04/10/2025

Tamales: Celebrating a Mexican Christmas Tradition Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by Megan Dupuis, an Assistant Professor of Hematology and Oncology at Vanderbilt University Medical Center. The article is followed by an interview with Dupuis and host Dr. Mikkael Sekeres. Dupuis reflects on how patients invite their doctors into their culture and their world- and how this solidified her choice to be an oncologist. TRANSCRIPT Narrator: , by Megan Dupuis, MD, PhDI do not know if you know this, but tamales are an important—nay, critical—part of the Mexican Christmas tradition. Before I moved to Texas, I certainly did not know that. I did not know that the simple tamal, made of masa flour and fillings and steamed in a corn husk, is as essential to the holiday season as music and lights. Whole think pieces have been written in The Atlantic about it, for God’s sake. But, I did not know that. A total gringa, I had grown up in upstate NY. We had the middle-class American version of Christmas traditions—music, snow, Santa, and a Honey Baked Ham that mom ordered 2 weeks before the holiday. I had never tried a homemade tamal until I moved to Texas. We had relocated because I was starting a fellowship in hematology/oncology. A central part of our training was the privilege of working at the county hospital cancer clinic. Because we were the safety-net hospital, our patients with cancer were often under- or uninsured, frequently had financial difficulty, and were almost always immigrants, documented or otherwise. In a typical clinic day, over 90% of my patients spoke Spanish; one or two spoke Vietnamese; and typically, none spoke English. From meeting my very first patient in clinic, I knew this was where I needed to be. Have you ever been unsure of a decision until you have been allowed to marinate in it? That is how I felt about cancer care; I had not been sure that my path was right until I started in the county oncology clinic. I loved absorbing the details of my patients’ lives and the cultures that centered them: that Cuban Spanish is not Mexican Spanish and is not Puerto Rican Spanish; that many of my patients lived in multigenerational homes, with abuelos and tios and nietos all mixed together; and that most of them continued to work full-time jobs while battling cancer. They had hobbies they pursued with passion and lived and died by their children’s accomplishments. I learned these details in the spaces between diagnosis and treatment, in the steady pattern woven in between the staccato visits for chemotherapy, scans, pain control, progression, and hospice. In one of those in-betweens, my patient Cristina told me about tamales. She had faced metastatic breast cancer for many years. She was an impeccable dresser, with matching velour tracksuits or nice slacks with kitten heels or a dress that nipped in at the waist and flared past her knees. Absolutely bald from treatment, she would make her hairlessness look like high fashion rather than alopecia foisted upon her. Her makeup was always painstakingly done and made her look 10 years younger than her youthful middle age. At one visit in August, she came to clinic in her pajamas and my heart sank. This was a familiar pattern to me by now; I had taken care of her for 2 years, and pajamas were my canary in the coal mine of progressing cancer. So on that sunny day, I asked Cristina what her goals would be for the coming months. The cancer had circumvented many of her chemotherapy options, and I only had a few left. “Doctora D, I know my time is limited…” she started in Spanish, with my interpreter by my side translating, “but I would really like to make it to Christmas. My family is coming from Mexico.” “Oh that’s lovely. Do you have any special Christmas plans?” I ventured, wanting to understand what her holidays look like. “Plans? Doctora D, of course we are making tamales!” She laughed, as though we were both in on a joke. “Tamales? At Christmas?” I asked, signaling her to go on. “Yes yes yes, every year we make hundreds and hundreds of tamales, and we sell them! And we use the money to buy gifts for the kids, and we eat them ourselves too. It is tradicio´ n, Doctora D.” She underlined tradicio´ n with her voice, emphasizing the criticality of this piece of information. “Okay,” I said, pausing to think—December was only four months away. “I will start a different chemotherapy, and we will try to get you to Christmas to make your tamales.” Cristina nodded, and the plan was made. Later that evening, I asked one of my cofellows, a Houston native, about tamales. He shared that these treats are an enormous part of the Houston Christmas tradition, and if I had any sense, I would only purchase them from an abuela out of the trunk of a car. This was the only way to get the best homemade ones. “The ones from restaurants,” he informed me, “are crap.” So summer bled into fall, and fall became what passes for winter in Texas. On 1 day in the middle of December, Cristina came into clinic, dressed in a colorful sweater, flowing white pants, black boots, and topped off with Barbie-pink lipstick. “Cristina!” I exclaimed, a bit confused. “You don’t have an appointment with me today, do you?” She grinned at me and held up a plastic grocery bag with a knot in the handles, displaying it like a prize. “Tamales, Doctora D. I brought you some tamales so you can join our Christmas tradition.” I felt the sting of tears, overwhelmed with gratitude at 11:30 in a busy county clinic. I thanked her profusely for my gift. When I brought them home that night, my husband and I savored them slowly, enjoying them like you would any exquisite dish off a tasting menu. Sometimes, people think that oncologists are ghouls. They only see the Cristinas when they are in their pajamas and wonder why would any doctor ever give her more treatment? My answer is because I also got to see her thriving joyfully in track suits and lipstick, because I got to spend countless in-betweens with her, and because I helped get her to the Christmas tradiciones I only knew about because of her. And in return, she gave of herself so easily, sharing her life, her passion, her struggles, and her fears with me. Caring for Cristina helped me marinate in the decision to become an oncologist and know that it was the right one. And if you are wondering—yes. Now tamales are a Christmas tradicio´n in the Dupuis household, too. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm a professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. What a pleasure it is today to be joined by Dr. Megan Dupuis from Vanderbilt University Medical Center. She is Assistant Professor of Hematology and Oncology and Associate Program Director for the Fellowship program. In this episode, we will be discussing her Art of Oncology article, "Tamales." Our guest's disclosures will be linked in the transcript. Both she and I have talked beforehand and agreed to refer to each other by first names. Megan, welcome to our podcast, and thank you for joining us. Megan Dupuis: Oh, thanks so much for having me, Mikkael. I'm excited to be here. Mikkael Sekeres: I absolutely loved your piece, "Tamales," as did our reviewers. It really did resonate with all of us and was beautifully and artfully written. I'm wondering if we could just start—tell us about yourself. Where are you from, and where did you do your training? Megan Dupuis: Sure. I'm originally from upstate New York. I grew up outside of Albany and then moved for college to Buffalo, New York. So I consider Buffalo home. Big Buffalo Bills fan. And I spent undergrad, medical school, and my PhD in tumor immunology at the University of Buffalo. My husband agreed to stick with me in Buffalo for all twelve years if we moved out of the cold weather after we were done. And so that played some factor in my choice of residency program. I was lucky enough to go to Duke for residency—internal medicine residency—and then went to MD Anderson for fellowship training. And then after Anderson, I moved up to Nashville, Tennessee, where I've been at Vanderbilt for almost four years now. Mikkael Sekeres: That's fantastic. Well, I have to say, your Bills have outperformed my Pittsburgh Steelers the past few years, but I think I think we have a chance this coming year. Megan Dupuis: Yeah. Yep. Yep. I saw they were thinking about signing Aaron Rodgers, so we'll see how that goes. Mikkael Sekeres: Yeah, not going to talk about that in this episode. So, I'm curious about your story as a writer. How long have you been writing narrative pieces? Megan Dupuis: I have always been a writer—noodled around with writing and poetry, even in college. But it was when I started doing my medicine training at Duke that I started to more intentionally start writing about my experiences, about patients, things that I saw, things that weighed either heavily on me or made a difference. So when I was at Duke, there was a narrative medicine writing workshop—it was a weekend workshop—that I felt like changed the trajectory of what my interest is in writing. And I wrote a piece at that time that was then sort of critiqued by colleagues and friends and kicked off my writing experience. And I've been writing ever since then. We formed a narrative medicine program at Duke out of this weekend workshop experience. And I carried that through to MD Anderson when I was a fellow. And then when I joined at Vanderbilt, I asked around and said, "Hey, is there a narrative medicine program at Vanderbilt?" And somebody pointed me in the direction of a colleague, Chase Webber, who's in internal medicine, and they said, "Hey, he's been thinking about putting together a medical humanities program but needs a co-conspirator, if you will." And so it was perfect timing, and he and I got together and started a Medical Humanities Certificate Program at Vanderbilt about four years ago. And so- Mikkael Sekeres: Oh, wow. Megan Dupuis: Yeah. So I've been doing this work professionally, but also personally. You know, one of the things that I have been doing for a long time is anytime there's an experience that I have that I think, “Gosh, I should write about this later,” I either dictate it into my phone, “write about this later,” or I write a little message to myself, “Make sure that you remember this experience and document it later.” And I keep a little notebook in my pocket specifically to do that. Mikkael Sekeres: Well, it's really a fabulous, updated use of technology compared to when William Carlos Williams used to scribble lines of poetry on his prescription pad and put it in his rolltop desk. Megan Dupuis: Although I will admit, you know, I don't think I'm much different. I still do prefer often the little leather notebook in the pocket to dictating. It'll often be when I'm in the car driving home from a clinic day or whatever, and I'll go, “Oh, I have to write about this, and I can't forget.” And I'll make myself a little digital reminder if I have to. But I still do keep the leather notebook as well for the more traditional type of writing experience. Mikkael Sekeres: I'm curious about what triggers you to dictate something or to scribble something down. Megan Dupuis: I think anything that gives me an emotional response, you know, anything that really says, “That was a little bit outside the normal clinical encounter for me.” Something that strikes me as moving, meaningful—and it doesn't have to be sad. I think a lot of novice writers about medical writing think you have to write only the tragic or the sad stories. But as often as not, it'll be something incredibly funny or poignant that a patient said in clinic that will make me go, “Ah, I have to make sure I remember that for later.” I think even surprise, you know? I think all of us can be surprised in a clinical encounter. Something a patient says or something a spouse will reflect on will make me sit back and say, “Hmm, that's not what I expected them to say. I should dive into why I'm surprised by that.” Mikkael Sekeres: It's a great notion as a starting point: an emotional connection, a moment of surprise. And that it doesn't have to be sad, right? It can be- sometimes our patients are incredibly inspirational and have great insights. It's one of the marvelous things about the career we've chosen is that we get to learn from people from such a variety of backgrounds. Megan Dupuis: That's it. It's a privilege every day to be invited into people's most personal experiences, and not just the medical experience. You know, I say to my patients, “I think this cancer diagnosis is in some ways the least interesting thing about you. It's not something you pick. It's not a hobby you cultivate. It's not your family life. It's a thing that's happened to you.” And so I really like to dive into: Who are these people? What makes them tick? What's important to them? My infusion nurses will say, "Oh, Dr. D, we love logging in and reading your social histories," because, yeah, I'll get the tobacco and alcohol history, or what have you. But I have a little dot phrase that I use for every new patient. It takes maybe the first five or six minutes of a visit, not long. But it's: Who are you? What's your preferred name? Who are your people? How far do you live from the clinic? What did you used to do for work if you're retired? If you're not retired, what do you do now? What are the names of your pets? What do you like to do in your spare time? What are you most proud of? So those are things that I ask at every new patient encounter. And I think it lays the foundation to understand who's this three-dimensional human being across from me, right? What were they like before this diagnosis changed the trajectory of where they were going? To me, that's the most important thing. Mikkael Sekeres: You've so wonderfully separated: The patient is not the diagnosis; it's a person. And the diagnosis is some component of that person. And it's the reason we're seeing each other, but it doesn't define that person. Megan Dupuis: That's right. We're crossing streams at a very tough point in their life. But there was so much that came before that. And in the piece that I wrote, you know, what is the language? What is the food? What is the family? What are all of those things, and how do they come together to make you the person that you are, for what's important to you in your life? And I think as oncologists, we're often trying to unravel in some way what is important. I could spend all day talking to you about PFS and OS for a specific drug combination, but is that really getting to meeting the goals of the patient and where they're at? I think it's easy to sort of say, “Well, this is the medicine that's going to get you the most overall survival.” But does it acknowledge the fact that you are a musician who can't have neuropathy in your fingers if you still want to play? Right? So those things become incredibly important when we're deciding not just treatment planning, but also what is the time toxicity? You know, do you have the time and ability to come back and forth to clinic for weekly chemotherapy or what have you? So those things, to me, become incredibly important when I'm talking to a person sitting across from me. Mikkael Sekeres: Do your patients ever get surprised that you're asking such broad questions about their life instead of narrowing down to the focus of their cancer? Megan Dupuis: Sometimes. I will say, sometimes patients are almost so anxious, of course, with this new diagnosis, they want to get into it. You know, they don't want to sit there and tell me the name of the horses on their farm, right? They want to know, “What's the plan, doc?” So I acknowledge that, and I say to them in the beginning, “Hey, if you give me five minutes of your time to tell me who you are as a person, I promise this will come back around later when we start talking about the options for treatments for you.” Most of the time, though, I think they're just happy to be asked who they are as a person. They're happy that I care. And I think all of us in oncology care—I think that's... you don't go into a field like this because you're not interested in the human experience, right? But they're happy that it's demonstrable that there is a... I'm literally saying, “What is the name of your dog? What is the name of your child who lives down the street? Who are your kids that live far away? You know, do you talk to them?” They want to share those things, and they want to be acknowledged. I think these diagnoses can be dehumanizing. And so to rehumanize somebody does not take as much time as we may think it does. Mikkael Sekeres: I 100% agree with you. And there can be a selfish aspect to it also. I think we're naturally curious people and want to know how other people have lived their lives and can live those lives vicariously through them. So I'm the sort of person who likes to do projects around the house. And I think, to the dismay of many a professional person, I consider myself an amateur electrician, plumber, and carpenter. Some of the projects are actually up to code, not all. But you get to learn how other people have lived their lives and how they made things. And that could be making something concrete, like an addition to their house, or it can be making a life. Megan Dupuis: Yeah, I love that you say that it is selfish, and we acknowledge that. You know, sometimes I think that we went into internal medicine and ultimately oncology... and I don't mean this in a trite way: I want the gossip about your life. I want the details. I want to dig into your hobbies, your relationships, what makes you angry, what makes you excited. I think they're the fun things to learn about folks. Again, in some ways, I think the cancer diagnosis is almost such a trite or banal part of who a human is. It's not to say that it's not going to shape their life in a very profound way, but it's not something they picked. It's something that happened to them. And so I'm much more excited to say, “Hey, what are your weekend hobbies? Are you an amateur electrician?” And that dovetails deeply into what kind of treatment might help you to do those things for longer. So I think it is a little bit selfish that it gives me a lot of satisfaction to get to know who people are. Mikkael Sekeres: So part of what we're talking about, indirectly, is the sense of otherness. And an undercurrent theme in your essay is otherness. You were an 'other' as a fellow in training and working in Texas when you grew up in upstate New York. And our patients are also 'others.' They're thrust into this often complicated bedlam of cancer care. Can you talk about how you felt as an 'other' and how that's affected your approach to your patients? Megan Dupuis: I think in the cancer experience, we are 'other,' definitionally, from the start, for exactly the reasons that you said. I'm coming to it as your physician; you're coming to it as my patient. This is a new encounter and a new experience for both of us. I think the added layer of being this person from upstate New York who didn't... I mean, I minored in Spanish in college, but that's not the same thing as growing up in a culture that speaks Spanish, that comes from a Spanish-speaking country—the food, the culture. It's all incredibly different. And so the way that I approached it there was to say, “I am genuinely curious. I want to know what it's like to be... /episode/index/show/aoopodcast/id/36085010

The First Hero: A Son Reflects on His Father’s Illness 03/25/2025

The First Hero: A Son Reflects on His Father’s Illness Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "” by Christopher Kim, who is a research assistant at Institute for Stem Cell Biology and Regenerative Medicine at Stanford University. The poem is followed by an interview with Kim and host Dr. Mikkael Sekeres. Kim reflects on his post-surgery sonnet. TRANSCRIPT Narrator: , by Christopher Kim, BS When he is like this—eyes closed, face still— he is unfamiliar. He wears a face younger than usual; fragile limbs washed in fluorescent light, eyes blurred with a diagnosis or ripe hyacinths or the last words we shared. Be good, son. Be bright. When he is still, anesthetized into memory, so too are the aphids in the garden. Lines of buzzing bodies descended from flight but clustered in quiet surrender. Fathers of sons who are trying to heal, who are failing, who retreat into the silence of sterile rooms. A heartbeat stutters and everything sings. Like the birds we watch outside the ICU window: how they peck at unyielding concrete and fill themselves with sharpness, their bodies frenzied, their bodies temporary. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Today, I am so thrilled to be joined by Christopher Kim. He's a research assistant at the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University. In this episode, we will be discussing his Art of Oncology poem, “The First Hero.” At the time of this recording, our guest has no disclosures. Both he and I have agreed to address each other by first names during the podcast. Chris, welcome to our podcast and thank you for joining us. Christopher Kim: Of course. Thank you so much for having me. It's just such an honor to be here. Mikkael Sekeres: We absolutely loved your poem. It was incredible and addressed a topic I think a lot of us face at some point in our lives and that's when we see a family member who's sick. Before we get into that, I was wondering if you can tell us a little bit about yourself. Where are you from and how did you get to this point? Christopher Kim: Absolutely, yeah. As you mentioned before, I'm working as a research assistant at the Stanford Medical School and I pretty much only recently graduated from college so I feel like I'm still in this like ‘in between’ stage. I'm a Bay Area native. I went to Stanford for undergrad, just kind of stayed on with the lab that I worked with while I was an undergrad. I would like to go on to medical school in the future. I'm learning a lot working as a research assistant, getting some hands-on experience with basic biology research. And another thing about myself is I'm an avid musician, play violin, play guitar. I like to sing. And of course, I really enjoy writing as well. Mikkael Sekeres: That's a great background. Well, we definitely need more doctors who are writers, musicians and singers. So you fit that bill. And then the fact that you do some lab based research is just amazing. You sound like a polymath. Christopher Kim: Oh, I don't know about that. I try my best. Mikkael Sekeres: Can you tell us a little bit about your own story as a writer? How long have you been writing poetry? When did you get started? And how did you get started? Christopher Kim: Yeah, absolutely. So, I've always written sort of on my own, so I don't think I ever had the courage to share my writing with others because, you know, it's kind of a vulnerable thing to share your inner thoughts with someone. So I have been kind of writing on my own since maybe late middle school and early high school. That's when I started putting my thoughts onto paper. But I only recently started to submit my poetry to, you know, these journals because, you know, after a while I was thinking, I think they're worth sharing with others because maybe some people may be going through similar situations where they can feel a little bit encouraged by the words that I write in terms of, you know, feeling the emotions that they feel. Mikkael Sekeres: Well, lucky for us, you made that decision. So when you were an undergrad, did you take any writing courses? Because it's interesting, you've been in the area of writing since you were in middle school, high school. That must have continued through college. And sometimes formal courses help us refine those skills. But then there are also plenty of examples of people who just did it on their own. Christopher Kim: Absolutely. The main writing course I took, funnily enough, they weren't really creative writing courses. They were more rhetoric based or kind of just like the regular English writing classes at college undergraduates take. However, I did have a group of friends who I would share my writing with. I think that was like the most important part of my sort of evolution as a writer. Because before I would just kind of write on my own and maybe kind of hide it away, you know, in my little locked box, I guess. But then having this opportunity to meet other people my age, my peers, who, you know, I finally gained enough kind of courage to– I say courage, but I really mean, like I finally gained enough comfort to share it with them. And, you know, gaining their feedback and seeing their response was really the most important part of, I think, my writing in college. So not necessarily like formal classes, but more like the people I met and how they responded to my writing, which is- I'm really thankful for them. Mikkael Sekeres: You know, it's so interesting because there is this temptation to be like Emily Dickinson and write your poems and squirrel them away in your desk and never show them to anyone. And then, you know, the body of your work is discovered posthumously, which I think is kind of sad. I mean, you know, great that we have Emily Dickenson poetry, but it would have been nice that, you know, she had known how appreciated she was during her lifetime. Christopher Kim: Oh, absolutely. Mikkael Sekeres: And I think the hardest first step is that word that you use, courage. The courage to identify people outside of ourselves, to share our poetry with, or our narrative pieces. So how did you find those people? Christopher Kim: It's often the case that, you know, you make your closest friends when you kind of struggle together. So I think a lot of these friends I met were through taking courses together that were difficult and that sort of combined, I don't want to say misery, that's maybe too strong a word, combined struggle against one common goal. I think that's when we started becoming close. And then it was like outside of a writing context. But I think, I don't know, it's like part luck and part finding these people in these classes and then having conversations with them late at night and then eventually going towards sharing your arts, whatever. Some of them are musicians. They share their music. Some of us share our writing. Mikkael Sekeres: Yeah. No, I hear you. There's that shared experience of being in difficult situations. I think a lot of us who've gone through undergrad and med school and then became doctors and started our training, we have incredibly close friends. We met in our residencies and fellowship because those were major stressor points in our lives and major transitional phases also when we felt that we grew. The other aspect that I've heard in identifying people to be first readers of your poetry or prose is to identify people you trust. People who are friends will give you a good read, will be appropriately critical, and will also be encouraging. You need those people to feed back to you truth about the quality of your writing and provide substantive criticism that helps you grow as a writer. Christopher Kim: Definitely agree. You know, you’ve found your true friends when they're not afraid to criticize you because they're so close to you and they really want you to be better. So, yeah, I definitely agree with that. Mikkael Sekeres: Yeah. And those who will take it seriously where, I think plenty of times in my own life where I've given a piece of writing to somebody, hoping for good feedback, and then you feel like you have to hound them to finally get that feedback. And obviously they're not invested in it, as opposed to a trusted body of readers where they are going to take it seriously, they're going to read it closely, and then they're going to get back to you without you feeling as if you're imposing on them. Christopher Kim: Absolutely. Yeah. It's very valuable once you've found that group of people or friends, and you know, I still contact them regularly today. So, yeah, as you mentioned, you know, I think it's definitely like maybe a lifelong process or lifelong friendship where you can always go back to them for sort of that support. And you also are able to provide that support for your friends, too. Mikkael Sekeres: Yeah. I'm curious about your writing process. What triggers you to start a poem? And, you know, how do you face that dreaded blank page? Christopher Kim: Bay Area traffic can be very long and the commute can be pretty rough. Mikkael Sekeres: Not at all like that in Miami, by the way. In Miami, we just breeze through traffic. Yeah, not at all. Christopher Kim: I would love to visit someday to compare. But yeah, Bay Area traffic can be pretty rough. As much as I love podcasts and music, there comes a point where I kind of run out of things to listen to after a while. So I really found myself driving along, but then letting my thoughts wander. And funnily enough, that's when my creative inspirations hit. Maybe it's because there's something about driving that's like the perfect amount of not thinking. You know, it's like an automatic process and that let’s your– obviously I'm paying attention to the road - but you kind of let your mind wander through creative thoughts, and that's on place of creative inspiration. I've had close family members who have struggled with cancer specifically, and other serious health issues, and I've had experiences being a caretaker for them, like ‘The First Hero’. Being in that position really inspires you to write, I think, for me. Mikkael Sekeres: So I wonder if I could follow up on that and if you're only comfortable doing so. Can you tell us what prompted you to write “The First Hero”? Christopher Kim: So it's kind of a combination of experiences. My grandfather struggled with cancer for a long time, and eventually he passed away from cancer. Mikkael Sekeres: I'm sorry. Christopher Kim: I appreciate that. Thank you. And he had cancer when I was a young child, which luckily went into remission for a couple years. But then later on, you know, as I started college, that's when it came back, and that's when he passed. And I think seeing his struggles with cancer, that was one big part of inspiration for this poem. But also another thing was my father also went through some health issues where he had to go through surgery and a long period of recovery, and he still kind of struggles with some issues today. And seeing people that you love that much in a position where it's really hard, especially when they're father figures in your life. They're your grandfather and your father. And, you know, when you're a kid, you know, your dad is like, they’re a superhero. Your dad is the hero who can do anything, who can achieve any answer, any question you have, who can build anything you want, can buy you things, you know, all that stuff. But now seeing them in this reverse state of being vulnerable and not being able to do too much, it really affected me. And those two experiences were my main inspiration for this poem. Mikkael Sekeres: That was really beautifully said, Chris. I'm a parent of three, and I think that it comes with a lot of responsibility to remember that just carrying the title of mom or dad implies so much to one of your own children that you have to remember the import of everything that you do for them, for your kids, and everything that you say. And it carries just that much added significance because of the role we play as parents. It's so interesting to hear it enunciated by you in that way as well. And I think part of what makes good parents, there are a thousand things that go into the formula of a good parent, and we only know for sure if we made it, if, depending on the amount of therapy our kids have to go through when they're older, right? I think part of that, though, is remembering the great responsibility that comes with just simply the title of being a parent. Christopher Kim: Absolutely. Mikkael Sekeres: You started to talk a little bit about this. I'm curious about how the dynamic between parents and children changes when a parent is sick. Christopher Kim: Yeah, it's kind of a reversal of roles in a way, because your parents, when you're born, you're the most vulnerable. They're responsible for sort of ushering you into this world, keeping you alive. Seeing your parents grow older and seeing them aging is a tough experience. And my mom often tells me whenever she would see her parents, after a while, in her mind, she still sees her parents as when they were their younger selves, when she was younger. But then suddenly it would hit her that they're, like, much older and that also makes you feel a little bit more aware of how you are aging and how much older you are. But at the end of the day, they're always going to be your parents. Mikkael Sekeres: They really are. Our parents age and we age with them, and we evolve in how we view parents, and we all go through this, and I don't think it ever ends until your parents pass. I'm sure you're familiar with this. There's a saying that you never really become an adult until your parents pass. Christopher Kim: You mentioned that you're more aware of what parenthood is as you get older. I mean, obviously I don't have any kids myself, but I'm sure my parents always USED say to me, you know, “You’ll understand when you have kids.” Mikkael Sekeres: You sort of do. You sort of do. Christopher Kim: I sort of do. Right, exactly. Mikkael Sekeres: My dad always said to me that parenting is unskilled labor. So you sort of get it when you're a parent, you're still really figuring it out. Christopher Kim: Absolutely. Yeah. And the older I get, it's like I realize. I think I've gained more appreciation for the sacrifices my parents have made for me, and I've definitely taken their parenthood lessons to heart for whenever, if I choose to have kids later on. Mikkael Sekeres: So that's great. I'm sure they'd be thrilled to hear that, Chris. I wanted to end with one last question for you. Are there poets who've been a particular influence on you or favorite poets you want to name? Christopher Kim: One name that kind of comes to mind is there's a poet named Ocean Vuong. Their work blends together personal history and like, family history with beautiful lyricism. They always feel like musical in a way. Their words kind of often linger on with you long after. Mikkael Sekeres: That's great. Well, listen, Chris Kim, I'd like to thank you so much for joining us on today's podcast and for your absolutely beautiful poem, “The First Hero.” Christopher Kim: Thank you so much for having me. I'm super thrilled to be on. This is my first podcast ever, so it was such a great experience. I felt so welcomed. So thank you for, you know, hearing my thoughts or listening to my thoughts. I appreciate it. Mikkael Sekeres: Well, you're good at them. Keep them up. Until next time. Thank you for listening to JCO's Cancer Stories: The art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. Until next time. Thanks so much for joining us. 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. so you never miss an episode and leave a rating or review. Guest Bio: Christopher Kim is a research assistant at the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University. /episode/index/show/aoopodcast/id/35795680

I Hope So Too: Creating Space to Hope with Patients and Families 03/13/2025

I Hope So Too: Creating Space to Hope with Patients and Families Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by Dr. Richard Leiter from Dana-Farber Cancer Institute. The article is followed by an interview with Leiter and host Dr. Mikkael Sekeres. Leiter shares that even in the most difficult moments, clinicians can find space to hope with patients and their families. TRANSCRIPT Narrator: , by Richard E. Leiter, MD, MA “You’re always the negative one,” Carlos’ mother said through our hospital’s Spanish interpreter. “You want him to die.” Carlos was 21 years old. A few years earlier he had been diagnosed with AML and had undergone an allogeneic bone marrow transplant. He was cured. But now, he lay in our hospital’s bone marrow transplant (BMT) unit, his body attacked by the very treatment that had given him a new life. He had disseminated graft-versus-host disease (GVHD) in his liver, his lungs, his gut, and, most markedly, his skin. The BMT team had consulted us to help with Carlos’ pain. GVHD skin lesions covered his body. They were raw and weeping. Although the consult was ostensibly for pain, the subtext could not have been clearer. Carlos was dying, and the primary team needed help navigating the situation. As his liver and kidney function declined, the need to address goals of care with Carlos’ mother felt like it was growing more urgent by the hour. Difficult cases, like a young person dying, transform an inpatient unit. Rather than the usual hum of nurses, patient care associates, pharmacy technicians, and unit managers going about their daily work, the floor becomes enveloped in tension. Daily rhythms jump a half step ahead of the beat; conversations among close colleagues fall out of tune. “Thank goodness you’re here,” nurse after nurse told my attending and me, the weight of Carlos’ case hanging from their shoulders and tugging at the already puffy skin below their eyes. I was a newly minted palliative care fellow, just over a month into my training. I was developing quickly, but as can happen with too many of us, my confidence sat a few steps beyond my skills. I thought I had a firm grasp of palliative care communication skills and was eager to use them. I asked for feedback from my attendings and genuinely worked to incorporate it into my practice. At the same time, I silently bristled when they took charge of a conversation in a patient’s room. Over the ensuing week, my attending and I leaned in. We spent hours at Carlos’ bedside. If I squinted, I could have convinced myself that Carlos’ pain was better. Every day, however, felt worse. We were not making any progress with Carlos’ mother, who mostly sat silently in a corner of his room. Aside from occasionally moaning, Carlos did not speak. We learned little, if anything, about him as a person, what he enjoyed, what he feared. We treated him, and we barely knew him. Each morning, I would dutifully update my attending about the overnight events. “Creatinine is up. Bili is up.” She would shake her head in sadness. “Doesn’t she get that he’s dying?” one of the nurses asked us. “I feel like I’m torturing him. He’s jaundiced and going into renal failure. I’m worried we’re going to need to send him to the ICU. But even that won’t help him. Doesn’t she understand?” We convened a family meeting. It was a gorgeous August afternoon, but the old BMT unit had no windows. We sat in a cramped, dark gray family meeting room. Huddled beside Carlos’ mother was everyone on the care team including the BMT attending, nurse, social worker, chaplain, and Spanish interpreter. We explained that his kidneys and liver were failing and that we worried time was short. Carlos’ mother had heard it all before, from his clinicians on rounds every day, from the nursing staff tenderly caring for him at his bedside, and from us. “He’s going to get better,” she told us. “I don’t understand why this is happening to him. He’s going to recover. He was cured of his leukemia. I have hope that his kidneys and liver are going to get better.” “I hope they get better,” I told her. I should have stopped there. Instead, in my eagerness to show my attending, and myself, I could navigate the conversation on my own, I mistakenly kept going. “But none of us think they will.” It was after this comment that she looked me right in the eyes and told me I wanted Carlos to die. I knew, even then, that she was right. In that moment, I did want Carlos to die. I could not sit with all the suffering—his, his mother’s, and his care team’s. I needed her to adopt our narrative—that we had done all we could to help Carlos live, and now, we would do all we could to help him die comfortably. I needed his mother to tell me she understood, to accept what was going on. I failed to recognize what now seems so clear. Of course, his mother understood what was happening. She saw it. But how could we have asked her to accept what is fundamentally unacceptable? To comprehend the incomprehensible? At its best, serious illness communication not only empathetically shares news, be it good or bad, but also allows patients and families adequate time to adjust to it. For some, this adjustment happens quickly, and in a single conversation, they can digest difficult news and move to planning the next steps in care for themselves or their loved ones. For most, they need more time to process, and we are able to advance the discussion over the course of multiple visits. My attending led the conversations from then on. She worked with the BMT attending, and they compassionately kept Carlos out of the intensive care unit. He died a few days later, late in the evening. I never saw his mother again. I could not have prevented Carlos’ death. None of us could have. None of us could have spared his mother from the grief that will stay with her for the rest of her life. Over those days, though, I could have made things just a little bit less difficult for her. I could have protected her from the overcommunication that plagues our inpatient units when patients and families make decisions different from those we would make for ourselves and our loved ones. I could have acted as her guide rather than as her cross-examiner. I could have hoped that Carlos stopped suffering and, genuinely, hoped he got better although I knew it was next to impossible. Because hope is a generous collaborator, it can coexist with rising creatinines, failing livers, and fears about intubation. Even in our most difficult moments as clinicians, we can find space to hope with our patients, if we look for it. Now—years later, when I talk to a terrified, grieving family member, I recall Carlos’ mother’s eyes piercing mine. When they tell me they hope their loved one gets better, I know how to respond. “I hope so too.” And I do. Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center at University of Miami. Today I am thrilled to be joined by Dr. Ricky Leiter from the Dana-Farber Cancer Institute. In this episode, we will be discussing his Art of Oncology article, “I Hope So, Too.” Our guest’s disclosures will be linked in the transcript. Ricky, welcome to our podcast and thank you so much for joining us. Dr. Ricky Leiter: Thanks so much for having me. I'm really excited to be here. Dr. Mikkael Sekeres: Ricky, I absolutely adored your essay. It really explored, I think, a combination of the vulnerability we have when we're trying to take care of a patient who's dying and the interesting badlands we're placed in when we're also a trainee and aren't quite sure of our own skills and how to approach difficult situations. But before we dive into the meat of this, can you tell us a little bit about yourself? Where are you from and where did you do your training? Dr. Ricky Leiter: Sure, yeah. Thanks so much. So I grew up in Toronto, Canada, and then moved down to the States for college. I was actually a history major, so I never thought I was going to go into medicine. And long story short, here I am. I did a Post-Bac, did a year of research, and ended up at Northwestern Feinberg School of Medicine for med school, where I did a joint degree in medical humanities and bioethics. And that really shaped my path towards palliative care because I found this field where I said, “You know, wow, I can use these skills I'm learning in my Master's at the bedside with patients thinking about life and death and serious illness and what does that all mean in the broader context of society.” So, moved from Chicago to New York for residency, where I did residency and chief residency in internal medicine at New York Presbyterian Cornell, and then came up to the Harvard Interprofessional Palliative Care Program, where I did a clinical fellowship, then a research fellowship with Dana-Farber, and have been on faculty here since. Dr. Mikkael Sekeres: Fantastic. Any thoughts about moving back to Canada? Dr. Ricky Leiter: We talk about it every now and then. I'm really happy here. My family's really happy here. We love life in Boston, so we're certainly here for the time being. Definitely. Dr. Mikkael Sekeres: And the weather's so similar. Dr. Ricky Leiter: Yeah, I’m used to the cold. Dr. Mikkael Sekeres: I apparently did not move to Miami. I'm curious, this may be an unfair question, as you have a really broad background in humanities and ethics. Are there one or two books that you read where you think, “Gee, I'm still applying these principles,” or, “This really still resonates with me in my day to day care of patients who have cancer diagnosis”? Dr. Ricky Leiter: Oh, wow, that is a great question. There are probably too many to list. I think one is When Breath Becomes Air by Paul Kalanithi, which I didn't read in my training, I read afterwards. And I think he's such a beautiful writer. The story is so poignant, and I just think Paul Kalanithi's insights into what it means to be living with a serious illness and then ultimately dying from cancer as a young man, as someone in medicine, has really left an imprint on me. Also, Arthur Kleinman. The Illness Narratives, I think, is such a big one, too. And similarly, Arthur Frank's work. I mean, just thinking about narrative and patient stories and how that impacts our clinical care, and also us as clinicians. Dr. Mikkael Sekeres: And I suspect us as writers also. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: We imprint on the books that were influential to us. Dr. Ricky Leiter: Certainly. Dr. Mikkael Sekeres: So how about your story as a writer? How long have you been writing narrative pieces? Is this something you came to later in your career, or did you catch the bug early as an undergrad or even younger? Dr. Ricky Leiter: So I caught it early, and then it went dormant for a little while and came back. As a history major, as someone who is humanities minded, I loved writing my papers in college. Like, I was one of those nerds who got, like, really, really excited about the history term paper I was writing. You know, it was difficult, but I was doing it, particularly at the last minute. But I really loved the writing process. Going through my medical training, I didn't have as much time as I wanted, and so writing was sort of on the back burner. And then actually in my research fellowship, we had a writing seminar, our department, and one of the sessions was on writing Op-eds and perspective pieces. And we had a free write session and I wrote something sort of related to my research at the time I was thinking about, and Joanne Wolfe, who was helping to lead the session, pediatric palliative care physician, she said, “You know, this is really great. Like, where are you going to publish this?” And I said, “Joanne, what do you mean? I just wrote this in this session as an exercise.” She said, “No, you should publish this.” And I did. And then the bug came right back and I thought, “Wow, this is something that I really enjoy and I can actually make a difference with it. You know, getting a message out, allowing people to think a little bit differently or more deeply about clinical cases, both in the lay press and in medical publications.: So I've essentially been doing it since and it's become a larger and larger part of my career. Dr. Mikkael Sekeres: That's absolutely wonderful, Ricky. Where is it that you publish then, outside of Art of Oncology? Dr. Ricky Leiter: So I've had a couple of pieces in the New York Times, which was really exciting. Some in STAT News on their opinion section called First Opinion, and had a few pieces in the New England Journal as well, and in the Palliative Care Literature, the Journal of Palliative Medicine. Dr. Mikkael Sekeres: Outstanding. And about palliative care issues and end of life issues, I assume? Dr. Ricky Leiter: Sort of all of the above. Palliative care, serious illness, being in medical training, I wrote a fair bit about what it was like to be on the front lines of the pandemic. Dr. Mikkael Sekeres: Yeah, that was a traumatic period of time, I think, for a lot of us. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: I'm curious about your writing process. What triggers a story and how do you face the dreaded blank page? Dr. Ricky Leiter: So it's hard to pin down exactly what triggers a story for me. I think sometimes I'm in a room and for whatever reason, there's a moment in the room and I say, “You know what? There's a story here. There's something about what's going on right now that I want to write.” And oftentimes I don't know what it is until I start writing. Maybe it's a moment or a scene and I start writing like, “What am I trying to say here? What's the message? And sometimes there isn't a deeper message. The story itself is so poignant or beautiful that I want to tell that story. Other times it's using that story. And the way I think about my writing is using small moments to ask bigger questions in medicine. So, like, what does it mean to have a good death? You know, one piece I wrote was I was thinking about that as I struggled to give someone what I hoped would be a good death, that I was thinking more broadly, what does this mean as we're thinking about the concept of a good death? Another piece I wrote was about a patient I cared for doing kidney palliative care. And she was such a character. We adored her so much and she was challenging and she would admit that. This was someone I wanted to write about. And I talked to her about it and she was honored to have her story told. Unfortunately, it came out shortly after her death. But she was such a vibrant personality. I said, “There's something here that I want to write about.” In terms of the blank page, I think it's overcoming that fear of writing and procrastination and all of that. I think I have a specific writing playlist that I put on that helps me, that I've listened to so many times. You know, no words, but I know the music and it really helps me get in the zone. And then I start writing. And I think it's one of those things where sometimes I'm like, “Oh, I really don't like how this is sounding, but I'm going to push through anyways.” as Anne Lamott's blank first draft, just to get something out there and then I can play with it and work with it. Dr. Mikkael Sekeres: Great. I love the association you have with music and getting those creative juices flowing and picking ‘le mot juste’ in getting things down on a page. It's also fascinating how we sometimes forget the true privilege that we have as healthcare providers in the people we meet, the cross section of humanity and the personalities who can trigger these wonderful stories. Dr. Ricky Leiter: Absolutely. Absolutely. It's such a privilege and I think it often will go in unexpected directions and can really impact, for me certainly, my practice of medicine and how I approach the next patients or even patients years down the road. You remember those patients and those stories. Dr. Mikkael Sekeres: Right. You write with such obvious love and respect for your patients. You also write about that tenuous phase of our careers when we're not yet attendings but have finished residency and have demonstrated a modicum of competence. You know, I used to say that fellowship is really the worst of all worlds, right? As an attending, you have responsibility, but you don't have to do as much of the grunt work. As a resident, you do the grunt work, but you don't really have the responsibility. And in fellowship, you’ve got it all. You've got to do the grunt work, and you have the responsibility. Can you tie those two concepts together, though? How does our relationship to our patients change over the course of our careers? Dr. Ricky Leiter: Early on, if you think about the imprinting of patients as you go down the road, so many of the patients who have imprinted on me were the ones earlier in my career, before I was more formed as a clinician because of experiences like the one I wrote about in “I Hope so Too,” where the skills are forming, and sometimes where it's smooth sailing, and sometimes we're muddling through. And those cases where we feel like we're muddling through or things don't go as we hope, those are the ones that really leave an impact. And I think it's those little moments that sort of nudge your career and your skill set in different ways. I think the patients now, they still leave a mark on me, but I think it's in different ways. And I think oftentimes it's less about my skills. Although my skills are still very much developing, even, you know, almost a decade out, they impact me differently than they once did. I feel more confident in what I'm doing, and it's more about my relationship to this situation rather than the situation's impact on my skills. Dr. Mikkael Sekeres: Got it. Got it. It's interesting. I once wrote a piece with Tim Gilligan, who also spent some time at Dana Farber and is a communications expert, about how there's this kind of dualism in how we're trained. We're trained with communications courses and how to talk to patients, and it almost does the opposite. It kind of raises the flag that, “Wait a second, maybe I've been talking to people the wrong way.” And as you get more mature in your career, I almost feel as if you revert back to the way you were before medical school, when you just talked to people like they were people and didn't have a special voice for patients. Dr. Ricky Leiter: Yeah, I think that's right. And I think in palliative care, we spend so much time thinking about the communication. And this was the most challenging piece about fellowship because then- and our fellowship directors told this to us, and now we teach it to our fellows. You know that you come in, the people who choose to go into palliative care, have a love of communication, have some degree of skill coming in, and then what happens is we break those skills down and teach them a new skill set. So it gets clunkier before it gets better. And the time I was writing about in this piece was August of my fellowship year, exactly when that process was happening, where I'm trying to incorporate the new skills, I had my old way of doing things, and it's just not always aligning. And I think you're right that as the skills become embedded, as you go on throughout your career, where it feels much more natural, and then you do really connect with people as people still using the skills and the techniques that we've learned in our communication courses, but they become part of who you are as a clinician. Dr. Mikkael... /episode/index/show/aoopodcast/id/35672450

You Don't Bring Me Flowers: Hospital Policy vs. Patient Joy 01/28/2025

You Don't Bring Me Flowers: Hospital Policy vs. Patient Joy Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by Dr. Kathryn Cappell, who is an Assistant Research Physician at the National Cancer Institute. The article is followed by an interview with Cappell and host Dr. Mikkael Sekeres. Dr Cappell shares the difficulty in protecting oncology patients without taking away things that bring them joy. TRANSCRIPT Narrator: , by Kathryn Cappell, MD, PhD Easter morning dawned a beautiful spring day in Washington, DC. Soft sunlight and a cool breeze streamed through my bedroom window. My children woke up early, and I listened to their shouts of delight as they found their baskets, brimming with grass and chocolate eggs wrapped in pink and purple foil. Later that morning, I drove to a local hospital where I was rounding. Cherry blossom trees bursting with pink flowers bloomed throughout our peaceful neighborhood, and their showers of pollen had coated my car windows in a soft dusting of green. I put my arm out the car window and caught the heavy scent of flowers as fresh air flooded in. The fifth patient on my rounds, Evelyn, had been in the hospital for 22 days. This morning, as the charge nurse, Frances, and I entered the room, I noticed a vase brimming full of bright pink flowers beside her bed. Evelyn caught my eye and looked guiltily at her lovely bouquet. “I know it’s against the rules,” she said, “but my son brought them, and they make me so happy.” Fresh flowers were indeed against ward policy. Theoretically, flowers could introduce fungal spores that could float through the air and lodge into the vulnerable lungs of our neutropenic patients. Evelyn was not the only patient who had received flowers. On that Easter day, the elevator area outside the oncology ward bloomed with forbidden flowers mistakenly brought by other loving sons. Frances kindly offered to take a picture of the flowers for Evelyn and print it out. Frances explained that this way she could still enjoy the picture while protecting herself and other patients on our ward. I found myself unsure; I wanted Evelyn to have the joy of the flowers during her long hospitalization. I could picture her son, a lumbering man in his 60s, carefully selecting the flowers last night. He was a quiet man, and I got the impression that bringing flowers was a way for him to share his feelings about his mother. Evelyn had been separated from her family for almost a month and was isolated in a hospital room without the ability to even open a window to enjoy a fresh breeze. She had maintained her gentle and positive attitude throughout, bravely battling complications from chemotherapy. The flowers probably brought her a little chance to savor the beauty of Spring and reflect on the love from her son. I did not want to take that from her. Still, I knew the importance of ward policies and protecting our vulnerable patients. I dislike taking things from my patients, but I have been diligently doing so for most of my career. As a medical student and resident, I remember oncology patients struggling to tolerate a neutropenic diet devoid of many fresh fruits and vegetables. A generation of doctors advised patients that the neutropenic diet was necessary to protect them from infections. I recall one young boy with leukemia repeatedly asking for fresh blueberries and the medical team insisting he follow the neutropenic diet. He eventually got sicker and died; I am not sure if he ever got a blueberry. I think of him with a lingering tension that we did him wrong by taking away something that could have brought him joy before he died. This is particularly true because the neutropenic diet has now been largely debunked.1 The modern oncology patient enjoys the blueberries that only 20 years ago we would have assiduously removed from the room. Like the neutropenic diet, there is little evidence that fresh flowers pose a significant infection risk. Fungal spores could theoretically also come into the ward on fresh fruits and the dusttracked in on employee shoes, yet we ban neither of these. The CDC hospital infection control recommendations note that there are minimal evidence-based studies in this area but cautiously recommend against flowers in areas where immunosuppressed patients are located. The lack of evidence is reflected in varying hospital policies regarding flowers; some major medical centers ban flowers on the oncology ward and others do not. I stood before Evelyn with her pink flowers, as she implored me to overrule the policy and allow her to keep them. Bright sunlight shone in through her window and the room felt stuffy and closed, in stark contrast to the lovely outdoor scene. The flowers did add a hint of beauty to an otherwise sterile-appearing room. The vase that held these was clean and the water crystal clear. If we tested the flowers and water, would it be brimming with fungus that would subsequently endanger Evelyn and others on the ward? Who knew? In the absence of evidence, I followed the rules. Evelyn’s face fell as I concurred with Frances that it was ward policy to not allow flowers in the room. She was too polite to argue, and though she looked disappointed, her demeanor toward Frances and me did not change. Frances took a picture of the flowers and brought the picture back to Evelyn. The flowers were carefully moved to the oncology elevator lobby. I finished my rounds, put in orders, wrote my notes, and went home to my children. The afternoon was as lovely as when I went into work that morning. My kids rushed at me as I got out of the car, eager for a promised afternoon Easter Egg hunt. My son climbed on the apricot tree in front of our house, and little flower petals fell to the ground as the branches shook from his weight. He was still at an age where he would often pick dandelions in the yard and tuck these carefully behind my ear. It is his simple way of expressing love and it makes me feel cherished. I pictured him, a grown man, bringing flowers to me in the hospital someday, and how painful it might be to have those taken away. I could not quite shake the feeling I had made the wrong decision. I mentally reassured myself that it was hospital policy to take away Evelyn’s flowers, and after all, it was for her own protection. Was it not? Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Today, we're joined by Dr. Katy Cappell, Assistant Research Physician at the National Cancer Institute. In this episode, we will be discussing her Art of Oncology article, “You Don't Bring Me Flowers.” At the time of this recording, our guest has no disclosures. Katy, welcome to our podcast and thank you so much for joining us. Dr. Kathryn Cappell: Thank you. Dr. Mikkael Sekeres: It's such a delight to have you here. Can you just start by giving us a little bit of your background? Dr. Kathryn Cappell: I've been practicing mainly in hematologic malignancies, and at the time of the writing of this article, I was an Assistant Research Physician at the National Cancer Institute. Before that, I trained at University of Miami, actually, where you work, for my bachelor's. Then I went to University of North Carolina for an M.D. Ph.D., and then I was at Stanford for my residency, followed by NCI for my fellowship. Dr. Mikkael Sekeres: That's great. I didn't know about your University of Miami connection. I feel like I have to throw up a U to you on our video recording here. Dr. Kathryn Cappell: Yes. Your screen looks very recognizable from my undergrad. Dr. Mikkael Sekeres: Well, it's great to be reunited then with you. I was wondering if I could ask you to talk a little bit about your writing process. When did you start writing and when do you find the time to write? Dr. Kathryn Cappell: Yeah. So this is actually my first story that I've written in a long time, probably in 20 years. Dr. Mikkael Sekeres: Wow. Dr. Kathryn Cappell: I started writing this story because when I was rounding at this hospital, I always noticed the flowers being absent in rooms. And I liked to chart my notes at the nurse's station where a lot of patients would come and check in. And when they were checking in, I'd often hear people getting their flowers taken away and moved to the lobby. So I've been thinking about the piece for a long time, just from rounding and while I was listening to all these conversations about patients losing their flowers. So that's where it came from. And it's my first piece. Dr. Mikkael Sekeres: That's really amazing. It's a phenomenon we witness all the time when people with all of the best intentions bring things into patients who are in the hospital for three or four weeks, like those patients who are getting treatment for acute leukemia or those who are undergoing a transplant to try to make their room more recognizable and more homelike for them. And then we often see those things whisked away because of hospital policies. Dr. Kathryn Cappell: Yeah, definitely. Dr. Mikkael Sekeres: When you're writing, does an essay all come out at once or do you revisit it? So how do you refine your writing to transform it into a work of art? Dr. Kathryn Cappell: This piece, I started writing, probably, actually a year ago. It took me a long time to get started, to the point where I was thinking about it for a long time, thinking about the piece, for almost a year. I can remember that because I started thinking about it at ASH 2023, and I hadn't really finished it till ASH 2024. And during that time, a lot was going on in my head about how I would structure the piece. And then once I had started writing it, I went through multiple revisions before I got the courage to submit one to JCO. Dr. Mikkael Sekeres: I love how you frame it in terms of the courage to submit to JCO. I just read a post from Adam Grant, who's an economist and writes about kind of our actions in the workplace, and he mentioned the point that we often will put something off out of fear. It's not some kind of deliberate action on our part to avoid doing something that we don't want to do. It's really fear and fear of failure and fear of anxiety that prevents us from doing something. So you talk about courage. I think the flip side of courage is fear. Describe what that's like, that first moment that you decide, “Okay, I'm going to write a piece, and I want to write something that's public, that other people will see.” Dr. Kathryn Cappell: Yeah. I think most people, when they write, it's a very personal thing to share something that you've written, especially if you've been thinking about it in your mind for quite a long time. That's actually part of the reason I don't write very often is because of that. And I think you're right that it comes from fear of sharing it. So I started out by, I was just going to write this for myself. And then as I got more comfortable with it over time, I decided, “Well, I might as well share this piece to see what happens.” Dr. Mikkael Sekeres: Did you bounce the idea off of friends or colleagues to kind of see what their reaction would be before you kept taking those steps that eventually led to a completed piece and submitting it to JCO? Dr. Kathryn Cappell: Yes, I did bounce it off a friend who had the same experience in the same hospital with flowers getting taken away from patients. So I checked to see if other people had had the kind of same reaction to it as I had. Dr. Mikkael Sekeres: That's great. It's always helpful to have a cadre of supportive readers when you first start writing - people who are going to talk about what's great about your piece and then give you advice that you can trust that's more helpful in revising it. Dr. Kathryn Cappell: Yes. Dr. Mikkael Sekeres: I love how in this piece you explore the tension we face as hematologist-oncologists between recommending what we feel is medically appropriate for our patients and feeling as if we've taken away some of their agency and some of their liberty. Can you discuss this in a little more detail? Dr. Kathryn Cappell: You'd think that the hardest thing about being a hematologist-oncologist would be knowing all the drugs and knowing what you should do, but I think that that's actually one of the easier parts. The harder part is these kind of interactions that arise because I think they have an emotional component to them and that makes it harder to do, day in and day out, dealing with those things. I mean, I think hospital policies are important and they're there to protect people. So I think, in the end of the story, I did do what the hospital policy said to do. And I think that that's in some ways important to make sure we have a good environment for everybody on the ward. But I think it's really painful as a doctor to have to make those decisions where it impacts someone's agency and someone's joy and what they're getting out of a day to day life, especially when they're in the hospital for a really long time. Dr. Mikkael Sekeres: Was there something that you could do to make up for it? So sometimes we'll take something away like beautiful flowers for fear of introducing infection in a ward where people are immunocompromised. But we can make up for it by saying, “Okay, but we're okay with you bringing food in from the outside.” Dr. Kathryn Cappell: Yeah. So the nurse in the story, I mean, she definitely was trying to make up for it. She was a very sweet nurse with helping me. She went and printed out the picture of the flowers, which I think is one thing you can do, but another thing I've seen a lot of patients do and family members do is bring in paper flowers. They decorate the room in other ways, which I think makes it meaningful and still nice for people. And I think the nurses on our ward did a great job doing that too. They decorate the rooms and try to still keep a very nice environment. Dr. Mikkael Sekeres: That's terrific. What other things do family members do to try to make the room more of a home environment? Dr. Kathryn Cappell: Bringing in their own blankets for people so they have their own comforter on the bed is a big one. Bringing in pictures of family members, putting them on the walls, on the windows. Bringing in food from home I think is very important. Dr. Mikkael Sekeres: I completely agree. And there was a recent study looking at neutropenic precautions in a transplant unit and whether or not those actually improved the outcome of patients, and it turns out it didn't. So we've had these incredibly restrictive diets for patients that I think we can feel much more comfortable now relaxing and allowing people their comfort foods, which you, as a University of Miami graduate know, here involves a lot of Cuban food. Dr. Kathryn Cappell: Yeah, definitely. But I think that that neutrophenic diet is a great parallel to that. We start instituting things that kind of take away people's agency in something that brings them joy, but we might not have that great of evidence for it. And it really does impact people's happiness, I think, in a lot of ways and comfort in the hospital. Dr. Mikkael Sekeres: Yeah. And that's so important for getting through this ordeal of being in the hospital sometimes for weeks. You start and end the essay writing about your family, and this beautifully illustrates the freedom that they and you have compared to your patients who are confined to the hospital on a lovely holiday weekend. How do you navigate what must feel almost like survivor's guilt of being free from the hospital when others aren't, and being able to shift your focus to the joy of being around your children enjoying their holiday. Dr. Kathryn Cappell: Yeah, I think children help you focus it themselves. When I come home, they're pretty focused on what they want. They want their Easter egg hunt in the morning. They need their Easter baskets. So that alone brings you back into a different world. I come back, and suddenly I'm thinking about where the Easter eggs are going to go. That helps me a lot doing that. But I also think most people in oncology, most onc physicians, it is a difficult separation. You do think about your patients outside of work hours. That is something that's hard to do. But I'd say my children actually help me with that, getting my mind onto something different because they're just so active and they have so much going all the time. Dr. Mikkael Sekeres: It's interesting how you frame that also, how your children help you. I remember distinctly one time my daughter asked me, “How was work?” And I said, “Oh, it was a hard day because I had to tell somebody some bad news.” And she very deliberately said to me, “You need to separate what you tell us at home from what happens at work. We don't want to hear your sad stories.” Dr. Kathryn Cappell: Oh, that's a sad story in itself. Dr. Mikkael Sekeres: Well, it is, right? But it was kind of very helpful to me to realize that, yes, we do have to- we have to compartmentalize, not only for our own health, but also for the health of our family. We've chosen this path in our lives, which is this incredible opportunity to be around people who have a cancer diagnosis at a pivotal point in their lives. But our family hasn't necessarily made that same choice. Dr. Kathryn Cappell: The children don't understand it 100%. Dr. Mikkael Sekeres: Do you feel as if hematologists-oncologists are better at compartmentalizing maybe than other professionals in medicine? Dr. Kathryn Cappell: I'm not sure. I feel like a lot of medicine has those sad points that are difficult. So I think psychiatry is a good example of that. That's hard to, I think probably, very difficult to compartmentalize. So I'm not sure. I think other physicians also have difficulties with it. But I do think we see a lot of difficult scenarios more than other groups. So that could make it that we're better at compartmentalizing. Dr. Mikkael Sekeres: You mentioned in your essay, you refer to your patient's lumbering son. I love that phrase, the lumbering son who brings her the flowers. Do you think it helps to see that backstory to what's going on in your patients' lives? There's a risk of almost too much empathy, of knowing too much about it, and therefore having an even more difficult time separating yourself. Dr. Kathryn Cappell: For me, I think it helps with patient care a lot to know their family so you know where they're going back when they leave the hospital. You kind of know what helps, you know what they value. So I think in a lot of ways it does help for patient care to know what they're coming from in terms of family members. I do think sometimes getting too involved and knowing too much about the situation and attaching to it emotionally can make it hard to be objective. So I think that it's important to keep some distance there in terms of being able to make good decisions for your patients as well. Dr. Mikkael Sekeres: You mention looking at people's rooms and seeing the photos up on the wall. I always think we worry about the patients most who don't have any photos up on the wall and what kind of support system they're going back to when they're discharged from the hospital. Dr. Kathryn Cappell: Yeah, I definitely agree. That's definitely something I think about as well. Dr. Mikkael Sekeres: You end this beautiful essay by asking the question, and I'm quoting you now, “I couldn't quite shake the feeling I'd made the wrong decision. I mentally reassured myself that it was hospital policy to take away Evelyn's flowers. And after all, it was for her own protection, wasn't it?” And I'm wondering, I'm going to... /episode/index/show/aoopodcast/id/35050515

Host Transition: Meet Cancer Stories New Host Dr. Mikkael Sekeres 01/14/2025

Host Transition: Meet Cancer Stories New Host Dr. Mikkael Sekeres We say thank you to current Cancer Stories host, Dr. Lidia Schapira, and welcome Cancer Stories new host, Dr. Mikkael Sekeres. TRANSCRIPT Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University, and with me today is Dr. Mikkael Sekeres, who is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami. In this episode, we will be discussing his new role as the host for the JCO Cancer Stories: The Art of Oncology podcast. Mikkael, welcome to our podcast and thank you for joining me today. Dr. Mikkael Sekeres: Lidia, what an absolute delight it is to be here with you. And I have to confess, it's also intimidating to think about taking this over from you, given the amazing job you've done over the past few years. Dr. Lidia Schapira: Well, thank you so much for that. This podcast originated as a bit of a dare. When Steve Cannistra, back in 2017, said ‘no’ to some idea that I had for changing or expanding the section and issued the dare of why don't you do a podcast instead? And back in 2017, I had no idea. And we were less used to podcasts, so I trained myself. And then this beautiful new form sort of emerged just from my idea and dream of giving our listeners and our readers something new to chew on and to reflect on. Dr. Mikkael Sekeres: Well, it turned out to be prescient, didn't it? I can't tell you how many people I know, especially here in Miami, where we do tend to get caught in traffic and have a long commute time. I'm sure that never happens to you in Palo Alto. Dr. Lidia Schapira: Of course not. Dr. Mikkael Sekeres: But people listen to a lot of podcasts and it's a great way to catch up on personalities and on books and on the news. So good for you. I'm so happy you took the dare and ran with it. Dr. Lidia Schapira: Yes. And the first thought I had was to make it a bit artsy. So we started, for the first couple of years of rounding up everybody we knew who was an actor or had a voice that they used for their art or trade and asked them to read the essays or poems before we had the conversation with the author. Now, we have our own voice actor, so we know what we're going to get every week, and we're not looking for people and knocking on doors and asking very busy actors to donate their time. So it has evolved, as has the writing really. So I wondered if you can reflect a little bit on how you see this section both in the journal and also the conversations we're having in this podcast change and evolve over the years. Dr. Mikkael Sekeres: Let's be honest, we're both writers, right? So as a writer, you're always looking for an outlet for your work. And there aren't a lot of outlets in medical journals. Yet there's this huge audience of doctors and nurses and pharmacists and social workers who read these journals and have this incredible experience with this deluge of humanity we see every single day. So this is an incredible thing, that Art of Oncology was even created a couple decades ago and provided this outlet for people. And what I have noticed is that people have become more daring. So let's play on the dare that you took up to even start this podcast. They've become more daring in what they're willing to write about and in how vulnerable they're willing to be in print. I've seen this in my own career, in my own writing, where 20 years ago I came out of fellowship and very cautiously started to write about some of the experiences that I had. But it was cautious and used more professional language and didn't get into some of the vulnerabilities that we face in treating patients and that we experience in ourselves and in our colleagues. But I think people have been willing to share more of themselves, particularly in the last decade. Dr. Lidia Schapira: I totally agree with you. And one of the things that I've noticed is that we have younger writers and younger authors who are now taught, even during their medical training and postgraduate work, that writing as a way of processing emotionally difficult experiences or sharing interesting thoughts or coming together as a community is really important to create the kind of community of thoughtful practitioners that we need to sustain us while we do this difficult work. So we are having more and more submissions and published work from very young colleagues, trainees. And I find it very interesting, sort of this multi-generational way of expressing the contact with very ill patients and sometimes very moving to think back on the first time you gave bad news for those of us who may have done it a hundred thousand times. Dr. Mikkael Sekeres: So I think you're spot on about this. We're getting younger authors. We're getting folks who are early career, mid career. Now, we're receiving essays from folks who are at the end of their career and want to reflect on that career. And people we wouldn't have expected would write these vulnerable essays either. I wonder if some of the pieces we're getting from younger authors stems from the fact that fellowship programs are finally paying attention to the experience of being a fellow and being a trainee. Dr. Lidia Schapira: Oh, my goodness. It was staring at them all this time. I think when you were a fellow a long time ago, you were one of the advocates of having fellows talk to one another about their experience, right? Dr. Mikkael Sekeres: You have an incredible memory. During our fellowship, we started a Balint Physician Awareness Group. So there's this movement started by the Ballint, a husband and wife team to start to get healthcare providers to reflect on their experience and share that experience with each other to build a community of support. And we started this in our fellowship. And you can imagine the initial reaction to this among the fellowship directors was, “Why do you need that? What do you think you're doing? There's no place for that.” Dr. Lidia Schapira: “And we need our time to train them on the science.” This is maybe an extra. Right? I think many of us have felt that trying to advance anything that deals with humanism or the human side of providing care is considered maybe optional. And I think you and I have been pushing against that for a long time. Dr. Mikkael Sekeres: I think that's exactly right. What I think legitimized it a little bit is we got funding for it from The Schwartz Foundation. We then actually published a study looking at it in JCO because the fellows in our program spent time at two different hospitals. So it was by design, this crossover study where half the fellows got the intervention of the Balint group and half didn't. And it turns out, lo and behold, they actually felt better and had a better experience as a fellow when they had the intervention. Dr. Lidia Schapira: Yeah. It's so interesting that we had to turn it into a randomized control trial or whatever design you picked, but you needed to fit it into the section of the journal that respected the logic and process of scientific research. But that brings me to another point, I think, that we have talked about so much, but I think it's important for us to share with listeners. And that is that the section of the journal that we've created now, it used to be When the Tumor Is Not the Target, and we've shortened the title. The Art of Oncology is not a section for papers that address research or where there is no methods and results section. It is intentionally meant to be different from the rest of the journal. Is that how you see it, too? Dr. Mikkael Sekeres: Oh, my word. Absolutely. And our reviewers occasionally will have a submission that is more of a classic article in how it's structured, and our reviewers will push against it. And sometimes we're able to get back to the author and say, could you write this in a different way, something that's more reflective of Art of Oncology? I think it's meant to be, I don't want to say a break from the way other articles are written, but maybe a different style, a different way of using your brain and reading these articles. And we've seen that they're popular. Sometimes they are the most read article, even in JCO, in a given week, which, of course, we share with each other and gloat a little bit when that happens. Dr. Lidia Schapira: Yes, and it doesn't have to be the article that made you cry. It can also be the article that made you think. That's been my intention as the editor for this section for the last 10 years. I've tried to be very intentional instead of bringing to our readership articles that delve into different parts of this lived experience of giving care. Some are moving more towards ethical conflicts. Some are moving more towards the emotional labor of the work. But some bring out different voices and different perspectives. And I'm proud to say that the submissions we get really come from all over the world. So I wonder, Mikkael, as you're entering into this role now, your decade as editor for this section and host for our podcast is how you view the editorial process. How does your team help the authors bring their best article forward? Dr. Mikkael Sekeres: I took the lead from you, and I'm not saying that just to blow wind in your sail, but you have always given feedback to authors, whether it's a request for a revision and acceptance or turning a piece down. That's been helpful, that's been thoughtful, that's been empathic. And in the end, I know that your goal has always been with these reviews, to give the author advice moving forward. I've tried to take a page out of your book by doing that as well. I go into every piece you shared with me that you do the same thing. When I get a submission, I look at it and I'm so excited about what could be there, what truth this could reveal, what angle of thinking about something that I've never thought about before. And our reviewers go into it the same way as well. These are folks who have read hundreds, if not thousands of essays. They themselves are readers. They're writers. They've had submissions accepted to Art of Oncology. They're looking for pieces that reflect a great truth that we all realize sometimes it's a great truth that no one wants to talk about, and this is the first time somebody's talking about it. Those are the best pieces. When you read it and say, “I thought the same thing,” Or, “I had the exact same experience and no one's ever talked about it before.” We're looking for good writing. We're looking for pieces that are focused on a patient. And you and I have both given talks on narrative medicine. And one of the slides I have in my talk is to remind people that the patient is the most important person in the room and to make that piece focused on the patient's experience and, of course, the writer's reaction to that experience. But in the end, it's all about our patients and their experience. And we're looking for, as you mentioned, perspectives that we haven't seen before. So we want to hear from people who are in training. We want to hear from people in different stages of their careers, people who practice in different settings, people who bring different cultural backgrounds to their own perspective on the practice of oncology. Dr. Lidia Schapira: And if I may point something out to our listeners, you are an artist in being able to bring the bedside verbatims to the page and make them live. I've always admired that in your writing, Mikkael. Can you tell us a little bit about your process for writing and how the role of the editor varies or is different from the role of the writer? Because I've learned a lot about editing, and I think the editor is an interpreter, in a way. I'm fascinated. I was brought up in a household where we spoke four languages, and I was always fascinated by trying to find the right word in a language and struggling with all of that. And I think some of my love for editing, which is different from my love for writing or reading, comes from that, from trying just to find the right word or trying to respect the voice of the author and make it even better or more artistic. Can you tell us a little bit about your process and your relationship to language and writing and editing? Dr. Mikkael Sekeres: It's great to hear you come from a family where you spoke four languages. I am an unfortunate monoglot. I'm terrible with foreign languages. But I come from a family of English majors. My dad was a journalist for the Providence Journal in Rhode island, then an editor for 10 years. My mom was an English major as well. So I always think that as parents, our job is to impart one employable skill to our kids so they don't live in our basement forever. Dr. Lidia Schapira: That's what my father thought, and that's why I'm a doctor and not a philosopher. Dr. Mikkael Sekeres: We joke that we moved to Miami, so there is no basement they can live in. But I always felt in my family, the employable skill was writing. I grew up and when I went to med school, I think, we put on this armor of the language we're learning, and we're very uncomfortable and nervous about the skills that we have. So we use this language to separate ourselves from our uncertainty around medicine. I distinctly remember at one point talking to my parents and saying something that was very complex, using medicalese. And they said to me, “Why are you talking to us like this? We're your parents. You don't have to use that language. Just use language we can understand.” And that always resonated with me. That was kind of a North Star moment for me. That's what's guided my writing. And I have so much respect for the words that my patients use. And I think that's why I try to incorporate it in my essays as well. I always try to have my patient's voice literally there in their words as a focal point. I think as an editor, we go into a piece and we want to learn something. In the end, essays either educate or entertain, and ideally both. So we want to come out of a piece, we want to be either emotionally moved or we want to learn something and hopefully both things. And if I'm reading a piece as an editor and one of those two criteria have been satisfied, then I think it's a piece that's worth giving feedback to and advising revision. But I'm curious. I want to turn this a little bit, Lidia, because you're the one who always asks the questions. Dr. Lidia Schapira: I love asking questions. Dr. Mikkael Sekeres: So I'd like to ask you a question. When did you get started as a writer and a reader? And has that interest and skill changed over the course of your career? Dr. Lidia Schapira: Yes, I must say, I've always been a reader. That's my idea of heaven is a place with an enormous amount of books and a good espresso machine, just to give you an idea. So books have always provided companionship to me. They've provided community. I'm very happy living in a world of ideas, and I love art, and I love the sound of words and beautiful words put together beautifully. So that's basically reading and thinking, to me, are very closely aligned. And I also love and come from a culture, a society where conversation was valued. And I'm very sad that we don't anymore. We don't converse in our typical academic settings because we're so busy, and our language is mostly turned into units of efficiency. So I love the idea of communicating through language. Words, spoken words, things we listen to, things we read, things we write. My relationship to writing has been very undisciplined and inconsistent. And for all the years that I was an editor for this section, I found myself sort of inhibited from writing. And from the moment that I passed the baton on to you, I've been gushing. So I'm working on a book, and hopefully it'll be the first of several. But I've sort of kept my writing very private, and I've only been able to do it when I have a lot of time and no pressure. I'm not the kind of disciplined writer who can set aside time every day to write. I just can't do that. I need to be totally empty and free and be able to disagree with myself and erase a thousand words written on a page because they're just not good enough and start again. Dr. Mikkael Sekeres: I'm fascinated by that comment that you just made. What is it about being an editor that you feel has inhibited you from writing? Dr. Lidia Schapira: I think I was just busy. I was busy, again, immersing myself in the words that I needed to respond to and in the creative process of transforming essays into their best possible publishable form. And I think that's how I've interpreted the work of editors. I have tremendous respect for editors. I now need one to help me with my own work. But I think editors play an incredible role. And I am very happy that you view this role as something that is joyful. And I know that you have the amazing talent to do it. So I'm just very happy that we've made this transition. Dr. Mikkael Sekeres: Can I suggest that you've been giving as an editor also, because I think that your guidance to authors is precious? It's so valuable. Writers are so desperate to have that kind of caring advice. And I wonder if you've devoted all of your creative juices to doing that for the past 10 years at the expense of not being able to write yourself. So I'm so thrilled that you have the opportunity now. I will be the first person to buy your book, to write a review for your book. I can't wait to read it. Dr. Lidia Schapira: We've got a blurber. So now I need a good editor and a therapist, and I'm on my way. So on that note, I think it's time for us to end this lovely conversation, although we could go on for a long time. For our listeners. I want to thank you for having listened to me all these years, and I'm delighted that Dr. Sekeres will continue this wonderful program. And I look forward to listening while I drive, while I walk, and while I just simply am. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at . And thank you Mikkael. Dr. Mikkael Sekeres: Thank you so much, Lidia. 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. so you never miss an episode and leave a rating or review. Guest Bio: Dr. Mikkael Sekeres is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami. /episode/index/show/aoopodcast/id/34534265

Did I Mess Up Today? Relief and Regret After Deciding to Hang Up My Stethoscope 12/10/2024

Did I Mess Up Today? Relief and Regret After Deciding to Hang Up My Stethoscope Listen to JCO Oncology Practice’s Art of Oncology Practice article, by Dr. John Sweetenham, ASCO Daily News Podcast host and recently retired after 40 years of practice in academic oncology. The article is followed by an interview with Sweetenham and host Dr. Lidia Schapira. Dr Sweetenham shares his reflections on his shrinking clinical comfort zone. TRANSCRIPT Narrator: By John W. Sweetenham Reflections on My Shrinking Clinical Comfort Zone Hindsight and the passage of time have made me realize how much this question began to trouble me after each clinic as my clinical time reduced to one half day per week. After 40 years in oncology, I had reached the point where I had to ask myself whether a minimal commitment to clinical cancer care was best for my patients. I decided that it was not. Reluctantly, I left the world of direct patient care behind. Despite the identity crisis that resulted from giving up the foundational bedrock of my career, I felt substantial relief that I would no longer have to ask myself that question after each clinic—I felt that I had made the decision before (hopefully) I really did mess up. Reflecting on this in the past few months has made me question whether we have devoted sufficient resources to asking the question of how much clinical time is enough to maintain the clinical skills, knowledge, and competency that our patients deserve and should expect from us. Although we can continually refresh our clinical knowledge and understanding through continuing education and maintenance of certification, we mostly rely on our own judgment of our clinical competency—few of us receive outside signals that tell us we are not as sharp as we should be. There are many reasons why we may choose to reduce our clinical commitment over the course of a career and why it may be important to us to maintain some level of practice. The spectrum of reasons extends from being truly altruistic, through being more pragmatic to those driven by career advancement and self-interest. Many of those have played into my own decisions about clinical commitment, and I will use my own story to describe my journey of changing motivation and growing (I hope) self-awareness. I entered oncology fellowship in the United Kingdom in 1984. I chose oncology as a specialty because of the unique opportunity it provided then (and now) to combine new scientific discovery and understanding of this disease with compassionate, patient-centered care, which might improve lives for patients and their caregivers. I was trained in the UK tradition, which placed an emphasis on clinical experience and clinical skills, backed up by knowledge of emerging scientific discovery and data from clinical trials. Like many others at that time, I undertook a laboratory-based research project and was inspired by the work of true physician scientists—they became role models for me, and for what I thought would be my career trajectory. Once I finished fellowship and became junior faculty with a growing clinical and clinical research practice, I quickly began to realize that to make a meaningful contribution, I would not be able to sustain a clinical and laboratory presence—I admired those who could do this, but soon decided that I would need to make a choice. I knew that my primary passion was the clinic and that I did not have the skill set to sustain a laboratory project as well—it was an easy choice, and when I left the United Kingdom for the United States, I left my physician scientist ambitions behind but felt confident in my chosen clinical career path and had no sense of loss. I experienced many examples of culture shock when I moved to the United States. One of the least expected was the attitude toward clinical practice among many of my colleagues in academic oncology centers. Many sought to minimize their clinical commitment to give more protected time for research or other professional work. I found this puzzling initially, but have since observed that this is, to some extent, a reflection of the overall institutional priorities and culture. There is often tension between the perceived need for protected time and the expectations of academic departments and health systems for clinical revenue generation. Protected time becomes a contentious issue and increasingly has become the subject of negotiation during the recruitment process. In my early years in the US system, I found this difficult to grasp—why wouldn't trained physicians want to spend as much of their time as possible doing what we were trained to do? I could understand the need to achieve a balance in commitment for those with labs, but not the desire to do the absolute minimum of clinical work. After all, I was not aware of anyone who thought that they could be competent or competitive in bench research with a half day per week commitment to it, so why would anyone think that level of time commitment would be adequate for a clinical practice, especially for those coming straight out of fellowship? Over the next few years, as I began to take on more administrative responsibilities, my perspective began to change. The earliest signs that my clinical skills might be dulling came to me while on a busy inpatient service—I was beginning to feel that I was moving out of my comfort zone—although I was comfortable with the day-to day care of these patients, I wondered whether there were nuances to their care that I was missing. I had also started to realize that I was taking more time to make decisions than I had earlier in my career and started to wonder whether I was losing my edge. I decided it was time to leave the inpatient service. I continued with 2 full days in clinic for several years, which fitted well with my administrative commitment, and I felt fully back in my comfort zone and working at the top of my game although I no longer felt like quite the same, fully rounded clinician. The next step in my career took me to a new leadership position, a reduced clinical commitment of 1 day per week, and a growing sense of unease as to whether this was adequate to stay sharp clinically. I was still gaining great enjoyment and satisfaction from taking care of patients, and I also felt that as a physician leader, clinical practice earned me credibility among my physician colleagues—I could still relate to the issues they faced each day in taking care of patients with cancer. I was also strongly influenced by a former colleague in one of my previous positions who advised me to never give up the day job. That said, there were warning signs that I was becoming an administrator first and a clinician second—I was spending less time reading journals, my time at conferences was being taken up more with meetings outside of the scientific sessions, my publication rate was falling, and the speaker invitations were slowing down. I had to face the reality that my days as a KOL in the lymphoma world were numbered, and I should probably adjust my focus fully to my administrative/leadership role. As I made the decision to drop to a half-day clinic per week, I realized that this marked the most significant step in my shrinking clinical role. I became increasingly conflicted about this level of clinical practice. It was much more compatible with my administrative workload, but less satisfying for me as a physician. I began to feel like a visitor in the clinic and was able to sustain my practice only because of the excellent backup from the clinic nurses and advanced practice providers and the support of my physician colleagues. My level of engagement in the development of new trials was diminishing, and I was happy to leave this role to our excellent junior faculty. As with my inpatient experience, I started to feel as though my comfort zone was shrinking once again—some of my faculty colleagues were developing particular expertise in certain lymphoma subtypes, and I was happy that they were providing care for those groups, leaving me to focus on those diseases where I still felt I had maintained my expertise. Looking back, I think it was the credibility factor which persuaded me to continue with a minimal clinical commitment for as long as I did—I was concerned that giving up completely would result in a loss of respect from clinical colleagues. Subsequent experience confirmed that this was true. When I ultimately decided to hang up my stethoscope, I felt some relief that I had resolved my own internal conflict, but there is no question that it diminished the perception of me as a physician leader among my clinical colleagues. There is little published literature on the issue of clinical commitment and skills in oncology. In his wonderful perspective in the New England Journal of Medicine, Dr David Weinstock1 describes his experience of withdrawing from clinical practice and compares this process with bereavement. His account of this process certainly resonates with me although my feelings on stepping down were a mixture of regret and relief. Recognizing that oncology practice remains, to some extent, an art, it is difficult to measure what makes any of us competent, compassionate, and effective oncologists. We have to rely on our own intuition to tell us when we are functioning at our peak and when we may be starting to lose our edge—it is unlikely that anyone else is going to tell us unless there is an egregious error. For me, one half day per week in clinic proved to be insufficient for me to feel fully engaged, truly part of a care team, and fully up to date. Giving up was the right decision for me and my patients, despite the loss of credibility with my colleagues. There was a sense of loss with each stage in the process of my dwindling clinical commitment, but this was offset by the knowledge that I had not waited too long to make changes. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today, we are joined by Dr. John Sweetenham, whom you may recognize as the host of the ASCO Daily News podcast. Dr. Sweetenham has recently retired or partly retired after 40 years of practice in academic oncology, and in this episode he'll be discussing his Art of Oncology Practice article, “Did I Mess Up Today?” At the time of this recording, our guest has no disclosures. John, welcome to our podcast and thank you for joining us today. Dr. John Sweetenham: Thank you for having me. Dr. Lidia Schapira: I'd like to start just by asking a little bit about your process and perhaps why you wrote this. Was this inspired sort of by a conversation? Did this just gush out of you when you saw your last patient? Tell us a little bit about the story of this article. Dr. John Sweetenham: Yeah, it didn't really gush out of me. In fact, I originally started to write this probably back eight or nine months ago, and I wrote a couple of paragraphs and then I'm not quite sure what happened. I didn't think it was very good. Life took over, other things were going on, and then I revisited it about a month to six weeks ago. So the process has been actually fairly slow in terms of putting this down on paper, but it wasn't really the result of a conversation. A couple of things spurred me on to do it. The first was the most obvious one, that it really did occur to me, particularly as I hung up my stethoscope and walked away completely from clinical practice, that I did have some sense of relief. Because I didn't have that nagging voice in the back of my head saying to me anymore, “I just want to make sure that I did everything right today.” And so I think that was a part of it. And then it was also partly inspired by something which I read a few years back now. And I actually referenced it in my article, which was that wonderful article by Dr. David Weinstock, who had a somewhat different but parallel experience. And that had really resonated with me. And particularly over the last two or three years of my clinical career, like I said, I began to feel uneasy. And so it wasn't really a kind of blinding flash or anything. It was really just over time, wanting to get it down on paper because I felt that I can't be the only person who feels this way. Dr. Lidia Schapira: John, let's talk a little bit about some of the themes that I found so compelling in your article. The first is your experience of how we value clinical activity in the United States. And you contrast that very much with your experience in the UK. You talk about having started your fellowship in oncology in the ‘80s in the UK and then transitioning to the academic culture in the US. Can you reflect a little bit on that for us, both how it was then and how it is now? Dr. John Sweetenham: I preface that by saying it is 25 years since I practiced in the UK, so I don't really know whether it's now as it was back then. As I mentioned in that article, I think at the time that I went through medical school and undertook my fellowship, the training at that time and the culture was very, very clinically based. I always remember the fact that we were taught very heavily, “Don't rely on tests. Tests are confirmatory. You've got to be a good diagnostician. You have to understand, listen to the patient, he'll tell you the diagnosis,” and so on and so forth. So that the grounding, particularly during med school and early fellowship, was very much based on a solid being as a clinician. Now, in 2024, I think, that's actually a little unrealistic, we don't do it quite that way anymore. And for me, the contrast when I moved to the US was not so much in terms of clinical skills, because I think that clinical skills were very comparable. I don't think that's really a difference. I would say that clinical skills and clinical time are not always consistently valued as highly from one institution to the other. And I think it is an institutional, cultural thing. I've certainly worked in one or two places where there is a very, very strong commitment to clinical work and it is very highly valued. And I've worked in one or two places where that's less so. There isn't really a right or wrong about that. I think different places have different priorities. But I did find certainly when I moved and was probably somewhat naive moving into the US system because I didn't really realize what I was coming to, and there were definite culture shock elements of that. But at that time, in 2000, when I made the transition, I would say that at that time, overall, I think that clinical medicine was probably more highly valued in the UK than it was in the US or clinical skills. I think that's changed now, almost certainly. Dr. Lidia Schapira: Interesting that you referred to as a clinical culture, a term that I will adopt going forward. But let's talk a little bit about this process of having your time basically devoted more to administrative governance, leadership issues or tasks, and going from being comfortable in the inpatient setting to giving that up and then going to outpatient two days a week, one day a week, half a day a week. And then this moment when you say, “I just can't do this,” is there, you think, a point, a threshold? And how would we know where to set that, to say that below that threshold, in terms of volume and experience, one loses competence and skills? Dr. John Sweetenham: I certainly don't have the answer. And I thought really hard about this and how could we improve on this. And is there some way that we would be able to assess this? And the thing that I thought back to was that back in the early 2000s, when I first moved to the US. At that time, for ECFMG purposes, I had to do something that was called the Clinical Skills Assessment, where you went to Philadelphia and to the ECFMG offices and you saw actor patients and you had to do three or four of these and someone had a camera in the room and so they were watching and assessing your clinical skills. And honestly, I slightly hesitate to say this, but it was probably pretty meaningless. I can't imagine my clinical skills could have been judged in that way. I think it's made me believe that there probably isn't an outside way of doing this. I think it's down to all of us individually and our internal compass. And I think that what it requires is for, certainly in my case, just to be aware. I think it's a self awareness thing. Dare I say it, you have to recognize as you get a little older you probably get a little less sharp than you were, and there are signals if you're prepared to listen to them. I remember on the inpatient service, and I used to love the inpatient service. I love teaching the house staff and so on. It was really good fun. But then I got to a point where I was on a very, very busy hem malignancies inpatient service and started to have to think about which antibiotics to use just a little bit longer than I had done in the past. And it was little things like that. I was not so familiar with the trials that some of these patients could be able to get on when they were inpatient. And so little signals like that started to ring in my ear and tell me, “Well, if you're taking longer and if you're thinking harder, then maybe it's time to move on from this.” And I would say the two most difficult things for me to do overall were obviously giving up clinical work entirely. But before that, giving up the inpatient service was a big deal because I never really felt fully rounded as an oncologist after that. As the hem malignancies docked back 15 years ago, a very big component of the care was still inpatient, and I wasn't doing that part of my patient care anymore. And that was kind of a big change. Dr. Lidia Schapira: So many things to follow up on. Let me try to take them apart. I'm hearing also two different themes here. One is the competence issue as it relates to aging. And there have been some recent articles about that, about whether or not we actually should require that physicians above a certain age demonstrate their competence. And this is, I think, an ongoing theme in academic medicine. But the other that I hear relates to volume. And even if you are sort of at the top of your game and very young, if you're only in the clinic half a day a week, you can't possibly have the clinical experience that just comes from seeing a lot of patients. Can you help us think through the difference between these two sort of running threads that both, I think, contribute to the idea of whether or not one is competent as an expert in a field? Dr. John Sweetenham: I think that the discussion around age and clinical competence is a very interesting one. I just don't know how you measure it other than your own internal system for judging that. I'm not sure how you would ever manage that. I suppose in some of the more procedure based specialties, maybe there would be skill based ways that you could do this, but otherwise, I just don't know. And I certainly wouldn't want to ever be in a position of making a judgment based on age on whether somebody should or shouldn't be working. I just felt that for me, it was the right time. In terms of this issue of volume and time in the clinic, I actually do feel that there are some important messages there that maybe we need to think about. And I say this with total respect, but I think straight out of fellowship, a half a day in a clinic, to me doesn't feel like it's going to give that individual the experience they need for 30 years of clinical practice. I may be wrong about that. I'm sure there are exceptions to that and highly competent individuals who can do that. But I worry that someone who starts out their clinical oncology career with a minimal clinical commitment, I worry as to... /episode/index/show/aoopodcast/id/34370295

Episteme: Knowing Your Patient 11/26/2024

Episteme: Knowing Your Patient Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "” by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease. TRANSCRIPT Narrator: , by Michael J. Slade, MD, MSCI I know you know, must know. The tides have woken you night after night after night, borrowed blood flowing in and now out, unaided by your dwindling marrow. You must know your story is read and written in a perfecta tense. You must know the end somewhere deep in your empty bones. Still, you speak of summers, of fish caught or lost beneath the calm surface of a distant lake. “There’s nothing to do in December,” you say, skin pale in the cool light leaking from the door. It’s late now, deep in the evening and my knees ache as I nod and wonder about a different world where you were not you and this was all decided months ago. “Day by day,” I mutter and shuffle to my next door, leaving you alone to wait on the cataclysm, on that night when the blood of strangers runs wild and catches your breath, that night in the ICU, where they wait, tube in hand as you sweat and shake, where I still promise to care for you knowing, knowing you will never wake again. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, “Episteme.” Our guest’s disclosures will be linked in the transcript. Mike, welcome to our podcast and thank you for joining us. Dr. Michael Slade: Thank you, Lidia. It's great to be here. Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write? Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers. Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone. Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works. Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients’? I assume the “I” is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of “I,” but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well? Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, “Oh, the chances of you responding,” “The chances of you surviving,” “The chances of you being cured,” it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing. Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice. Dr. Michael Slade” When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, “Am I going to be cured?” “Am I going to have this side effect?” “Am I going to make it out of the hospital?” And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful. Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know. Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, “I have seen this story play out so many times, and I know things are not going well. I know how this is going to end.” But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap. Dr. Lidia Schapira: And you say it very clearly. You say, “You must know your story is read and written in the perfect tense.” It's almost like you're shouting it here, right? Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, “What are you talking about?” I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end. Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, “they are coming up for air.” They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right? Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, “Oh, I feel fine. Why do I need chemo after surgery?” Or, “Oh, I feel fine. Why do I need a bone marrow transplant?” And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, “Oh, man. If only we had done things a little bit differently.” I acknowledge that we just can't align our views of the world, but still at the same time saying, “Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process.” So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this. Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, “it's the evening and my knees ache,” and then you say “I shuffle,” suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms. Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, “Hey, I had a patient with a bad outcome when they got X,Y,Z.” Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, “Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?” Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem. Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right? Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this. Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an ‘us’ that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there. And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word ‘cataclysmic’, which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the “They,” which isn't you or your team, it's the ‘they’ are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while ‘they’ are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey? Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard. Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the ‘knowing’ and then italicize it at the end, just to add another dimension of emphasis there? Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it. Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that. Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is... /episode/index/show/aoopodcast/id/34159565

The Holiday Card: Processing the Unexpected Loss of a Patient 10/22/2024

The Holiday Card: Processing the Unexpected Loss of a Patient Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, by Dr. Laura Vater, who is a gastrointestinal oncologist at Indiana University Simon Comprehensive Cancer Center. The article is followed by an interview with Vater and host Dr. Lidia Schapira. Dr Vater shares how she processed the unexpected loss of a patient and how a colleague unknowingly helped her cope. TRANSCRIPT Narrator: , by Laura B. Vater, MD, MPH I kept her family holiday card tucked into the side pocket of my black briefcase for a year and 3 months after she died. I carried it back and forth to the office each day, never viewing it but with a deep awareness of its presence. It was a transitional object, my therapist said. I took it with me for reasons that were not logical or even fully clear to me—perhaps part of me thought if I kept it in that dark space, then maybe her death was not real, after all. Death is not new to me. Much of my work as a GI oncologist is palliating my patient’s symptoms and helping them navigate the end of life. But she was not supposed to die. She was a vibrant, kind person, and I was treating her for a potentially curable condition. A team was assembled, a tumor board discussion was held, and a comprehensive plan was derived from published clinical trials and national guidelines. She was on track to finish chemotherapy and recover. She was meant to have decades more with her husband and teenage children. This is what gnawed at me—death out of place. It was during a nap on a normal day, months into her treatment course. There were no proceeding symptoms or perceptible changes. The autopsy showed no apparent cause of death. Amid it all, her family was kind and expressed thanks. “She was grateful for your investment in her,” they said. “She felt cared for.” Rechanneling my distress, I rechecked the dose of every chemotherapy agent she received, along with each supportive medication. It was all per protocol, verified by pharmacy teams, and infused without adverse reactions. Yet, the questions remained. I continued to carry the weight of responsibility, along with the holiday card. In clinic the next week, I met a patient with the same diagnosis. Again, there was a multidisciplinary discussion, and we planned to give him the same drug regimen. After reviewing the more common side effects with him, a lump formed in my throat. “In exceedingly rare cases,” I said, “cancer treatment may lead to death.” My eyes began to water, and I pushed back the tears to answer his remaining questions. He completed the treatment and, over time, had no sign of recurrence. Many more patients followed with the same diagnosis and positive outcomes. And the card remained in the bag. Over a year later, a senior mentor and I had a shared patient with two malignancies. We carefully discussed and managed her care, but she unfortunately had a rapid clinical decline and was admitted to the intensive care unit. Her family elected for comfort care, and she died soon after. We saw each other in the hallway the following week. “Just awful, wasn’t it?” he said. I exhaled and nodded. Perhaps he could see the invisible burden I carried, and he sighed. “We do the best we can with the data we have, but we’re treating terrible diseases. Sometimes, bad things happen that we cannot predict or prevent. We did everything we could for her.” Something deep inside me released in that moment. Often, mentors do not realize how healing their words can be—even brief ones shared in passing on a busy clinical day. Eventually, on a quiet afternoon at home, these words gave me the courage to reach into the side pocket of my work bag and remove the white envelope. My name was written and underlined in royal blue ink. Slowly opening the card, I saw once again a snapshot of life: a beaming family with arms around each other amid a blanket of paradise-green trees. They were huddled so close that there was no space between them. I imagined how she might have felt at that moment, the warmth of her children pressing on either side and the joy spreading across her face. Perhaps someone had told a joke just moments before. My face crumpled, and I began to sob. How badly I wanted to cure her, to restore her to health, to see her year after year for follow-up, and hear about her children’s unfolding lives. And now, they were navigating the world without their mother. One of the most challenging aspects of practicing oncology is the uncertainty of it all. Even when the variables are the same—diagnosis, staging, and treatment—the outcomes are unpredictable. We, of course, know and rationally accept this as physicians. It is the nature of our work to care for diverse and varied human beings. But even so, when devastation occurs unexpectedly and without apparent reason, the toll of grief can be crushing. It is often the support we receive from one another that helps us heal. We must remind our mentees that despite our greatest efforts in a field of extensive data, unpredictable outcomes still happen. We will have questions that may never have answers. Our minds may try to cope with this randomness in ways that are not always logical. Our grief may linger like an open wound for months or even years to come. Caring words shaped by time and experience can help us process, cope, and continue on. I am not typically a person who holds onto holiday cards, but I have a tray in the bottom drawer of my home desk with about a dozen meaningful ones. This card now lives among them. I still often think about my patient and her family, and I even look at the card from time to time. However, it is no longer in that liminal space within the side compartment of my bag. It has become integrated into my life and remains part of me—her story forever interwoven with my own. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Laura Vater, a gastrointestinal oncologist at the Indiana University Simon Comprehensive Cancer center. In this episode, we'll be discussing her Art of Oncology article, “The Holiday Card.” Our guest disclosures will be linked in the transcript. Laura, welcome to our podcast, and thank you for joining us. Dr. Laura Vater: Hi, Lidia. Thank you so much for having me today. Dr. Lidia Schapira: It's our pleasure. So let's start by just asking you a general question that I think our authors like to share with listeners. And that is, why do you write? When do you write? When did you start writing? Dr. Laura Vater: Yeah, so I started writing, actually, during my first few years of medical school as a way to process and cope through many of the challenges and the difficulties and the emotional ups and downs of training. When I was a third year medical student, I was pregnant, and I was rotating through the high risk maternal fetal medicine rotation, and I witnessed a stillborn child, and that child was about the same gestational age that I was pregnant at that time. And I thought about that family. Had they picked out a crib, and had they chosen the color of paint for their walls? And anticipating this life and having it end in this just grief. And participating in that ritual of loss really evoked a deep emotional chord in me that I remember walking out right after that shift was about 2:00 in the morning and it was freezing cold in February. As I was walking in the parking lot, I just started crying. And I thought, I need a way to process and cope with the challenges that I'm witnessing in my training that served me very well. I always journaled through medical school and residency as an internal medicine resident, as an oncology fellow, and now during my gastrointestinal oncology practice. And sometimes I go a week or two without journaling, sometimes I'm writing every day and it kind of depends on the week, but it is truly something that helps me process and cope. Dr. Lidia Schapira: So it's good to know that you are so comfortable with words and writing as a way of processing. But I'm curious to have you address the next layer, which is then to go back and turn it into a piece of art, turn it into a piece of writing that you want to share with others. Can you talk a little bit about that process and the role that's played in your professional development? Dr. Laura Vater: For a long time, writing was something very informal in my life, and then I started really enjoying spending time writing, and so I started participating in different writing groups. I participate in a Gold Humanism Writing Group with Judith Hannan. I did the Fall Narrative Medicine Workshop at Columbia, part of the Pegasus Physician Writers at Stanford University, where we meet every month to go over our writing. We've created a Writing for Wellness program on campus. And so this went from something very informal then something that I really was drawn to and loved, and that, really working with my peers, participating in writing prompts, reading both fiction, medical related nonfiction, and narrative stories, that's really crafted my ability as a writer to turn something that's just a reflection into something more, into something that I hope will help others. I think we all feel that way, right? If we share something that is perhaps a bit vulnerable, sometimes shrouded in shame, that perhaps it might help another trainee or early career physician through what they're going through. Dr. Lidia Schapira: Well, maybe you're the best person that I can think of to answer this question, but tell me a little bit about how you see this narrative in oncology and narrative medicine applied to practice to training. Dr. Laura Vater: I think that it's something that is necessary. It's something that helps me to pause, to slow down, to see the humanity in my patients, and also to hold on to my own humanity. And so it's truly something that allows me to continue to practice, and I hope to practice well through paying attention to the nuances of my patients and their stories. Sometimes, I'll be sitting in a room with a person, and I'll notice the color of their glasses, or I will be moved by something, a direct quote that they say. And I think that both reading narrative essays and writing helps me to slow down and to pay more attention. I think it helps, hopefully helps me to be a better clinician, but also allows me to have more meaning in what I do. Dr. Lidia Schapira: Yeah, perhaps even we can use the word ‘joy’. It's more interesting if you're curious and open and you see these things. Can I ask you how you deal with the emotional labor and the emotional investment in your patients? You seem to be somebody who has no difficulty engaging at a very deep level. But how do you work that through and fit it into the rest of your life? Dr. Laura Vater: You know, it's interesting that you asked me that question, because over the last two weeks, that has been the question in my mind that I've been coming back to. I've been covering for a partner that's been out of town and another partner on maternity leave. And so I found that my clinical work has been a bit busier and that I've hit that point in my early career where I know my patients very well. But as a gastrointestinal oncologist, many of my patients, I'm walking through devastating recurrences of what we thought was curable pancreatic cancer is now stage 4. So I've found that even over the last two weeks, I had a few days last week where I came home after the clinic and I had nothing left in the tank. I have my husband and my eight year old daughter, and I just had a few days last week where I actually asked myself, I said, “How am I going to continue to do this work, both clinically, physically, intellectually, and emotionally exhausting days, right?” Our clinics can be all of those. Our clinical work can be all of those. And so I actually took some time over the weekend. I've been intentional for a very long time about how can I connect with patients deeply to know them as human beings, help them to walk through really awful things, but then be able to have both health and wellbeing and joy in my own life. Because I think we deserve that. We deserve the health that we strive so hard to give to others. It's something that I'm still processing through. Things that help me cope? Of course, I regularly go to therapy. I think that really helps because I have a lot of patients who do pass from their cancers. And I also write. Writing is a tool that I come to, and sometimes it's even writing, “I'm emotionally exhausted today. And this and this, and this happened.” And sometimes it's being in nature, sometimes it's listening to music, sometimes it's just doing nothing. Reading a book I've read before or watching a show I've read before. But I keep coming back to this idea of, there's this thought of we all develop some emotional calluses. The things that evoke emotion in us when we are first learning medicine, when we're medical students, are not the same things that may evoke emotion in us as we progress through our careers. For me now, it's often a person that I have a deep connection with that I've known over time. And in that moment when something really devastating happens, I'm finding that that is probably the most emotionally difficult thing, especially if that person is particularly young or has young children. And so I'm increasingly trying to find ways to cope with that, because we need to do that to protect our longevity, to be able to do this work. Dr. Lidia Schapira: Yeah. And to stay fresh for our patients as well. I think that we are a culture that is immersed in grief, and we volunteered for this work. But I think we volunteered perhaps when we didn't quite understand all of the areas that this grief and the sorrow and this immersion into that culture can really deeply penetrate. It sounds like you have used all of the possible resources, and you're incredibly open and frank about it. I wonder if in your institution, people talk about it as frankly as you do. Dr. Laura Vater: I have had mentors who have talked with me. I have the benefit of being trained through residency and fellowship at the same institution where I work. So I've known some of my mentors for almost 10 years, more than that. And so sometimes I will ask them, “How do you cope with this?” Some of my peers are incredibly funny and, not in a- sometimes sarcastic, yes, but not in a demeaning way towards patients, but they just bring a lightness to the clinic. Especially in the world of gastrointestinal oncology, where a mentor once told me that eight out of ten of my patients will not live long term. And so a lot of what I do is palliative care and end of life care. And I think we knew that. Like you said, we know what we sign up for. But sometimes the reality of that can be much, much different than that. I do reach out to my mentors. I try not to burden them. But sometimes if we're in a clinic and I notice that we have a down moment, I might say, “Wow, I'm dealing with this.” And they'll sometimes share an experience from their early career or even recent and I think that's healing. There is something about being vulnerable with your peers, whether that's through writing and formally publishing a story and reading a story of someone you've never met, or even in those moments in the clinic or in the hospital where you share something with your residency team or your colleague that can be very healing. Dr. Lidia Schapira: And even being able to open yourself up and be vulnerable together, or cry with somebody, or cry reading somebody else's story. There are some essays that have been published in The Art of Oncology that make me cry every single time I read them. And it's a way of feeling that I'm sort of in solidarity with a colleague's pain, or that I feel sort of understood, or that I have a community of peers, people who are also drawn to these very tense, emotionally intense situations, but find meaning in it and find meaning and keep going back to it on a very intentional basis. And I think you're probably one of the club. So let's talk a little bit about your essay, this beautiful essay about this holiday card that you kept tucked in your briefcase until it was the right moment when you could process something that was deeply, deeply painful to you because it was a death that was out of place, that wasn't supposed to happen. Tell us a little bit about how this became a story for you. Dr. Laura Vater: I still remember the moment that I woke up to an email from this patient's husband, unfolding that this patient had unexpectedly died the night before. And that was the first email that I read that morning. It was early, and I remember pacing in my office until it was late enough that I could call him. And, of course, then came all of the questions and all of the uncertainty and unfortunately, without answers ever being found. And just like before, when I was a medical student, I needed somewhere for this to go. I needed somewhere for this to go. And so this became even that day, journaling about this experience, in a way, of course, that protected my patient's identity. And as things unfolded over the next few months, I kind of came back to the same word document. And just anything that came into my mind as I was processing through this went there because I knew it needed a safe place to go. And then months later, this was something I talked about through therapy over many, many months, actually, and then eventually to this encounter I had with this mentor who provided very healing words in a moment when he had no idea that I was processing all of this about a different patient. And how that eventually led me to be able to pull the card from my bag and really grieve, really allow myself to grieve in that moment. You don't stop grieving, but it helps you to find a healthy way to process through something very difficult and be able to cope and continue on and hopefully share with others that these things we go through in medicine, we're not isolated in our experience. You're not alone in what you go through when something like this happens early in your career. These are normal things that you're going to think, and it may take months or even years to process through. Dr. Lidia Schapira: Yeah, I think the healing intention of your mentor's words or of a senior colleague or somebody just willing to sort of stand with you or be with you and share that is something that is so incredibly valuable. Maybe some of our listeners can think of moments where somebody has been there for them or where they have been there for somebody else. Laura, I think that there's one or two books there hidden in your files. Maybe that's next. I mean, just the evolution of the process and the formation of your professional identity, your clinical persona, and the intention and attention you bring to the work. Is there a book in the making? Dr. Laura Vater: Thank you, Lidia. That's very kind of you. I'm hopeful that at some point there may be a nonfiction book. I didn't share this with you yet, but I also write fiction. I've actually completed one novel, and I'm working on my second novel. Writing has become something that I never anticipated myself spending much of my time doing in my non clinical space, but much of what my fiction writing is really about the mental health of clinicians and well being, and also many of these challenges that we face. And so hopefully more to come in the next few years with those, yes. Dr. Lidia Schapira: Yeah. I look forward to another... /episode/index/show/aoopodcast/id/33517092

Rain Talk: Finding Words of Comfort at the Bedside 09/30/2024

Rain Talk: Finding Words of Comfort at the Bedside Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "” by Dr. Karl Lorenz, who is a palliative care and primary care physician and Professor of Medicine at Stanford University. The poem is followed by an interview with Lorenz and host Dr. Lidia Schapira. TRANSCRIPT Narrator: , by Karl A. Lorenz, MD, MSHS Rain splattering, a cacophony of glassy dollops plopping, sliding, colliding, crashing, plashing melted pearls. Drops careening, onto the ground now streaming, seeking, trickling, slowing, flowing into a rill of connections. Water nourishing blades of grass becomes a field of forage, or the smallest sprout of a redwood fairy circle. Life springs forth from the pitter patter, as words too, joined in thoughts, converge, merge, spill, flow into action. You lay cancerous, stoically shrouded. I stood frozen, purged of words, anxious amid the pulse, beep, thrum, dry rustle of nurses’ coming and going. A stiff-coated doctor fractured the quiet— “I wish things were different.” Her words fell stinging. Fighting soul ache, I gripped your shoulder. Grimacing, muffling sobs, as gasps, a gurgling cry, erupted into a torrent of tears clouding sight. Reaching, we grasped hand over wrist over hand. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Karl Lorenz, a palliative care and primary care physician and a Professor of Medicine at Stanford University. In this episode, we will be discussing his Art of Oncology poem “Rain Talk”. At the time of this recording, our guest has no disclosures. Karl, welcome to our podcast, and thank you for joining us. Dr. Karl Lorenz: Thank you for inviting me. It's such a pleasure. Dr. Lidia Schapira: I'd like to start by asking you a broad question about the role of literature and poetry in your career as a physician, educator, and palliative care physician. Tell us a little bit about the history and trajectory of your participation in the arts. Dr. Karl Lorenz: Yeah, thank you. Well, arts have had varied expressions in my life. I was a musician for many years, and I'd like to mention that because there's so many similarities between the types of art and overlap, and I think, what they teach us and how they engage us. But I was an instrumental musician for a long time, and then actually I studied opera and sang choral music in Los Angeles, which was really wonderful. I became a writer, I guess at some point. I was an English major as an undergrad. And the funny thing is I was an English major because I thought, “Oh, you know, I want to be a doctor. I'm not going to get to do this again.” And of course, that turned out not to be true, but it also was a portal, I think, into the emotional and meaning based motivations that I had for entering medicine anyway, which is an interesting place to start, right? And thinking about what drives us toward medicine, but also what sustains us. And in the time after entering medical school, I've had a bit of a drought with regard to writing. I wish that I had had more mentoring when I was actually studying medicine and training, but you're just scrambling to live during those years. Afterwards however, those experiences were so powerful that I did find myself scribbling from time to time, not necessarily constructively. And over the years, I learned that maybe I could do a little bit more with that. Dr. Lidia Schapira: So tell us a little bit about the origin of this beautiful poem. Is it something that you scribbled in response to a particular event and then came back to months or years later? How does this emerge? Dr. Karl Lorenz: So I've always aspired, or at least in recent years, especially aspired, to be more of a writer. Writing is such a craft, but for me, because I haven't treated it as such, I find myself writing under circumstances that are more emotional or spontaneous. I don't say that with any pride. It's just the truth. I think those things are a font of inspiration for writers in general, but certainly it's also a craft. So for me, I was standing on the porch of our house in North Carolina in the middle of an incredible downpour. But it was atypical in that the sun was shining at the same time, and it was such a beautiful sight. I found myself taking pictures of the water dripping off of the bushes and the eaves of the house above a lake. And just the emotions sort of welled up in me, and I wanted to capture that. So I started writing, and this poem sort of spilled out, not in this form, actually, it was quite a bit different, but I was capturing the sensory experience of standing in that rainstorm protected under the porch. And that's actually where some of the onomatopoeia comes from. The words and their collision, at least in the first stanza, were very much about what I was experiencing standing under that porch in the rain. Dr. Lidia Schapira: They're very powerful, and rain is such an amazing metaphor. So before having me tell you what this said to me as a reader, why don't I go and ask you about bringing rain and water as a metaphor into what seems to me, reading this, a very intimate experience at the bedside, where you, the narrator, or where the narrator is really the loved one of the patient lying on the bed. Tell me, did I get that sort of right? Dr. Karl Lorenz: I'm sure you've had many of those experiences, Lidia. And, yeah, the rain is a good invitation for that, right? It does bring life. I think that was part of the emotion I was experiencing into the eaves just to see it coming off of those green leaves on those plants or just that particular place where this cabin sits is actually technically a rainforest, western North Carolina, up in the Appalachians. And so it's just, it's lush, it's fecund, if I could use that word. It's bursting with life all the time. And so that conjunction is really so much what the metaphor was about for me at the time. And then the sounds themselves are physically confluent. And so I think that's where language emerged as the vehicle for metaphor, because for me, those things have been so much characteristics of conversation and communication. Dr. Lidia Schapira: To go back to rain as water, I mean, we think of water as something that just flows through our fingers. And then you contrast that with a tempo, the force, the splashing, the colliding of the rain droplets. But it's all very life affirming. And again, I want to contrast that with what you're telling us later, which is water sort of as tears emerging in response to something that clearly is very devastating for the narrator and brings forth and evokes the grief about the anticipated loss. Tell us about mixing these things together. Again, I'm just filtering through my imagination as a reader, which is something that poetry gifts us, right? It helps us just create in our own minds the scene. But I wonder if you, as the poet, can tell us what you intended. Dr. Karl Lorenz: I think those tears are a sign of pain, but aren't they also life giving? I mean, it's when we acknowledge loss that it becomes real, and then we can do something about it. And I guess as a palliative care doctor, that's always the place that I want to take patients to, not because I want them to lose. They're not going to lose because of me. It's actually when we acknowledge loss that we win in a sense, because then we can respond in a way that is life giving out of that loss, which we can't avoid most of the time. Sometimes we can, and we make wrong judgments about that. But many times I see it work the other way, that we don't come to terms with loss. Then we miss those opportunities to express love, to experience forgiveness, to build or renew, invigorate relationships, to make memories, to leave legacy, etc. And so those tears really are life giving in the sense that they are a place of acknowledgement where that kind of life begins. Dr. Lidia Schapira: I wonder also a little bit about your perspective here as a narrator. I see you more as the doctor who is at the bedside empathically saying, “I wish things were different.” And yet here the narrator is not the doctor. So it's not seen through the eyes or the lens of the palliative care clinician or the oncologist or critical care doctor, that it is from the person at the side of, or the loved one of the patient who is on the bed stoically shrouded, as you say. Tell us a little bit more about your choice of that perspective for your narrator here. Dr. Karl Lorenz: Oh, that's interesting. I don't know that I've thought about that myself. I guess I've had losses in my own life. And that's a really interesting point that you make. I guess maybe in writing the poem, I saw myself as kind of standing in the corner of the room with somebody that I love. No, that's interesting. I don't think it was conscious, actually, until you asked that question that I saw myself in the room as a narrator. I suppose it comes because of the fact that this is a poem that's rooted in personal experience. Yeah, I have been in the doctor's role many times. I've also been in the family role. And so I have seen it both ways. Dr. Lidia Schapira: And I would say that to me as a reader, it also was an active empathic imagination, because one of the things that empathy involves is sort of really taking the perspective, imagining we are in somebody else's shoes. So here I thought it was very beautiful when you talk about soul ache, fighting soul ache, I gripped your shoulder, and then it is the grasp hand over wrist over hand. So there's the visual of the bodies coming together in an embrace. Was that based on a scene you imagined, or again, did it just kind of pour out of you almost like the rain poured onto the porch on that day? Dr. Karl Lorenz: I'm a very touching person in the sense of I hug, I grasp, I hold. Touch has always been a tool that we use in medicine. I think it's one that we should be both cautious about, but also not overly cautious about. I think it's just a human expression and it's important, right? And so I have been touched physically in ways that are so profound and meaningful, and I think sometimes I have given touch in a way that is also in that regard. And so it's really just a human experience. Touch. Yeah. I guess this poem is about these different ways that we make those profound connections. It's a different form of communication. Dr. Lidia Schapira: It's an incredibly sensory poem. At least it was for me, because between the touch at the end and the last stanza and the sound, you really are engaging the reader in incredibly profound ways. There's a lot of vitality for me in this poem. It's just beautiful. And again, the sound of the rain that I think of as water, an element that flows, but producing such a crashing, loud noise. And then this encounter in what may be an ICU or a hospital ward. I mean, it clearly is a medicalized setting, right. With so much drama, it is really very beautiful. Tell me a little bit about how you plan to use this poem in your art as a clinician, as a teacher of young clinicians, or perhaps as a colleague. I find this very beautiful piece, and I wonder what your intended use is. Dr. Karl Lorenz: Oh, boy, that's a great question. The funny thing is, I think I have used art and poetry and film in medical teaching in the past. Now so much of what I do is more cerebral, health services research. Of course, I still do clinical teaching. We find ourselves so busy and distracted. I would love to use this in teaching. I haven't actually thought about using my own poetry or writings in teaching, but yeah, this is probably a good one to try that with. I love Akira Kurosawa. I've used Kurosawa films about perspective and actually culture and its role in medicine. And I definitely have toyed with a lot of these modalities, but using my own art or poetry in this case, that's sort of scary. I guess I could do it. Dr. Lidia Schapira: I think you can. And I have a final question, which I feel compelled to ask as a host for this particular podcast, and that is that once you had this poem and decided to share it with the world and publish it, why did you choose an oncology readership for your poem? Can you talk a little bit more about why this is perhaps important to put in an oncology journal that has built its reputation on delivering sort of the best science in the field? I certainly have been outspoken about the importance of having this sort of little space for the soul of our colleagues and our readers and our investigators. But I wonder if it was intentional that you said, “This is something either I'm gifting this to you guys,” or “This is something that you need. You need to remember all of the tears and the love and the soul searching that accompanies being that patient in the bed.” Dr. Karl Lorenz: Well, I love JCO and the oncology community and how my colleagues are working to refine the science and the excellence of clinical care. Yes, there is a science of the soul and a science of communication and a science of caring, and I think our patients want us to practice in an elevated way across all these dimensions of what they need. And I think that's maybe the reminder or the embrace. We can't do one without the other. And I do mean that we shouldn't do the art without the science or the science without the art. And so I love that marriage about medicine, and I love that marriage about the practice of oncology. What better place for it to be? A poem that captures that in the spirit of one of the hardest moments in our encounter with patients should go in a place where it's understood. Dr. Lidia Schapira: Well, thank you, Karl. Is there any final message that you want to convey? Or is there something that I haven't asked you that you'd like to talk about before we close? Dr. Karl Lorenz: Maybe I just express gratitude. So often we write and we just don't know that we have an audience. I feel that way. And so to know that it connected with you or with other readers is just such a pleasure, because I think we write, and maybe it's healing for us in a way, but it's also healing for us to know that it's healing for others. So, thank you. Dr. Lidia Schapira: What a lovely way to end this idea of community, and I think that's one of the intentions that we have through this podcast, also of connecting people to others and helping us all reflect together and feel accompanied by colleagues. So, thank you for sending this to JCO. And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at . 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 individuals' 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. so you never miss an episode and leave a rating or review. Guest Bio: Dr. Karl Lorenz MD, MSHS is a palliative care and primary care physician and Professor of Medicine at Stanford University. /episode/index/show/aoopodcast/id/33298892

Just Humor Me: Laughter in the Cancer Clinic 09/10/2024

Just Humor Me: Laughter in the Cancer Clinic Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by Dr. Stacey Hubay, who is a Medical Oncologist at the Grand River Regional Cancer Center. The essay is followed by an interview with Hubay and host Dr. Lidia Schapira. Dr Hubay share how even though cancer isn't funny, a cancer clinic can sometimes be a surprisingly funny place. TRANSCRIPT Narrator: , by Stacey A. Hubay, MD, MHSc Most of the people who read this journal will know the feeling. You are lurking at the back of a school function or perhaps you are making small talk with your dental hygienist when the dreaded question comes up—“So what kind of work do you do?” I usually give a vague answer along the lines of “I work at the hospital” to avoid the more specific response, which is that I am an oncologist. I have found this information to be a surefire conversational grenade, which typically elicits some sort of variation on “wow, that must be so depressing” although one time I did get the response “Great! I’m a lawyer and a hypochondriac, mind if I ask you some questions?” After I recently dodged the question yet again, I found myself wondering why I am so reticent about telling people what I do. While discussing work with strangers in our hard earned free time is something many people wish to avoid, I think for me a significant motive for this urge to hide is that I do not actually find the cancer clinic to be an overwhelmingly depressing place. Admitting this to others who are not engaged in this work can lead to at the very least bafflement and at worst offense to those who believe that laughing while looking after cancer patients is a sign of callousness. I am an oncologist who laughs in my clinic every day. Of course, the oncology clinic is sometimes a bleak place to work. Cancer has earned its reputation as a fearsome foe, and the patients I see in my clinic are often paying a heavy toll, both physically and emotionally. Many are grappling with their own mortality, and even those with potentially curable cancers face months of challenging treatment and the torture of uncertainty. Yet somehow, perhaps inevitably, the cancer clinic is not just a place of sadness and tears but also a place of hope and laughter. Although most of us recognize humor and use it to varying degrees, few of us consider it as an academic subject. A few lucky souls in academia have taken on the task of developing theories of humor, which attempt to explain what humor is, what purpose it has, and what social function it serves. Although there are almost as many theories of humor as there are aspiring comedians, most explanations fall into one of three categories: relief theory, superiority theory, and incongruous juxtaposition theory.1 Relief theory holds that people laugh to relieve psychological tension caused by fear or nervousness. I suspect this is the most common type of humor seen in a cancer clinic given the weight of fear and nervousness in such a fraught environment. The second category, people being what we are, asserts that sometimes we laugh out of a feeling of superiority to others. It goes without saying that this sort of humor has no place in the clinician patient interaction. Finally, we laugh at absurdity, or as Kant put it, at “the sudden transformation of a strained expectation into nothing.”2 This last category is also surprisingly fruitful in the oncology setting. Laughter in the cancer clinic is still to some extent considered taboo. Near the start of my oncology training, I remember laughing until my stomach hurt with my attending staff in the clinic workspace between seeing patients. What we were laughing about escapes me now, but what I do clearly recall is an administrator in a buttoned-up suit striding over to us in high dudgeon. “Don’t you people realize this is a cancer clinic?” she admonished us. “This is not a place for laughter!,” she added before striding off, no doubt to a management meeting or some other place where the policy on laughter is more liberal. At this point, my attending and I looked at each other for a beat and then burst into helpless gales of laughter. We do not tend to think all that much about why we are laughing at something, but looking back now, I think at least part of the reason was the absurdity of a person so unfamiliar with the culture of the cancer clinic presuming that physicians and nurses somehow park their sense of humor when they arrive at work and turn into a herd of gloomy Eeyores. We oncologists are starting to come clean about the fact that we laugh in the clinic and there is now a modest amount of work in the medical literature addressing the use of humor in oncology. One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis.3 If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it? Sometimes, it is the patient or their family member who introduces an element of humor into an interaction as on one occasion when my patient was filling out a pain survey which included a diagram of the body on which he was asked to circle any areas where he was having pain. As his wife ran through a detailed list of his bowel habits over the past few days, the patient circled the gluteal area on the diagram he was holding, pointed to his wife and said “I’ve been suffering from a pain in my ass doctor.” His wife looked at him pointedly for a moment before the two of them started laughing and I joined in. Sometimes, a patient’s use of humor serves to level the playing field. Patients with Cancer are vulnerable, and the physician is an authority figure, meting out judgments from on high. My patient from a few years ago was having none of that. I met him when he was referred to me with widely metastatic lung cancer, a diagnosis typically associated with a dismal prognosis. The patient, however, was not buying into any of the usual gloom and doom that is customary for these interactions. As his daughter translated the information I was providing, he tilted his chin down, fixed his gaze on me, and proceeded to smile at me in a disarmingly friendly way while simultaneously waggling his generous eyebrows up and down throughout the interview. Over the course of 45 min, I became increasingly disconcerted by his behavior until eventually, I was unable to finish a sentence without sputtering with laughter. If you think you would have done better, then you have clearly never been on the losing end of a staring contest. By the end of the interview, all three of us had happily abandoned any hope of behaving with more decorum. Laughter and the use of humor require a certain letting down of one’s guard, and the fact that all three of us were able to laugh together in this interview took me down from any pedestal onto which I might have inadvertently clambered. One study from the Netherlands noted that patients used humor to broach difficult topics and downplay challenges they faced and concluded that “Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making.”4 Although it could be a coincidence, it is worth noting that several years after meeting this patient, I discharged him from my practice because he had somehow been cured of lung cancer. Perhaps laughter really is the best medicine. On other occasions, it might be the physician who takes the plunge and uses humor during a clinical encounter. The same Dutch study by Buiting et al noted that 97% of all specialists used humor in their interactions and all reported laughing during consultations at least occasionally. One of my colleagues, a generally serious sort whose smiles in clinic are as rare as a total eclipse albeit not as predictable, managed to win over his patient with a rare outburst of humor. During their first meeting, the patient listed off the numerous ailments he had experienced in the past including his fourth bout with cancer which had prompted this appointment. As he finished reciting his epic medical history, my colleague looked at him somberly over the rim of his glasses for a moment and asked “Sir, I must ask—who on earth did you piss off?” The patient was so tickled by this interaction that he recounted it to me when I saw him a few weeks later while filling in for my colleague. Although humor is a powerful tool in the clinic, it is of course not something that comes naturally to all of us. Attempts at humor by a clinician at the wrong time or with the wrong patient do not just fall flat but can even be damaging to the physician-patient relationship. Even if a physician uses humor with the best of intentions, there is always the possibility that they will be perceived by the patient as making light of their situation. As Proyer and Rodden5 point out, tact is essential and humor and laughter are not always enjoyable to all people, or to borrow a phrase frequently used by one of my patients, “about as welcome as a fart in a spacesuit.” Socalled gelotophobes have a heightened fear of being laughed at, and with them, humor and especially laughter must be wielded with great care if at all. All I can say in response to the legitimate concern about the use of humor being misconstrued is that as with any other powerful tool physicians learn to use, one improves with time. As far as PubMed knows, there are no courses in medical faculties devoted to the fine art of the pun or the knock-knock joke. But even if we physicians cannot all reliably be funny on command, perhaps there is something to be said for occasionally being a little less self-serious. One must also be mindful of patients with whom one is not directly interacting—to a patient who has just received bad news, overhearing the sound of laughter in the clinic corridor has the potential to come across as insensitive. Moments of levity are therefore best confined to a private space such as the examination room in which physicians and patients can indulge in anything from a giggle to a guffaw without running the risk of distressing others. The final reason I submit in support of laughing in a cancer clinic is admittedly a selfish one. While humor has been shown to have the potential to reduce burnout,6 the real reason I laugh with patients in my clinic is because it brings me joy. The people at parties who think my job must be depressing are not entirely wrong. I have noticed that when I have a positive interaction with a patient based on humor or laugh with a colleague about something during a meeting, I feel better. Surprise! As it turns out, this is not just an anecdotal observation. In 2022, a study was published whose title was “Adaptive and maladaptive humor styles are closely associated with burnout and professional fulfillment in members of the Society of Gynecologic Oncology.”7 The SGO has not to my knowledge been widely recognized up to this point for their sense of humor, but I have a feeling that might change. Humor is an essential part of the way I approach many situations, and given that I spend the majority of my waking hours at work, it is neither possible nor I would argue desirable for me to leave that part of myself at the entrance to the cancer center. So to the administrator who admonished my mentor and me to cease and desist laughing in the cancer clinic, I respectfully decline. My patients, my colleagues, and I will continue to laugh together at any opportunity we get. Joy in one’s work is the ultimate defense against burnout, and I for one intend to take full advantage of it. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Stacey Hubay, Medical Oncologist at the Grand River Regional Cancer Center. In this episode, we will be discussing her Art of Oncology article, “Just Humor Me.” Our guest disclosures will be linked in the transcript. Stacey, welcome to our podcast, and thank you for joining us. Dr. Stacey Hubay: Thank you for having me. It's a pleasure to be here. Dr. Lidia Schapira: It is our pleasure. So let's start by chatting a little bit about what humor means to you and what led you to write this piece and share it with your colleagues. Dr. Stacey Hubay: I didn't realize how important humor was to me until recently. I just finished a Masters in Bioethics, which was 20 years in the making, and this was the first time I'd been writing anything that wasn't a case report for many, many years. And there was actually specifically a course called “Writing in Bioethics,” and this was the first thing that came to my mind. And I realized sort of how much humor there is in my day to day work life, which, because none of the other people in this bioethics class of 10 or 14 people were working in oncology, they were surprised. So I thought it would be interesting to write about that. And then when I started thinking about it, I realized how integral it is to most of, I guess not just my practice life, but the way I deal with life. And then I could see a thread going back all the way to the beginning of my practice in oncology, and I'm like, “I should write about this.” And I don't think it's unique to me either. I think it's probably many of us in this field. Dr. Lidia Schapira: It is. So let's talk a little bit about humor in the practice of such a serious specialty as we tend to think, or people tend to think of, as in oncology. You talk about humor also connecting you with joy and practice, can you tell us a little bit more about that? Dr. Stacey Hubay: I'm just as surprised, probably as anybody, at least when I first went into this field, which is now more than 20 years ago, how much happiness I found in the field. I meant what I said in the beginning of this essay. When I run into people or strangers, you're getting your hair cut or you're at your kid's volleyball practice, and people always say, “Oh, so what do you do?” And I always say, “I'm in healthcare.” And if they start drilling down, eventually I have to admit what I do. And I say, “I'm an oncologist.” And immediately the long faces and people say, “That must be so terrible.” And I'm like, “Well, it can be, but it's not as bad as you might think.” And they're like, “Oh, it must be very difficult.” And I know that avenue of conversation is closed once or twice. I think I did try saying, “You know what? I have a surprising amount of fun in my clinic with my patients.” And they were aghast, I think is the word I would use. And it made me realize sort of what a taboo it is for many people, including maybe some of us in the field, to admit that we sometimes enjoy ourselves with our patients in our clinics. Dr. Lidia Schapira: So let's talk about that. Let's talk about joy, and then from there to laugh. I think the reason why laughter seems sort of stranger than joy is laughter assumes that we see some levity, humor. And some people would say, there's really nothing funny about having humor. And yet you seem to see it and find it and share it with your patients. So take us into your exam rooms and tell us a little bit more about your process. Dr. Stacey Hubay: It's funny, when I think about the humor in my clinics, I don't see myself as the one who's necessarily sort of starting it, although maybe sometimes I do. I think perhaps it's just that I'm more open to it. And I think it's frequently the patients who bring it in with them. Obviously, we know patients in the oncology clinic, they're often very nervous. It's a very anxious time for them. And we are in a position of power compared to our patients, they're very vulnerable. And so sometimes the patient makes a joke, sometimes I wonder if it's a way of testing if that kind of relationship will work with you. They're kind of testing you to see if you will respond to that. And it's also a way of them relieving their own anxiety, because one of the theories about humor is just a way of alleviating tension. It makes sense that oncology is a place where humor would be welcome, because it's one of the most tense places, I think, in medical practice, although I'm not sure it's present in other places like at the ICU. So the patient often brings it in, and then you respond to it, and if you're on the same wavelength, it sort of immediately establishes this kind of trust between you and the patient. It's not something you can do with everybody. Sometimes some people will not be open to that at any time. And some patients, you have to get to know them quite a bit before that starts to come into the mix. But I find with most people, if you follow them for long enough and you have a good working, therapeutic relationship with them, just like you would the people you like, your friends, your family, that comes into a relationship almost unavoidably. And I used to think, “Oh, I'm not supposed to do that,” when I first came into practice. I'm a serious oncologist, which I am, and I can be a serious oncologist. And I also just didn't have the bandwidth for it. I think I was so kind of focused on, I have to know what I'm doing. Early in my practice, I didn't have the mental energy to devote to that. And then as that part became easier, I became kind of more open, I think, to that, coming into the interactions with my patients. And over time, I started realizing that was probably what I enjoyed the most about my working day. At the end of the day, I'd come home and tell stories, and my kids would be like, “It sounds like you have fun at work.” And I go, “You know? I really do. Surprisingly I do.” Dr. Lidia Schapira: That's so very cool. I think there's so much wisdom in what you just told us, which is that at the beginning, especially when in the first few years of your practice, you really are so focused on being clinically competent that you may be just very nervous about trying anything. And then as you relax, you actually say in your essay that for some people, this may bring relief and may level the playing field. So if there is an opportunity and you're loose enough to find it, you may be able to keep that conversation going. It made me wonder, I don't know if you've had any experience yourself as a patient or accompanying a family member as a caregiver to a medical visit. Have you used humor when you are the patient or when you're accompanying the patient? Dr. Stacey Hubay: That's an interesting question. I haven't been a patient apart from my routine family medicine visits for quite a long time. But when I was much younger, I was a teenager, I did have that experience. I was maybe 15 or 16. I had some parathyroid issues. And I remember seeing these specialists in Toronto, and they were very serious people. I remember thinking, if I want to become a physician, because it was at the back of my mind at that time, I'm going to be a lot more fun than these people. I'm going to enjoy myself a lot more. And little did I realize how difficult that actually was at the time. But I found them kind of very serious and a little bit intimidating as a 15-year-old kid. I hadn't reflected on that before. I'm not sure if that's something that I'm deliberately pushing back against. I think now if I see a physician as a patient, I probably am much more willing... /episode/index/show/aoopodcast/id/32752152

Scotch and Pizza: Humanizing Care in the ICU Made All the Difference 08/27/2024

Scotch and Pizza: Humanizing Care in the ICU Made All the Difference Listen to ASCO’s Journal of Clinical Oncology article, "” by Dr. Paul Jansson, who is an Emergency and Critical Care Physician at the Brigham and Women's Hospital. The article is followed by an interview with Jansson and host Dr. Lidia Schapira. Dr Jansson share his perspective as a critical care physician and how one question can serve many purposes all at once. TRANSCRIPT Narrator: by Paul S. Jansson, MD, MS “Would you tell me about J?,” I asked. What was she like? I made eye contact with one of her sons, who looked back at me, somewhat puzzled. “You mean her illness?” he asked, quizzically. Immediately, I worried that I had lost the family, all sitting shoulder-to-shoulder in the cloistered conference room. No, I responded, can you tell me about J before the illness? What was she like? J came to the intensive care unit (ICU) in the early hours of the morning, only a few hours after making her way from the emergency department to the oncology ward. Admitted with a diagnosis of failure to thrive and dehydration, her CT scans made clear the extent of her cancer’s spread. Over the last few months, she had shown remarkable improvement with each serial round of palliative chemotherapy, beating the cancer back and holding it at bay, one round at a time, but it had now spread seemingly everywhere, despite medication, despite molecular testing and targeted treatment, and despite her tenacity. Overnight, she became more and more confused, her electrolytes deranged from days of poor oral intake, now admitted to an unfamiliar environment. Her lungs, bearing the brunt of her disease, had further suffered over the week as she aspirated. As her breathing became more labored, a nasal cannula progressed to positive pressure ventilation. By early morning, she was unresponsive, and the early morning phone call to her family had led to a panicked reversal of her Do Not Resuscitate/Do Not Intubate order. And so she came to me, mechanically ventilated, blood pressure supported by an armada of vasopressors, her body failing, which brought us back to that small room. We didn’t have the chance to get to know her before she got sick. I looked around the room, meeting their eyes. We only know her like this. What was she like before all of this? In my first months of intern year in the ICU, I had seen this technique used in family meetings. Initially, I adopted it as a matter of routine, copying the methods I had seen used by senior residents and attending physicians. As I came into my own as a physician, developing my own style, I began to see its value. It opened my eyes beyond the Comprehensive Flowsheet and the Results Review spreadsheet that scrolled into infinity. It showed me why I was doing what I was doing and who I was doing it for. “She loved scotch and pizza.” The room was silent, and we looked around. Her oldest daughter, a nurse herself by training, had broken the silence. Together, she clarified. I know it’s a weird combination, she said, but she loved scotch and pizza. It must have been something from college. We all glanced around for a moment, making bewildered eye contact, before the entire room broke into laughter. “She made a mean coleslaw,” volunteered another brother. “And a great hot dog.” “She was a fantastic mother,” reported the next. “She was my soul.” Thus far, her husband had sat quietly in the corner, the face of stoicism. He was a retired physician, a self-described man of few words. A moment of silence as we all looked toward him, across a conference table, barren except for half-used boxes of tissues, surrounded by children on both sides. She was the best thing that could ever happen tome, he continued. Another long pause, until the words spilled forth. When I would leave her to go to work, I felt incomplete. When I returned home, I felt an immense sense of being at peace. When I was with her, I was calm. She made me whole. She was my soul. We sat in silence, the tears welling in my eyes, welling in all our eyes. She was everything that I was not. Kind. Patient. A fantastic cook. We laughed. Then, another long pause as he gathered his thoughts. And now I know what I need to do. In his stoicism, his silence, his love, he told us what we all needed to hear. As deeply as her loss would rend his soul, there was nothing more that I could do—that anyone could do—to bring back the woman who gave such life, and further treatment would only prolong her suffering. She died that afternoon, surrounded by her family, finally at peace. A chef for the neighborhood. A mother. A friend. A wife. A soulmate. And a lover of scotch and pizza. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Paul Jansson, an Emergency and Critical Care Physician at the Brigham and Women's Hospital and a member of the Harvard Medical School faculty in Boston. In this episode, we'll be discussing his Art of Oncology article, “Scotch and Pizza.” At the time of this recording, our guest has no disclosures. Paul, welcome to our podcast, and thank you for joining us. Dr. Paul Jansson: Well, thank you. It's a pleasure to be here with you. Dr. Lidia Schapira: So first, let me ask a little bit about this essay and about your intended audience. This is a beautiful meditation, I would say, on a family meeting that takes place in the context of somebody with advanced cancer. What led you to write it? What led you to decide to share it, mostly with an oncology readership. Dr. Paul Jansson: This is a piece that I think wrote itself and it was something that came to me as I couldn't sleep in the hospital call room. I was on call the day after this family meeting and lying in the polyester sheets and listening to the air conditioning rumble, I couldn't sleep. And it just came to me all of a sudden that I had to write it, and I had to write it in this exact way. I was working an overnight shift in the intensive care unit, and at 5:00 a.m. sat down at the computer, and this just all poured out, basically, in the method in which it appears today. I think there were very minor grammatical changes, but it really just came out. It was a story that I feel that I needed to tell. Dr. Lidia Schapira: So why do you think that this meeting and this family impacted you so deeply? I mean, there's a huge emotional connection here, and I introduced you as a critical care doctor, but you sound like a palliative care doctor to me here, sitting with a patient, basically just asking one question and then watching this loving scene unfold. And it struck me that it moved you. Did I get that right? Dr. Paul Jansson: I think you're absolutely right. Brigham and Women's Hospital is the inpatient hospital for the Dana-Farber Cancer Institute in Boston. And so, by its nature, intensive care medicine at Brigham Women's is a lot of oncology care. And so you are absolutely right in that these conversations are very routine for us. But there was something about this family, the connection, that just stuck with me. I think with many of these conversations, it's relatively routine. It's certainly not routine for the families. But as an intensive care specialist, this is a relatively routine conversation. And to get this level of detail and humor and eulogizing on the part of her husband is really quite unusual and was very profound to me, sitting in that moment stuck with me. Dr. Lidia Schapira: I was struck, Paul, by the fact that you asked one question, and immediately they're talking about her in past tense. She was. She loved. She did. Did that strike you in the moment as sort of showing that they actually knew exactly what was happening? Dr. Paul Jansson: Yeah. I think there is a moment in these conversations where the family understands what is happening and what needs to happen. And it's, I think, best if the family gets there on their own and works really well in that goals of care setting. And I think the love that they were expressing for her and the admiration and the appreciation, that was really profound to me. Dr. Lidia Schapira: One of the reasons why I love your piece is that it takes us from what we are now teaching as a goals of care discussion or a family meeting. And it brings us back more to the art of medicine, the joy of medicine, and the intimacy of these moments. This family was totally ready to accept you in their little circle and start to share things that were really very deep for them. Tell us a little bit about what it was like to be in the room with her husband, who's a retired physician, her daughter, who's a nurse, and the other family members who seem to be sort of helping one another to eulogize, as you said, in the most loving way, their almost gone mother and wife. Dr. Paul Jansson: I am not an oncologist, and I do not have the pleasure of these longitudinal relationships that many oncologists have developed over months and years and decades for some of these patient physician relationships. And so as an intensive care physician, it's a very quick and powerful bond that we are really forced to make with the families. And so I actually never talked with this woman. She was intubated on the night shift and was brought to the intensive care unit, intubated and sedated, and I never got to meet with her. I never got to sit in the office with her and discuss her hopes and her fears and her journey and all of those things that are really more the domain of the oncologist. But in our specialty, I have to really develop this relationship very quickly, where people will trust a life and death discussion with someone whom they've only known for 15 or 20 minutes in some circumstances. And so it really is a privilege and an honor to be granted this degree of trust and disclosure and openness about who the patient is and was in the life before I met her. And so sitting in that room, it's always very awkward to start. It's a converted conference room with some boxes in the corners, and there's only, as I wrote in the piece, a box of tissues on the table. And so very quickly, we have to go from, “Paul Jansson, I'm the intensive care doctor,” to these discussions of life and death, and how to negotiate this very fraught transition, I think is really the point that I think you're getting at in the art of medicine. And how do we go from 0 to not 0 to 60, but 0 to 100 with these really life and death decisions? And that's very difficult. Dr. Lidia Schapira: In a flash. Dr. Paul Jansson: Exactly. And far sooner than anyone wanted, I think, if any of these families. Everything is so sudden. I even wrote about this in the piece. She had a DNR, DNI in place, and they got the call at 03:00 a.m., 04:00 a.m. however early it was in the morning. And so you can really tell at that moment they were not expecting any of this. They were not ready for any of this. But unfortunately, we were in that circumstance. Dr. Lidia Schapira: You know, Paul, when I hear you speak, I remember a friend of mine who is an actor and teaches doctors communication skills, and she basically says that doctors and actors have 90 seconds to develop rapport with their audience. And basically in your field or in the emergency room, this actually plays out every day. You're absolutely right, we in oncology often build these relationships, craft these relationships over time. And we probably know the names of all the people in the room and we would know what they do. But you're just kind of walking into the scene. Now that you've had a little time to reflect, do you know what it was that led them to reverse that DNR/DNI decision? Was it panic? Was it not knowing? I think as a reader, I'm struck with the fact that they had a plan, they reversed the plan, and then they quickly just came right back to what the original plan was. Maybe they hadn't expected this to happen so quickly. Dr. Paul Jansson: I think it's more common than we think it is, or perhaps it should be. And I think every family has a different reason for why this is. And I think for some families it's just they needed more time. And so this was for them a call that was at 04:00 a.m. and they were at home and they weren't with her. And many families just want to be there for the end. I think for some families there's a bit of denial, “Okay, sure theoretically she said do not resuscitate, do not intubate, but we're not at that point yet.” So I think for some families there's that. And for some families, it just takes more time than they're expecting. And that's not unusual in our world, as I think everyone there saw what was happening to her and what we had essentially done to her, intubating her and putting her on all the pressors and doing all these things that were somewhat against her wishes at the end of life, so we had done these things to her. And it just took a little bit more time to realize this was not what she would want and also to give them time to be there. But I think every family has a different motivation, and it's hard to say how you would react with that phone call at 02:00 a.m. It's never what you think it would be. Dr. Lidia Schapira: Yeah, it's the old president's commercial, right? “Who do you want to take this call at 03:00 a.m. when there's an emergency?” But when it's this personal, I can understand it. I wonder if you can tell us a little bit how it struck you when the family sort of very organically again reached the conclusion and her husband articulated, “I know what I need to do.” What did that feel like for you as the critical care doctor who is quickly trying to lead this family to perhaps what you would consider the most dignified or humane, compassionate denouement for them? Dr. Paul Jansson: I think the first feeling for me was relief and just knowing that the decision that they had made for her was the right decision. And it wasn't a decision that I needed to make and talk them into or negotiate with them. It was the decision that they knew was right. And I think the other thing that stuck with me so much was the love and humor that they displayed in this. And I think many, many families would cry and be sad, but how many families would sit there and make a joke about this strange food combination that she has from college and how she loves to cook from the neighborhood, and all of these just flashes of humanity and humor that I was not expecting from the family. And then in that moment, we went very suddenly from humor to this profound grief and appreciation and reflection on who she was as a woman and her personality and how well that complemented her husband. And it was just this emotional whirlwind where we go from bad news to laughing together to crying together, all in the span of what was probably 10 to 15 minutes. That really stuck with me. Dr. Lidia Schapira: Paul, humor me here. I don't often get to interview a critical care doctor, especially on a public medium like a podcast. So speak a little bit to me and through me to our listeners. What can oncologists do to have a good rapport with the critical care docs and nurses who are actually looking after their patients? Sometimes there are all of these moments of anticipated tension, and I wonder if you can just give us a little instruction. Dr. Paul Jansson: That's a wonderful question. I think honesty and truthfulness is always incredibly important, and taking that relationship that you've built with the family over time and bringing us into that circle of trust and letting us give our perspective. And I am not the oncologist, as I said before, I do not know all of the data and all of these things that is well within your specialty, but I know that the specialty of critical care and what is and isn't achievable, and to have the oncologist team have those developed relationships and ideally some knowledge of what the patient would want and blend that with what I'm able to deliver as an intensivist. I think that the trust together and the working together for what the patient wishes and what we can actually deliver for the patient, that's really what is most meaningful in collaborating with the oncologists. Dr. Lidia Schapira: Yeah, I say a little prayer for that. I know that I've walked into an ICU and hoped very much that my colleagues in critical care didn't see me as an oncologist in denial, somebody who wanted to be very much a sort of present for their patient. You probably have some of those stories. Dr. Paul Jansson: There's an interesting tension. Yeah, I think you exactly pointed that out, that there's this tendency to think that the oncologist is always going to offer yet another round of chemotherapy or some clinical trial that can be offered. And on the intensive care side of the fence, we're sitting and counting on our fingers and sometimes toes, how many organ systems are not working, and how we negotiate that hopefulness and optimism with who is in front of us and what we've been dealing with over the last hours and days and weeks. And I think the tension is probably more theoretical. Every time I talk to the oncologist, they're quite realistic. I think more than perhaps is in my mind. So I think there's more of a theoretical disconnect than there is in real life. Dr. Lidia Schapira: Well, I hope our professions can coexist and work collaboratively for the sake of our patients. Talk to me a little bit about how you might use this very intimate story in your teaching, since you're part of a teaching faculty. Dr. Paul Jansson: Well, shortly after the preprint was posted, I actually received a letter by email from a faculty member at a teaching hospital affiliated with a cancer hospital, saying that he was going to start using this piece in his discussions about how to have goals of care discussions with his oncology fellows. And I think there are two different purposes of the question that I asked: “Tell me about her.” And I think they serve two distinct purposes. And the first is this humanizing and making a human connection that we talked about. It allows you to make some of that connection that you haven't had the ability to do over the last weeks and months and years. You can really see that patient as an individual person. And I think the second role that this question helps with, particularly for the intensivist, is it really helps to expectation set. And so for many people, the answer to this question will be, “Oh, well, she was running a mile a day, and she loved her pottery and she loved whatever it was that is her passion.” And for some people, the answer may be, “Well, she was having a really hard time lately, and she was spending more time in the hospital than out of the hospital.” And so that can also really help from the intensivist side of things with prognosticating and really being realistic about what we can offer at this moment. That's why I really like this question “Tell me about her,” because it really helps with everything all at once. It lets us make that human connection. It lets us gather some of the clinical information that we need, and it reminds us of why we're doing this job in the first place, and that's to take care of the patient. Dr. Lidia Schapira: Yeah. My very last question now is this: It occurs to me that you have a lot of these moments, and as you say, you cry, you share in the human aspect of all this. And you're right there, you have a front row seat to this grief and this loss. Do you and your colleagues have any protocol or ritual to help one another and support one another and at least acknowledge the emotional load of your work? Dr. Paul Jansson:... /episode/index/show/aoopodcast/id/32751452

Mandatum: Accompanying a Patient Until the Very End 08/13/2024

Mandatum: Accompanying a Patient Until the Very End Listen to ASCO’s Journal of Clinical Oncology poem, by Dr. David Harris, who is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. The poem is followed by an interview with Harris and host Dr. Lidia Schapira. Dr Harris share how his team honors a patient's spirit TRANSCRIPT Narrator: , by David Harris, MD Where does the soul reside in the darkness of the body? Does it flicker along the highways of nerves up the spine up the neck to the globe of the skull or does it pulse, a lightening bug in the vast caverns of our bellies? The foot was his answer his left, to be precise. The cancer mushrooming from his heel a small price for a soul. We told him he had a choice: We would take the foot or this sarcoma would take all of him. But when he chose, we did not understand. We told him a hundred times in a hundred ways. We told him he did not understand could not understand so could not choose. He told us he once walked all night through the cold to reach us. “When I die I want to be whole.” The foot where our flesh greets the earth’s flesh. Where our weight collects builds presses down. Where else would a soul want to be when we slip bare feet into sand letting the cool stream run over? We washed and wrapped the foot in white, clean cloth then unwrapped it, to wash again. Washing as the cancer grew. Washing as the soul flickered. Each day washing. Choosing what we could not understand. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. David Harris, Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology poem, “Mandatum.” At the time of this recording, our guest has no disclosures. David, welcome to our podcast and thank you for joining us. Dr. David Harris Thank you, Lidia. It's wonderful to be here. Dr. Lidia Schapira: Let's start by talking a little bit about your process for writing. You're a published author. We've published one of your beautiful poems in the past. This is, I believe, the second time. So tell us a little bit about when you write, why you write, and when you decide to share your writing with others through publications. Dr. David Harris: I think my writing starts when I have an experience that feels profound and sticks with me, and there's a certain way that feels in my body. I'll leave a room and I'll say, something happened in there. It didn't just happen to the patient, but something happened to me. It'll be one of those moments, and I think we all have these that we keep coming back to, a patient that we keep coming back to, sometimes even a single sentence that somebody said that we keep coming back to. And over time, I've realized that when I have that feeling, there's some poetry there, if I can sit with it. And I spend a lot of time just sitting and thinking about the story and trying to find what pieces of it are meaningful to me, what images are meaningful. And from there, after a long time just sitting and experiencing and listening to myself, then I begin to write, and the writing piece ends up not taking that long. It's much more of the first piece. Dr. Lidia Schapira: And tell me, why did you choose poetry? Or do you write prose and poetry, and we just happen to be talking about poetry? Dr. David Harris: I find poetry to be so much easier than prose. One of the things I love about poetry is that so much is left unsaid. And the idea of writing something with a plot and with dialogue and character development, that seems like a real task and a real feat. There are so many different types of poetry, and the poetry that I'm interested in writing just describes a moment. That's all it is, just shares a moment that I think other people might also enjoy. And so that seems simple. Dr. Lidia Schapira: So, David, help me translate what you just said for our readers. In a way, many people feel that somehow they don't understand poetry, or they're not capable of fully grasping everything the poet maybe intends. Why do you think people have this feeling about poetry, almost, I will compare it here to abstract art? This feeling that somehow you need something else to understand it? Is that real or is that just a perception? Dr. David Harris: I think that's the real experience for so many people. And maybe a better comparison than art would be music, in that there's pieces of music that I will listen to, and I'll say, I can't understand this, and they might be masterworks of famous composers, but for me, I don't have the ability to access that. And then there are pieces of music that I love, Taylor Swift, that's kind of my speed. And I think that poetry can be like that, too. I think there's poetry that you need training to be able to appreciate and to understand, and then there's poetry where just your human experience is what you need, and you can read it, and whatever it means to you, that's what it means, just like when you listen to a song. The first time I experienced poetry, and I bet this is the case for a lot of the listeners, was in English class, where I got graded on my ability to understand poetry and talk about a way to take the joy out of it is to be evaluated. I guess they probably didn't pick poems that were super easy to understand, because that's not really the point of it. I wonder if a lot of it comes from these experiences we all had in junior high and high school English, reading poetry. I don't think it has to be like that. Dr. Lidia Schapira: Good. No, I don't think it has to be like that. So let's talk about your beautiful poem here. What inspired the poem? It sounds like this was an encounter with a patient that really moved you and made you question many of our practices. Tell us a little bit about this person. Dr. David Harris: Yes. This was a person who came to our hospital with a mass on his left heel, a fungating, bleeding mass. And the sarcoma team we have here, the surgeons and the medical oncologists, felt quite confident that it was a sarcoma without even biopsying it. Confident enough that they recommended a resection even before biopsy as a curative approach. And when they shared this with the patient, the patient refused the curative surgery. And the reason that he refused is he said that if we amputated part of his body, his soul would be lost through the amputation. And in medicine, we're not used to talking about souls, or at least my team is not, and we didn't really know what to do with this. This person had a longstanding history of severe schizophrenia, and when our psychiatrist came to evaluate him, they did not think that he had capacity to make decisions. And there were no people in his life that could be a surrogate for him. So he was a patient without a surrogate. And there were so many complex issues that this brought up for us. We were in the uncomfortable position of having to make a choice for a patient, and that's not something that we're used to doing in medicine, and I think that's a very good thing. There was this discomfort of making this life or death choice for this patient. How could we do that? How could we take that responsibility? Dr. Lidia Schapira: So let's think about this a little bit from at least your perspective as a palliative care doctor who was brought in, I assume that was your role here, right? Dr. David Harris: Yes. Dr. Lidia Schapira: Perhaps as an ethicist or palliative care consultant to bring it all together. So maybe the way to think about it, or perhaps if I imagine how you thought about it, was the suffering that this imposed for this person who was right in front of you. You couldn't change him. You couldn't change his mental health. You couldn't change his decision. But somehow you approached him as somebody, perhaps, who is a sufferer, who has a big problem. Tell us a little bit about how you and your team aligned yourself with what the patient wanted or the patient expressed, even though you understood that, from medical legal perspectives, he lacked capacity to decide. Dr. David Harris: We spent a lot of time with him. We spent a lot of time talking as a group. Our bioethics team, in addition to me and many of our palliative docs were all really involved. One of the things that really played into our thought process was that he did not have a temporary lack of capacity. And this desire not to have the amputation was not temporary. This was permanent. And there wouldn't be a day that he woke up and said, “Thank goodness, you didn't listen to me and you did that amputation.” And the other thing we thought a lot about is how much suffering do we give somebody if they feel they've lost their soul, and how do we quantify that? Dr. Lidia Schapira: And if we're talking about souls, I can't help but ask you about all of the religious implications here. In your poem, you talk about washing feet. You give the poem a title that evokes a part of a religious liturgy. Can you tell us a little bit about how that theme came into the construction of your poem? Dr. David Harris: I think that this will sound a little silly, but as I was sitting here with this story and thinking about it, which is a part of my process in writing, I spent a lot of time thinking about feet because that's where his cancer was. And after we chose to not do the surgery and before he passed away, we spent a lot of time wrapping and unwrapping and washing his feet. And what we chose instead of doing the surgery was- that was what we moved towards. What we chose to do was do wound care and wash his feet. One of the things I think a lot about is the mundane actions that we do as physicians, as medical teams, and how significant and profound they can sometimes be. I think one example that many people have talked about and discussed is the physical exam and how it's not just a way for us to listen to the heart, but it's also this ritual. And for him, when I talked to the nurses who were caring for him, the wound care and the washing of his feet became a ritual. And I saw this parallel with what I learned about the washing of the feet that is done in Catholicism. I am not Catholic myself, and it's not something that I have personal familiarity with, but I feel like there are parallels to what we do as physicians in medical care, caring for the body and what other groups do, caring for other parts of humans. And so I saw that parallel there. Dr. Lidia Schapira: That's beautiful. Now, can you tell us a little bit about the title? I'm sure it's not something that the readers of the Journal of Clinical Oncology often encounter as a heading for an article. Dr. David Harris: I know, I was so excited. Poets are famous for having a title that doesn't make any sense. So I think one of the things I hope readers associate when they hear that word that they may not know is the word mandate. And when we think about what we do in healthcare, how does the word mandate come into what we do? And for this case, where we determined he had a lack of capacity, where we chose whether he would have surgery or not, how does that word play into the story? And then, in addition, “Mandatum” as sort of a ceremony of washing the feet, and the significance of that as a spiritual ritual and what we did for him as a medical ritual, and the parallels there. Dr. Lidia Schapira: David, I wonder if, wearing your educator hat as an educator of fellows, you can talk a little bit about how you bring all of this beautiful and complex philosophy of care, of seeing the whole person, of responding to suffering and reflection, or your reflection through poetry and through the arts, how you bring that to your fellows and how you help them to develop some of these greater techniques for their own enjoyment and for their own development. Dr. David Harris: That's such a wonderful and thought provoking question and something that I've been thinking about so much this year as our new fellows are joining us. The way I bring it into the room when I'm seeing patients is one of the easiest ways to show them, because we will go see patients together, and they can begin to see how learning about the non-medical pieces of a person can change the whole medical interview and the whole interaction between a physician and a patient. And I think that's something that our fellows leave the year with, and also our oncology fellows, when they rotate with us, they've said that one of the things they leave the rotation with is this appreciation for how all parts of a patient are important in their receiving excellent care. The second thing you were asking is, how do I help fellows in their personal journey inward. And for me, that's been a journey through poetry, and I feel like that's something I'm still trying to understand how to do, because each person has their own way in, and I don't know if writing poetry- I will say, I'm sure that not everyone's way in is going to be writing poetry, and it shouldn't have to be. And so how can I invite my fellows inward on this journey? Show them how I do it, show them how other people in my department have done it, and then also not force them because I don't think that's helpful at all. Dr. Lidia Schapira: Yeah, and it doesn't work. This has been such an important conversation for me, and I'm sure it'll be very impactful for our listeners. So let me end by asking what you and your team learned from caring for this person. Dr. David Harris: One of the things that I'm really proud of my team for is how much time and how carefully we approached the situation. And it was not comfortable to make choices for somebody else. And I remember we all got together on a call, and every single person, med student, resident, bioethicist, nurse, physician, they all sort of shared their own thought process about what should happen. And every single person on that call had the same opinion about what to do. And I was proud of my team for that process. This thing that none of us really wanted to do, that at least we did it very carefully. Dr. Lidia Schapira: That's a beautiful reflection and really speaks to good leadership in the team and also the value of teamwork of feeling that you can- that you're safe and that you can express your views. And I imagine it must have been incredibly difficult. But thank you, David, for writing about it, and thank you for sending us your work. Dr. David Harris: It was a pleasure talking to you, Lidia. Dr. Lidia Schapira: And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. so you never miss an episode and leave a rating or review. Guest Bio: Dr. David Harris is an Associate Staff in the Department of Palliative and Supportive Care and Program Director for the Hospice and Palliative Medicine Fellowship at Cleveland Clinic. /episode/index/show/aoopodcast/id/32542762

It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss 07/23/2024

It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss Listen to ASCO’s Journal of Clinical Oncology essay, by Dr. Margaret Cupit-Link, who will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, MO. The essay is followed by an interview with Cupit-Link and host Dr. Lidia Schapira. Dr Cupit-Link shares her personal experience with childhood cancer and the importance of educating patients on the known and unknown consequences of their therapies so they can, when possible, participate in fertility preservation. TRANSCRIPT Narrator: , by Margaret Cupit-Link, MD I was 19 years old when I had to make one of the most important decisions of my life. The problem was, at 19 years, it was not important to me—yet. With piercing clarity, I recall the very first time I heard the word sarcoma. My leg had been hurting, and I had just undergone magnetic resonance imaging. The doctor spoke of abnormal tissue. As a pre-med student, I blurted out the words, “it’s cancer, isn’t it,” and waited for him to reassure me. He did not—he could not—reassure me. The days and weeks that followed are still a blur. There was more diagnostic imaging, a biopsy of my tibia, and placement of a subcutaneous port in my chest. When we learned that the Ewing sarcoma growing in my leg was not metastatic, my family celebrated; meanwhile, I struggled to eat, sleep, and breathe, unable to accept the reality that I was no longer a healthy college student. I was a patient with cancer. Before my chemotherapy would begin, my mom and I had to give legal consent. Technically, I had to give consent—as if I would choose to say, “no thanks,” to the only treatment that could give me a fighting chance to keep living. With each potential side effect that was mentioned, I felt a piece of my morale slip away. Was I going to die? Maybe. Regardless, I would lose my hair, my appetite, my immune system, and my independence. Should I be lucky enough to live through it, I would be susceptible to a host of late effects from chemotherapy, one of which was infertility. Infertility, I felt, was the least of my worries; it paled in comparison with heart failure, secondary malignancies, and death. As a 19-year-old, I did not want children. My career goals were my priority, and I had yet to be in a serious romantic relationship. Starting a family was not on my agenda. So, on the worst day of my life, when all I cared about was staying alive, I was told I could choose to undergo ovarian stimulation to harvest follicles in a somewhat experimental process that would delay the start of my chemotherapy by several weeks. Without hesitation, I said no. At the time, I did not realize I was lucky to have had time for such a conversation. My diagnosis and presentation allowed for a small delay before treatment; I would later learn that many patients do not get that luxury. A little over a year after completing therapy and returning to college, I developed hot flashes, night sweats, and mood swings. On the basis of the levels of luteinizing hormone, follicular stimulating hormone, and anti-Mullerian hormone in my blood and an ultrasound showing ovaries without follicles, I was diagnosed with premature ovarian insufficiency and told it was unlikely my ovaries would recover. I was not heartbroken or even disappointed; I was still so thankful to be alive. I did worry, however, what this would mean for my boyfriend, the person I wanted to marry. To this day I am amazed that he, as a 20-year-old man, was completely accepting of me and my infertility and that never changed, even after he became my husband. Near the end of my pediatrics residency, I came to understand the term baby fever. My coresidents were getting pregnant, my sister was having a baby, and my husband and I were settled down in our very first home. I visited a reproductive endocrinologist. It had been 9 years since I had completed chemotherapy, and I learned my ovaries were not functioning at all. I was told to plan on adoption—of an embryo or a baby—as I was not a good candidate for fertility treatments. At first, I did not allow myself to react to this news. How could I mourn something like fertility when I was a 10-year survivor of childhood cancer, had exceeded my career goals, and was married to a wonderful person? Most of the time, and on the outside, I was unphased. I spoke about my desire to adopt with enthusiasm. I was honest about my ovarian failure and made jokes about being in menopause. I celebrated my friends’ pregnancies and came to love my nephew as if he were my own. I considered the many ways in which I could become a parent, each with its own barriers. Because I had not undergone oocyte or embryo cryopreservation before chemotherapy, having a genetic child was simply not an option for me. I could adopt a baby in need through the foster care system, which would not require monetary payment. However, I knew then and now that the goal of the foster care system is to eventually reunite children with their families; although I was strong, I could not risk falling in love with a child and losing them to reunification. Private adoption was another option. While it felt unethical to pay a large sum of money in exchange for someone else’s baby, I would one day have the luxury of being able afford the price tag (at least $20K US dollars [USD] to $100K USD in the United States, depending on the state and organization). Then, there were the options offered by modern medicine—embryo adoption or in vitro fertilization using a donated oocyte and my husband’s sperm. In these cases, even if my body was unable to sustain an embryo, I could use a gestational carrier (surrogate mother). While I knew that having a baby the old-fashioned way was not without its own costs and risks, it was undoubtedly easier than any of my options. I did not admit—until now—that it hurt to know I would never experience the miracle of pregnancy. It hurt to know that I would never have a child that was half of me and half of my husband. It hurt to know that, even now, my cancer had taken something from me that I could never get back. My experience with infertility has made me thoughtful about how infertility may affect my patients. As a pediatric oncologist, I am painfully aware that many of my patients who lose their fertility from the drugs I prescribe them will travel the same road of grief I have traveled. I am even more aware, however, that most of my teenage patients are not ready to make decisions about fertility—even when they are forced to do so. In my desire to counsel my patients on this topic, I have tried to imagine a scenario in which the advice of a doctor might have prompted me to prioritize fertility preservation. Perhaps I should have been told that delaying cancer-directed therapy by several weeks would be unlikely to affect my disease outcome. Perhaps I would have benefitted from knowing the complexities of the foster care and private adoption systems. Perhaps fertility preservation should not have been a choice at all, but a standard of care, as it is now.1 What I think I needed to hear, above all, was that I did not understand the gravity of my decision. I did not and could not understand the desire to become a parent that would one day overcome me. If I could go back in time and speak to my 19-year-old self, I would say, “it might not matter to you now, but it will matter to you later.” Just days before I originally planned to submit this article, after 12 years of menopause, I experienced the unexpected. Seven positive urine pregnancy tests later, my doctor sent me for an urgent ultrasound, and it was confirmed: I was 6 weeks pregnant. At first, I felt I was no longer worthy of writing this article: how could I speak up about infertility from cancer therapy after having miraculously conceived a child? However, I eventually realized my pregnancy was yet another reason I should write on this topic. Only now, as I hold my daughter in my arms, do I fully understand how much my fertility would come to matter to me. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Maggie Cupit-Link, a third year Pediatric Hematology Oncology Fellow at St. Jude Children's Research Hospital, Maggie will graduate from fellowship and receive her Master's in Clinical Investigations in June. She will then begin a position as a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri. In this episode, we'll be discussing her Art of Oncology article, Our guest disclosures will be linked in the transcript. Maggie, welcome to our podcast and thank you for joining us. Dr. Maggie Cupit-Link: Thank you so much for having me. It's an honor to be here. Dr. Lidia Schapira: It's lovely to have you. I'd love to start just by asking a little bit about your motivation to write and share this piece. It's such an important piece and you really have shown us what was deep in your heart. And then there's this sort of unexpected resolution. Tell us a little bit about what led you to finally finish the piece and share it with the world. Dr. Maggie Cupit-Link: So I've been writing for a lot of my life as a way to express myself and cope with emotions. And I had cancer when I was 19 and 20, Ewing sarcoma. And during my treatment, I found writing was very therapeutic for me and very healing. So that's when I got really into writing about my personal experience and actually published a book after I finished treatment. But then writing more recently, I was writing about my infertility, which I had from chemotherapy. And I would write about it and journal about it here and there because it was really challenging. And for a long time, I suppressed a lot of those emotions because I didn't think they were helpful. And I felt, I guess, ashamed and embarrassed to feel so upset about infertility as a cancer survivor who has so much in life. So many parts of my life are so normal and full and even more full than the average person so I felt like I wasn't really allowed to grieve my fertility. And I started to write a piece because I'm part of a working group, a group of physicians working together to learn more about fertility and pediatric cancer survivors, particularly those who have received immunotherapy, because there are a lot of new agents that we don't know as much about when it comes to fertility. And as I was working with this group, I started writing this piece on my own. And then I was about to submit the piece just to the group to show them my personal reflection when I took a pregnancy test and it was positive. So then I took seven– Dr. Lidia Schapira: -other ones Dr. Maggie Cupit-Link: I was not, I didn't believe any of them. Then finally I called my sister, and she told me that I was not acting like a doctor, that it was very obvious I was pregnant. And so then I went to see my doctor, but I found out I was six weeks pregnant right at the time of finishing this piece. And at first I thought, “Well, I can't write this piece anymore.” But the more I thought about it, the more I thought, “Well, either way, it shows that us oncologists really need to learn more about fertility.” And I'm very blessed and lucky to have this ending in my story, but it shows that there's a lot of missing information out there. Dr. Lidia Schapira: That was an amazing answer, and I have about five different topics now that I want to discuss with you. But let's start with the end. And that is your baby. How old is your baby now? Dr. Maggie Cupit-Link: So her name is Lila Jude. Two days from now, she'll be seven months on June 12. Her name comes from the family name Carlisle. That's where we got Lila. And then Jude comes from the Patron Saint of Hopeless Causes, St. Jude, but also the hospital that treated me and where I've trained, St. Jude Children's Hospital. So that name was very significant for us. Dr. Lidia Schapira: So I'm getting goosebumps and teary just to hear you tell the story. Let's start a little bit with some of the themes that you touched on. The first is when you've said that you've always used writing as a way of processing emotionally complex situations as a patient, now, perhaps as an oncologist. Tell us a little bit about the book that you wrote about your experience. Dr. Maggie Cupit-Link: Sure. When I was in treatment, I wrote a lot of entries in my journal, and it was just a way for me to process things. I think sometimes, for me, I don't know exactly what I feel until I write it down and make myself reflect on it, because I'm a busy body. I'm constantly going and doing. And so during chemo, I couldn't really do it. I had a lot of time to sit, and so I needed to write. And my grandfather is a retired Professor of Christian Philosophy. And during my year of cancer therapy, he and I started writing letters to each other because I had a lot of questions, understandably, about God. So the title of the book is actually “Why God?: Suffering Through Cancer into Faith.” And it's a lot about doubt and my anger towards God and what I would see in the hospital around me, the children who were dying from cancer, who even had it worse than me. It felt very impactful to my faith. But ultimately, through my conversations with my grandfather, he taught me a lot about another way to understand God, another way to understand faith in spite of horrible suffering, which I think is a thing for a lot of people because a lot of people in this world suffer. And so eventually we published a book. During medical school we published it, and it was a compilation of my journal entries intersected with his letters. And so part of it was really personal and raw and journal entry, and part of it was Christian philosophy. So it was an interesting combination. Dr. Lidia Schapira: Well, Maggie, I will definitely now have to get your book and it'll be on my list for summer reading. So you touch on some of the fundamental, sort of ethical, moral principles of our profession, which is suffering and how we deal with suffering. And you've had a lot of time to reflect and philosophize and also experience this, as well as loss. Can you tell us a little bit about how your experience of loss has evolved over the decade of survivorship? Dr. Maggie Cupit-Link: I think initially, loss, for me, meant a lot of different things than it does now. I felt like I lost a lot when I was sick because I had to give up a year of college. I lost my tibia and knee bones. I have a prosthetic knee and tibia now, internal, and they function very well, but I don't have a real leg. I lost, of course, in chemo, you lose your hair. I lost a lot of tooth enamel. I lost a lot of friends because I was a teenager, and teenagers don't handle illness very well. People were afraid to talk to me. And then, of course, I lost my ovarian function. For a while, I think I focused on that a little bit more than what I had gained. But over time, it became very obvious to me that despite all the loss that I had during my year of cancer therapy, I gained a lot more. I gained a lot of perspective and a lot of emotional depth. And then ultimately, what directed me to my career decision. I knew I was wanting to be a doctor before I had cancer, but then after that year, I knew exactly what kind I would be if I got through the year. But I think one thing I've had to learn apart from that is being able to feel loss, even when you have so much. Because I have a lot of gratitude and I have so many good things in my life now with my health and my husband and now my baby and this wonderful career. Even though I have all those wonderful things, I'm still allowed to feel loss sometimes because I will be susceptible to late effects and there will be things in my life that are not quite normal because of going through cancer therapy. And then, of course, the other layer of loss is the people that we lose along the way. If you see behind me in my office, there's a picture of a little boy on the shelf up there. He was my good friend when I was sick. His name is Odie, and he died from hepatocellular carcinoma. When we were sick, he was a good bit younger than me. He was like a little brother to me during therapy. The loss of his life definitely propelled me forward to try to change more for other kids. And I think one thing I struggle with now as an oncologist and I'm still learning to do, is process the loss of my patients as it happens. I think I'm lucky that when I lose a patient, when a patient loses their life, I still see the beauty in what I was able to provide for them and their family. That's still a gift. I feel that it's important for me to grieve the loss of their lives, and I'm working on finding, like, the best way to do that for me over time. Dr. Lidia Schapira: You will find a lot of reflections on this topic in the pages of Art of Oncology over the last 20 plus years. I think that is a very, very common theme. I'm really impressed with how well you just understand the importance of this, to stay emotionally healthy and resilient. My next question addresses that a little bit, and it has to do with processing the early experience of being a cancer survivor. As a young medical student and as a young physician, what was that like for you? Dr. Maggie Cupit-Link: I think early on, I had a lot of guilt when it came to being a survivor. This concept of survivor guilt, I think you can read about it as well, and I'm sure there are some articles in the Art of Oncology about it. But the idea that, like, ‘why me?’ and when I encounter patients who go through similar diseases or experiences that won't have good outcomes, ‘why? Why me? Why did I get a good outcome and they didn't?’ And so early on, I struggled with that more. I felt guilty about it. I think over time, I recognized that the guilt– I mean, I always knew it was illogical. That doesn't mean we don't feel it. I think over time, I've recognized the guilt as unproductive. And so I tried to empathize with myself about it and acknowledge that I feel guilty. But then instead, what can I do with this feeling that's helpful? So where can I put this? What can I do to make things better for somebody with it? And I think that I've been able to do that better as time has gone along. I also think that early on in my survivorship, I thought that I had even more ability to understand patients' perspectives than I did. And I learned quickly that everybody's experience, even another 19-year-old with Ewing sarcoma who had to leave college, is so different. And so I've been humbled along the way in learning that just because I understand part of their experience does not mean I understand their experience all the way, and that I should never assume that I do. I should always listen and wait to try to understand more about what's different about their perspective. Dr. Lidia Schapira: I'm surprised a little and maybe delighted to hear the wisdom in your words. You are so young and yet you know so much. Did you have any mentors during medical school and residency who helped you process this? And then playing it forward, how do you imagine now that you're going to be an attending, mentoring others who may be the young Maggie and come under your tutelage? Dr. Maggie Cupit-Link: I've had a lot of mentors, for sure, in life. I've been in therapy pretty much my whole life. I'm really lucky that my grandmother is a PhD psychologist and she's a clinical counselor. And so from the time I was a child, if there was ever a problem, I would go see a therapist. There was no exception to that, especially when I became... /episode/index/show/aoopodcast/id/32206457

Three Days was Enough: Accepting Hospice Care 07/09/2024

Three Days was Enough: Accepting Hospice Care Listen to ASCO’s Journal of Clinical Oncology essay, “Three Days was Enough” by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. The essay is followed by an interview with Thomas and host Dr. Lidia Schapira. Having medically adjacent experience, Thomas shares her personal story of helping her family come to terms with hospice care for her father. TRANSCRIPT Narrator: , by Teresa Hagan Thomas, PhD, BA, RN My dad agreed to receive hospice on a technicality. It happened after weeks of trying to get him home oxygen. My brother drove him to the oncologist’s office, and I helped him get into the wheelchair. He did not complain, but just asked me to hold his coffee mug, smiling because I snuck him a fresh donut. Three months before, dad was well-maintained on treatment for a neuroendocrine tumor. It was not until two separate, non–cancer-related hospital admissions kept him off treatment that the cancer saw a chance to hijack his body, take over his organs, and lead to a precipitous decline. As we waited for the oncologist, I told dad not to downplay his shortness of breath. But he wanted to look good enough to get chemotherapy the following week, the only way he saw to resolve his lymphedema and keep the cancer at bay. He failed the oxygen saturation test by one point, and having not qualified for home oxygen, we drove home disappointed without further recommendations or support. The sense of defeat was maddening. We were batting down an escalating onslaught of health issues at home only to be turned away from the professional caregivers when we most needed their advocacy. I was enraged that all the work arranging the appointment led to nothing and disappointed for my dad as he sat consumed in his pain and shortness of breath. His oncology team was supportive when his health was stable but did not have the skills or systems to proactively help us manage the dying process. I channeled my disillusionment with the health care system by calling in favors for a palliative care consult, both aware of my privilege but also stopping at nothing to give relief to my dad. A few days later, my dad and mom were willing to accept hospice care for the singular purpose of getting oxygen. I was sitting next to my dad in his home office, amix of posters from his travels abroad and family wedding photos surrounding us. When he asked for my thoughts about hospice, I carefully laid out what I saw as the benefits—namely, he would immediately qualify for home oxygen and get a level of care beyond what his oncologist could offer. But as I tried to give him all the words I knew from my professional life, I just saw the man who raised me staring back at me hoping for a way out of the painful, weak state he was in. He was not giving up on treatment or controlling the cancer. I was not going to change that. I wanted that, too. Now his eyes were sunken, all the fat gone from his face, and his entire body working to breathe. His belly was large, the tumor taking over, and his legs swollen with lymphedema. I felt the boniness of his shoulders and back. There was no coming back from this. I was in disbelief that he was dying so quickly, selfishly wanting him to stay but also knowing he deserved a pain free death. He agreed to enroll in hospice, with the plan that he would unenroll and try to get more treatment. I wanted to be right there with him, treating this as a temporary detour and not the end. I looked him directly in the eyes, searching to see any recognition that he would never get treatment again and that this was it. Not seeing anything, I tried to open the door to discussing death, reminding him how tenaciously he had fought to keep this cancer controlled and acknowledging the need to focus on his quality of life. I desperately wanted to have an open discussion about dying, but his stoic Irish mentality kept us from having that heart-to-heart. Initially, I was disappointed that my attempt had failed, but now I recognize that achieving a good death did not depend on verbalizing that he was dying. He was living and dying, hoping and accepting, trusting and doing his own thing. Our plan was logical and irrational. I remember thinking people in these situations needed to face reality. Here with my father, being so direct would be counterproductive. He very likely recognized what was likely to unfold, and hospice allowed him the unstated permission to let go. I called his oncologist, and together dad and I asked to enroll in hospice. The oncologist responded, “We are so glad you finally made this decision.” By that night, the hospice nurse was sitting at my parent’s kitchen table preparing us. Dad was sitting in the front room, finally relaxing in the plush leather lift chair we impulsively bought for him, with the oxygen machine humming at this side. We grilled the hospice nurse with questions. She kept saying how fast patients with cancer seem to go downhill. She told us without telling us. She gave us breadcrumbs, just enough information to get us through each step of the dying process, giving morphine, getting a hospital bed, giving Ativan, and finally seeing him pass. Three days after enrolling in hospice, he died at home withmany of our family at his side. Just like the hospice nurse said he would, he died on his own terms: after he had said goodbye to all his siblings, after the infant he and my mom were fostering was placed with his adoptive parents, and after all five of his children were at home with him. He died with dignity, mentally capable until the last hours, and surrounded by love. His exact terms. I am not sure what conversations were had between my dad, my mom, and his oncology team in the weeks before he died. I do not know if they openly discussed the need for palliative care or hospice. Dad’s providers might have, and my parents willfully or naively missed the clues. I can imagine for the oncology team, discussing hospice meant admitting that the treatment plan had not worked as intended and that they could not meet my dad’s needs. I know for my parents, discussing hospice would give air to the idea of death and therefore was not only avoided but actively discounted. As a researcher focused on palliative care, these dynamics were not new to me. I recognize how the stigma surrounding hospice and palliative care prevents earlier provision of quality end-of-life care. That knowledge did not prepare me when it was my dad dying. Awakening to the reality of dad dying was incredibly difficult when every hour we were managing his frenzy of health issues. Three days is used as an indicator of poor end-of-life care since people are eligible for hospice when they have a 6-month life expectancy.1 My dad did not openly discuss hospice until days before he died, but the number of days did not matter for my dad. What he was now able to do—because of hospice—during those days mattered more. During his last 3 days, dad meticulously rewrote his will, had it notarized by a hospice social worker, visited with his siblings, and made amends for long-past transgressions, enjoyed his favorite foods—fresh Boston cream donuts and black French press coffee—and spent quality one-on-one time with each of his kids and most of his grandkids. Although death was never directly discussed, neither was the idea of unenrolling in hospice. Hospice was what was allowing him to maximize the mental and physical capacity he had left. Those 3 days took my family from being stressed to our limit trying to manage dad’s disintegrating health to feeling like we were being led by competent, caring hospice nurses who picked up our phone calls and responded within minutes. Now a year since he passed, I have a newfound appreciation for the complexity of discussing death with families and an even greater desire to advocate for improved end-of-life care for patients with serious illness. Despite his dramatic decline in health, my dad had a good death thanks to his hospice team. Three days was all it took. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. In this episode, we will be discussing her Art of Oncology article “Three Days Was Enough.” Our guest’s disclosures will be linked in the transcript. Teresa, welcome to our podcast and thank you for joining us. Dr. Teresa Thomas: Thank you. It's great to be here. Dr. Lidia Schapira: It's great to have you. So let's talk about your beautiful piece, which is very personal. Thank you so much for writing and sending this and sharing this. In your piece, you say that you waited about a year before you thought about writing. Can you tell us a little bit about why you waited and why perhaps for you it was important to take some time to process the experience and then decide to share it? Dr. Teresa Thomas: Absolutely. Well, I think it would be false to say that I waited a year to write it. I think I was writing it for a year. And like a lot of researchers, I really process things through writing, trying to make sense of the passing of my father, of course, but also what this means for me professionally. It's very ironic that everything that I study in my research, things that we encounter clinically, unfolded right there extremely poignantly with my father. And like anyone, I'm just trying to make sense of it and trying to find lessons learned where we as nurses, healthcare providers, researchers, can push things forward a little bit, which I think is what I was trying to do with the piece because it did raise a lot of questions for me and is making me rethink my research questions and how I conduct myself and what the important areas of our field really are. Dr. Lidia Schapira: So let's talk a little bit and go deeper into that. First, I wanted to talk a little bit about your vulnerability, personal vulnerability. It's your father we're talking about, and you clearly adored this man who is your father. Can you talk a little bit about the emotional aspect of dealing with the family's acceptance finally, or the family's readiness to call hospice in? Dr. Teresa Thomas: Absolutely. I mean, it's all of the emotions. When I think about it, it was this very awkward place of being one of the few medically adjacent people. I'm not a practicing clinician. I am a researcher who has a nurse training. So it was this ‘I know enough and the family's relying on me and I'm going to the appointments.’ And being that in between, between the oncology team, my father, my mother, my siblings, people asking questions. And at the same time, I know this story. So it was personal and distant. I knew what was happening, that he was dying. I didn't want to know that he was dying. And it was just a crazy time too. Every day there were a thousand things going on. I didn't put this in the piece, but I was also extremely pregnant at the time, so had hormones going. My mom was getting sick herself with cancer, ironically, right as my father was dying. It was just absolutely insane. And now we're trying to unpack all of that. But to be that person that people are relying on to understand what's going on, to shepherd them, and also not really wanting to know, it was a hard juxtaposition. I knew what should be happening, right? I knew that we should be having these discussions about palliative care. I knew that he was eligible for hospice, I knew he should be on hospice, but I wasn't ready. And professionally, I wear that hat of a nurse and a researcher very reluctantly. When I'm dealing with my health care, and especially someone else's healthcare, I do not disclose, I do not try to interfere. And for Dad, I had to step up and push and interfere a little bit, which is extremely awkward and not comfortable. Dr. Lidia Schapira: Let's talk a little bit about readiness, because readiness means so many things, but it's such an important theme here, and it's often such an important theme when we look at the literature about end of life communication. Can you talk a little bit about how this experience has informed the way you think about readiness, readiness to accept that it is indeed time for that call to hospice? Dr. Teresa Thomas: Absolutely. So I think as a researcher and as a clinician, you want that discussion, you want the documentation, you want all the ducks in a row. You need to understand, do they get it? Is their head in that space where they're making plans? Can you think about what you want your death to look like? We need it said, we need it laid out so that we can check that box. And obviously, there's a lot more than checking boxes when this is done correctly and in a patient centered way. We didn't have time for that to happen, and yet everything still laid out. Now, I write in the piece, my dad was just very stoic and had a history of not talking about emotions. And I don't think it's all too different than his generation. And maybe men in general or there are patients that are just like that. There were never those deep conversations with the oncology team. There basically wasn't that conversation even with me. So beyond that, I mean, beyond just saying we had that conversation, what the piece is trying to say, or what I was trying to say was that it was the things that he did that were more important, he literally rewrote his will in his last days. In his few moments of clarity, he was sitting there. He was a wills and estates attorney. So, I mean, he was fully equipped to do this, but this is what he was doing. He knew that he was dying. He never voiced it. He never made a specific plan. But we had a care team in his oncology team, and absolutely in his hospice team, who just shepherded us and allowed him to do everything that he would have done even if he had had six months in hospice. And that's what was more important. He got what he wanted, and he was allowed to do what he wanted. And that's now how I'm thinking about end of life care and where our field in research and in executing that needs to go. Dr. Lidia Schapira: I think that's incredibly profound. I think one of the lines that I enjoyed the most in reading and rereading your essay is when you just describe what actually happened and how he relaxed into the chair. He relaxed when he had oxygen. I mean, it wasn't so much what he said, but what you saw there was even the physical signs of somebody who says, “Well, you know, something else is happening here.” There was a transition that you actually appreciated there and captured. Am I right? And did I read that right? Dr. Teresa Thomas: Absolutely. That was the turning point. I mean, we are a big family. We never make impulse purchases. But my sister and I, we just drove out. We didn't care about the cost. I think my mom gave us her credit card. She never gives us a credit card. And we just said, “We don't care. This is our dad. We're buying this.” And to see him after this, just extremely precipitous decline where every breath in and out and that searching for air and all of those signs, even to take away a little bit of that, absolutely felt so good. And he wasn't totally pain free, but he had oxygen. I mean, the most basic thing you need. So, yes, that was a very good feeling. Dr. Lidia Schapira: So the labor of breathing can be overwhelming and in a way distressing. Whether we call that painful or not is maybe just a matter of the language that we use. There's another theme that emerged in your writing, and again, I wanted to hear your reaction to this, and that is failure. You use the term in terms of, in so many different ways, perhaps the failure of the oncology team to develop or deliver or propose a treatment that was really good. They were done. So they- in some ways, there was a sense of failure. It was a bit of a failure of capturing the right moment to make the hospice referral. It wasn't quite what the books say we should be doing. There's a lot of that in the essay. Can you talk a little bit about how you understand failure and how that concept may in some way interfere with our ability to act or appreciate things? Dr. Teresa Thomas: There were no specific failures as more of a secondary caregiver at the end who stepped in to assist my mom. There were likely things going on that were under-recognized, unappreciated, or because nothing was said directly that there could have been soft leeways into. “Let's talk about hospice.” That, I think, my parents did not want to hear, and that door was closed. That's where additional layers of support in how do we talk about this as a family? How do we introduce, well, hospice isn't end of life care necessarily, but there are additional supports that hospice allows that your typical oncology practice can't provide. I remember one conversation when my mom called me up and she was telling me that she had just met with Dad's team, and she was saying, the oncologist said, this is the last treatment, that after this, there's nothing left. She was going on and on, and I wanted to basically rip the band aid off for her. And I said, “Mom, they're telling you that it's time for hospice.” “No, absolutely not, Teresa. Hospice was not brought up. Don't bring up that word to your father. All they were saying was, this was the last treatment.” Now we can talk about that with my mom and say, “Do you see what they may have been laying the groundwork for?” And she says, “Yes, now I understand. But at that time and place, that soft entry, that door was not being opened by them.” And I don't think that's untypical. I think that we did the best that we could with the situation that Dad had. Dr. Lidia Schapira: So, Teresa, I'm struck by the incredibly generous and wise framing that you use to talk about this. You could have said, “Oh, my goodness. It was only three days,” and instead you chose to say, “Three days were enough.” So I wonder how you did this, how you actually looked at it from that perspective, because so much of what happens to us is defined by the lens through which we see it and the words we use to construct the narrative. So tell me how you got to, “Oh, my God. They weren't ready, and there was so much failure,” to, “Hey, three days was enough.” Dr. Teresa Thomas: The three days were important for me because one year ahead of my dad getting sick, I was writing a paper with one of my mentors, Yael Schenker, and one of the wonderful med students that we work with and we used it as an indicator of poor quality end of life care. Did the patient enroll in hospice within the past three days? And we had these wonderful discussions with Yael and Bob Arnold and Doug White and everyone here at the University of Pittsburgh involved in palliative care about what does that mean? And is this just a random quality indicator with no real world value? And I respect all of their opinions because they do see this clinically, whereas as a researcher, “Oh, this is easy for me to analyze and I have a citation that says this is a quality indicator, so let's use it.” And I thought, “Oh, isn't the world ironic? This is exactly what happened with Dad.” And it was. I mean, maybe part of it is to our Catholic faith, and threes are very important so I think that was a little for my family. But there was nothing else to do. We opened up, we had conversations, we had heart to hearts. We found when dad was mentally with it, we sat down with him. I gave him his coffee. He always had a doughnut, he was pre-diabetic. Who cares? There was ice cream, there were donuts, there was... /episode/index/show/aoopodcast/id/32054477

'Patient is Otherwise Healthy': The Challenges of Cancer Survivorship 06/25/2024

'Patient is Otherwise Healthy': The Challenges of Cancer Survivorship Listen to ASCO’s JCO Oncology Practice essay, by Dr. Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital Adult Cancer Survivorship Clinic at Yale Cancer Center. The essay is followed by an interview with Capozza and host Dr. Lidia Schapira. Capozza shares his personal experience with the long-term effects of cancer treatment. TRANSCRIPT by Scott J. Capozza, PT, MSPT Let me start by saying: I know I am one of the fortunate ones. Being diagnosed with cancer at any age puts many in a tailspin. I was no different when I was diagnosed with stage II testicular cancer at age 22 years. I was still in graduate school, completing my physical therapy program; suddenly, I had to schedule an orchiectomy, retroperitoneal lymph node dissection, and two cycles of chemotherapy around lectures, laboratory work, and practical examinations. Fast forward 20 years and I have an unbelievably supportive wife who has seen me through so much of my long-term survivorship concerns. Despite my fertility challenges, we are so very fortunate that my wife was able to conceive three healthy, happy, and strong kids (conceived only through the roller coaster that is fertility preservation and reproduction medicine, which so many adolescent and young adult survivors must deal with and is emotionally very challenging, but that is a discussion for another day). I have a great career as a board-certified physical therapist in oncology, where I can help enhance the physical well-being of patients throughout the cancer care continuum. The journey to this path as a survivor was not a straight line, though that also is a discussion for another day. What I do not remember signing up for was all the late and long-term side effects of cancer treatment, or maybe I did sign for them in a sort of deal with the devil so that I could finish PT school on time and return to my precancer life of running and being with my friends. We sign on the dotted line to rid the cancer from our bodies, but just like the mortgage, student loans, and back taxes, we end up having to pay in the end. Unfortunately, paying off this debt comes with a high interest rate (a multitude of adverse effects) heaped on top of the principal balance. And while it would be very easy to blame my hyperlipidemia on my cancer treatments,1 I am pretty sure there is a likely strong genetic component. My grandmother had high cholesterol for as long as I could remember. As your quintessential Italian grandmother, she was 105 pounds soaking wet and ate like a bird (while being insulted if I did not have a 4th helping of her lasagna) but had to take her blasted pills for high cholesterol for all her adult life. She died a month short of her 103rd birthday and was still sharp as a tack until the very end. I will gladly sign on the dotted line for that outcome. My immediate postcancer treatment years were great. I resumed running and ran several marathons, returned to a relatively normal social life, and started along my career. I met my wife, and she was enthusiastically willing to live her life with a cancer survivor. Marriage, house, kids, job…everything was going great. Until things started going downhill. About 10 years postchemotherapy, I noticed that my exercise tolerance was decreasing. It was harder and harder to keep up with friends on our long runs. I felt more fatigued overall. I went from running 10 miles to seven to five to now barely being able to complete two miles. My chest would feel tight as if a vise was clamping down on my ribs. Running up short hills in my neighborhood, which I had routinely done in the past, felt like I was ascending Mount Everest without supplemental oxygen or Sherpa support. When I brought this up to my primary care physician, he looked perplexed. I am young(ish), no family history of heart disease, nonsmoker, healthy weight, and only enjoy a hard cider once a week. He performed an ECG in the office, just to double check to make sure I was not crazy. When my heart rhythms started throwing out inverted T-waves, his eyes got larger. He said that I did not fit the description of someone who should be experiencing these symptoms. “I had cancer, remember?” I remind him although he is very familiar with my medical history and we know each other well. “Oh. Yeah.” My doctor nods…. My doctor thankfully took my concerns seriously and directed me to a series of referrals to cardiac and pulmonary specialists. Through the Pandora's box which is patient access to electronic medical records, I was able to read his postvisit report. He very accurately described the results of the physical examination and our conversation. He did write in his report that he would be placing referrals to cardiology and pulmonology. It was a very thorough evaluation, and I could tell that he was truly listening to me and not dismissing my concerns. What caught my eye, though, was the opening line to his assessment: “Patient is an otherwise healthy 42-year-old male…” Otherwise healthy? I have high cholesterol; had to endure heartache and struggle to have a family because of treatment-induced fertility issues; I wear hearing aids because of cisplatin induced ototoxicity; and now, I have to go for a full cardiopulmonary work-up, all because, I had testicular cancer at age 22 years. To me it did not feel like that I was otherwise healthy. To further work up my symptoms, I was scheduled for cardiac testing. I have a new appreciation for what my own patients go through when they have to get magnetic resonance imaging (MRI) after I had a cardiac stress MRI. I had no idea just how tiny and claustrophobia-inducing an MRI machine is, so now I nod my head in agreement with my patients when they tell me how anxiety-producing it is to get an MRI. I had a treadmill stress test and echocardiogram, and these all came to the same conclusion: I have a thickened left ventricle in my heart, which throws off the ECGs but is just my normal anatomy. Phew. When I went for my pulmonary function test (PFT), though, the results were different. The pulmonologist came in with that same perplexed look, as he is expecting to see someone other than an early 40s, healthy weight individual sitting there. Our conversation went something like this: Pulmonologist: Do you, or did you ever, smoke? Me: No. Pulmonologist: Do you have carpets, rugs, or animals at your house? Me: No. Pulmonologist: Do you work in a factory or someplace where you're surrounded by potentially toxic chemicals? Me: No. Pulmonologist: Do you think you gave your best effort on the PFT? Me (slightly annoyed): Yes. Pulmonologist: I don't get it; you have the lungs of someone with chronic obstructive lung disease, but you don't fit into any of the risk factors. Me: I had bleomycin as part of my chemotherapy regiment for testicular cancer 20 years ago. Pulmonologist: Oh. Yeah. Oh. This is the crux of long-term survivorship: We look OK on the outside, but inside our body systems deteriorate faster than the noncancer population.2 For pediatric cancer and adolescents and young adult cancer survivors who could potentially have decades of life ahead of them, these late and long-term side effects are a perpetual consequence for surviving cancer. There is no light at the end of tunnel for us; the tunnel extends endlessly, and we grasp for any daylight we can to help us navigate the darkness moving forward. While there have been multiple studies addressing the long-term toxicity sequelae of cancer therapy, there is still inadequate understanding of optimal screening, risk reduction, and management and inadequate awareness of potential late effects among both medical professionals and survivors alike.3 Given the complexity of long-term toxicities for long-term survivors, a multidisciplinary team of health professionals can provide a comprehensive approach to patient care. For me, a key member of this team was the cardiac advanced practice nurse, who called me at 4:45 pm on a Friday afternoon to tell me that my cardiac evaluation was normal. Physical therapists do this by addressing fatigue, balance deficits, and functional decline through our multitude of rehabilitation tools. Cardiologists, pulmonologists, primary care physicians, dietitians, and mental health care workers can all meaningfully contribute to the well-being and long-term care of cancer survivors. The many health care providers in the lives of cancer survivors can also empower through education. However, the education pathway ends up being a two-way street, as so often it is the survivor who has to educate the nononcology provider about our internal physiological needs that belie our external appearance. As for me, I am trying out new inhalers to help with my breathing. I take a low-dose statin every morning with breakfast. I am now plugged into annual cardiac follow-ups. I do not run anymore, though, as the psychological toll of not being what I once was has affected me more than the physical toll. I march on, trying to be the best husband, father, physical therapist, and cancer survivorship advocate that I can be. While we may be living clinically with no evidence of disease, we live with the evidence of the history of our disease every day. Like petrified trees or fossilized shells, cancer treatments leave permanent physical and psychological reminders of our cancer experience. As greater attention is being focused on the optimized management of long-term toxicities in cancer survivorship, my sincere hope is that there will be effort to educate cancer and noncancer medical staff alike about the real physical and psychosocial adverse effects as well as advances in treatment that will both prevent development of long-term toxicity and yield better solutions for when they do occur. I hope better options will be available to all cancer survivors with all stages and all disease types in the not-so-distant future. I am OK, really, but I am not sure ‘otherwise healthy’ really applies to me. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Scott Capozza, Board Certified Oncology Physical Therapist at Smilow Cancer Hospital at the Yale Cancer Center. In this episode, we will be discussing his Art of Oncology article, “Patient is Otherwise Healthy.” At the time of this recording, our guest has no disclosures. Scott, welcome to our podcast and thank you for joining us. Scott Capozza: Thank you very much for having me. This is a great honor. Dr. Lidia Schapira: I look forward to chatting with you about this. First of all, what a great title. How did the title and the idea of sharing your experience with this audience, the readers of JCO OP and JCO publications, come to you? Tell us a little bit about the motivation and the inspiration. Scott Capozza: So the title actually came from my doctor's note, as I alluded to in the article, the Pandora's Box, so to speak, of patient access to medical records. I was reading his assessment of my regular wellness visit. And in that visit, I had discussed that I was having some breathing issues and some endurance issues with running, and I just didn't feel myself. And I knew that I hadn't had any significant cardio or pulmonary workups anytime recently. On top of that, we'd already discussed some of my other comorbidities, like my blood pressure, that sort of thing. So his intro line was “Patient is a 42-year-old otherwise healthy male.” Well, that's what caught my eye. I said, “Am I really otherwise healthy? I've got high cholesterol. I have this history of cancer. I am dealing with all kinds of late effects, and we're working those late effects up. And so am I truly otherwise healthy?” And I love my PCP, and he listens to me. And so I'm grateful for him and for him taking me seriously, because not everybody has that. Not every survivor has that person, that quarterback, so to speak. So that was really what kind of drove me to write the article. It was just an idea that it was in my head. I did not write the article right away. I'm now 48. So this was actually even a couple of years ago. But I think I wrote it because I really was writing it more for the non oncology provider, for the PCPs, and for the pulmonologists and the cardiologists who don't work in the oncology space like you and I do, to be cognizant of these late effects. And just because somebody is a year out from treatment, five years out from treatment, or in my case, 20 years out from treatment, that these late effects are real and they can play havoc with our quality of life. Dr. Lidia Schapira: So let me talk a little bit about nomenclature and the semantics. You know this field very well, and you know that not every person with a history of cancer identifies as a survivor. But the term is really helpful for us. And in the original article that Fitzhugh Mullan wrote in New England Journal called the “Seasons of Survival,” he reflected as a physician with cancer that you go through different periods in your survivorship, journey or life. Can you tell us a little bit about that and what it's been for you? When did you feel that you were a cancer survivor? Do you use the term and what have those seasons or those stages felt like for you? Scott Capozza: That's a great question. And for my old patients, I have this conversation with them as well. For me specifically, yes, I do identify as a cancer survivor. I will say, though, that when I was going through my treatments, I did not identify with that word. I also think that because I was young, I was 22, 23 at the time of my diagnosis, and I did not want any association with cancer, that I really did not want that label attached to me. At that time, I was a physical therapy student and a runner. Full disclosure, I'm a Boston Red Sox fan. You can hold that against me if you want. So I didn't want this extra label, so I didn't want it anyway in the first place. I do, I remember having a conversation with my nurses, and they said, “Oh, you should go to this walk or whatever that was happening for cancer survivors.” And I said, “But I'm in the middle of chemo. I've still got my port. And I don't think I should go because I'm not done with treatment.” And so that's why I think it's great that we have, the American Cancer Society and NCI have come out with very clear definitions that say that a person is a cancer survivor from the mode of diagnosis, and I use that for my own patients as well, because they have that same question. They ask me, “Am I really a survivor? Am I really done?” That sort of thing. And I say, no, I go by those definitions now. And so I always frame it as, you have to survive the words “You have cancer.” So that's me with the relationship with the term survivor. To your other point of the question, as far as the seasons of survivorship. Absolutely. And I think that we see this more prevalently with our younger population, with our pediatric survivors, and for me, as an adolescent, young adult survivor, an AYA. So I have gone through these seasons of survivorship. When I was diagnosed, I was young and I was single and I was finishing school. That's one thing. I was not dating anybody. So when I did just start to date somebody and move towards marriage and that sort of thing, and all of a sudden, now my fertility issues, because of my treatments, now that came to the forefront. So that became a new season, so to speak. How are we going to tackle that? And now as a father, that's a different season because I have three children, two boys, and it's on my mind that they have my genetic makeup. So are they at higher risk of developing testicular cancer because of me? So I'm in a different season now than I was when I was single and 25. Dr. Lidia Schapira: And so you also talk about having cisplatin induced ototoxicity. And now this latest problem, which is the bleomycin induced lung problem. That is what sort of unraveled this new season of trying to put these pieces together. How have you thought about this and perhaps shared it with your wife and your family? This idea that the exposures you had to toxic drugs which cured you and gave you this fortunate possibility of being a long term survivor keep on giving, that they keep on manifesting themselves. And fortunately, you have, it seems, a very receptive primary care doctor who listens but may not be particularly able to guide you through all this and may not know. So he's sort of taking his cues from you. How do you negotiate all this? The idea that there may still be something that's going to happen to you as a result of these exposures? Scott Capozza: Being vigilant, I think, is really important. And I think open lines of communication with my providers, open lines of communication with my wife. And also, again, my children are at this point now where I can have those conversations with them. I don't think that I could have done that when they were younger, but now I think they can start to understand why daddy wears hearing aids now is because daddy had to get a certain medicine to help get him healthy, to help get rid of the cancer. So to frame it in that context, I think it makes it easier for them to understand why I have this cytotoxicity from cisplatin. And they even know now with my pulmonary issues that daddy can't necessarily run with them. That was always going to be a goal. I was going to be able to run with my children, and I can't do that. I am still able to bike. It does not stress my pulmonary system as much as running does. So we are able to cycle as a family, and so we are able to do that. But as far as other late effects that might show up another five years or 10 years from now, those are things that I will continue to have those conversations with my PCP to say, do we need to continue to do cardiac screening every so often? Do we need to continue to do pulmonary screenings, blood work, that sort of thing? I also know that I am very fortunate that I work in the field, so I am surrounded by it, which sometimes is good and sometimes can be a little discerning, knowing what's out there also. So it is an interesting balance to be able to wear both of those hats at the same time. Dr. Lidia Schapira: I have a couple questions that arose to me reading your essay. Now, I am an oncologist, so I know you know about these late effects. One of your lines is, this is the crux of long term survivorship that is appearing healthy, being labeled as otherwise healthy, but really having these exposures that predispose you to getting other illnesses and diagnoses. Do you think it would help if your PCP and pulmonologist wrote that you had an exposure to bleomycin in requesting the PFTs? Instead of just saying 42-year-old with such a symptom, 42-year-old with an exposure to bleomycin and dyspnea. Do you think that writing that in your chart, instead of just saying ‘otherwise healthy’, just putting cancer survivor, testicular cancer survivor, and adding the exposures every time they require a test, could that in any way have made your life easier as you reflect back on the last few years? Scott Capozza: That's a really interesting question. I never thought of that before, and I think that could go one of two ways. A, it could be validating, but I could see the flip side of that where it's, you're constantly reminded of it. So I don't know that there's a perfect answer to that. I don't know what I would prefer, honestly. If we could hop back in time and change the documentation, then we make an addendum... /episode/index/show/aoopodcast/id/31824937

The Road Less Traveled: Perspective From an Australian Oncologist 06/06/2024

The Road Less Traveled: Perspective From an Australian Oncologist Listen to ASCO’s Journal of Clinical Oncology essay, “” by Stephanie Hui-Su Lim, Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. The essay is followed by an interview with Lim and host Dr. Lidia Schapira. Lim shares her thoughts as an oncologist dealing with a patient that has decided not to continue with treatment. TRANSCRIPT Narrator: “” by Stephanie Hui-Su Lim He had been diagnosed with metastatic colorectal cancer in his late 30s and was responding well to first-line treatment. Physically fit, with a good tolerance to therapy, there was no stigma of sickness or telltale signs of cancer lurking around him. His partner usually attends with him, offers polite nods, few questions asked, but you could sense her underlying nervousness and fear of the unknown. Between the short phrases of broken English and the interpreter talking, consultations were usually pleasant, the right questions were asked, and I would end the consultation by asking how his family was doing back in Vietnam. Born to Chinese-Vietnamese parents in a city on the outskirts of the capital, he migrated to Australia 10 years ago. He worked hard, exercised, ate a healthy blend of an Asian and Western diet, and check-boxed all the requisites to build a good life. On this occasion, his cancer was slowly progressing although remained largely asymptomatic. His optimism stayed stable, and he kept his full-time job. I discussed switching treatment. “Do you have any questions?” As I shuffled the consent form, information sheets in Vietnamese, pathology form, imaging request, and follow-up bookings, I waited for the interpreter on the other end of the phone to speak. COVID-19 was still lingering, and our face-to-face interpreter service had largely been replaced by phone calls. My now 40-year-old patient, alone today in the clinic room, looked at me and the care coordinator, then spoke something to the phone. The voice on the other end said he has no questions, he is “keen to get on with it.” “Ok then, we'll get him to sign here, and I'll need your healthcare interpreter number too.” An exchange of words ensued, perhaps some things were repeated over. Then my patient smiled, and waited. “He says thank you doctor but he doesn't want any treatment.” It was not the answer I was expecting. I had explained his slow disease progression, multiple lines available, and good tolerability of treatment, maintaining his quality of life and maximizing survival. I had gone through the projected life expectancy at this point, which was still measured in the order of short years if we pursued all standard therapies. “Can you ask him again? That he does not want any treatment?” Perhaps the interpreter had not relayed what I said. Perhaps I had not emphasized the benefits of continuing treatment. Perhaps there were misplaced reasons for declining evidence-based treatment, the clues of which I had learned to pick up quickly, gleaned from conversations over family dinners from my own family of migrants. When my patients decline treatment in a context where the clinical benefits clearly outweigh potential harm, I often feel I have not done enough. If I spent more time talking them through their decision making, guiding them through hypothetical what-if scenarios, then would we have gotten to the same page? Was I sure they were compos mentis? Should I call the other listed relatives and have the same conversation with them? In his case, he had made a capable and informed decision. We are used to the well-trodden path of exhausting appropriate standard treatment before transitioning to a best supportive care approach. However, when patients choose the less traveled path where their cancer journey and life expectancy are truncated by choice, we may struggle to understand their decision. I felt a sense of frustration at his polite declining of potential years of life and unfairness when the next patient, unfit and exhausted of all therapies, begged for more treatment options or anything that could give them another extra day. I sought to try to better understand the reasoning behind his decision. I have encountered many culturally and linguistically diverse (CALD) patients throughout my journey as an oncologist and personal experiences in my own migrant family. Our health district has one of the most diverse populations in the state, with one in 10 having limited English proficiency. Almost half the population speak a language other than English. We often see as many interpreters as patients in the waiting room, multiple extended family members crowding into small consult rooms, and multitude of language translations of patient booklets being the only recognizable information to new patients in an otherwise foreign cancer center. I understood the importance of cultural awareness, and that cultural differences feed into decision making. But what were the beliefs, concepts, and cultural norms that shape what they do and value? An Australian study investigating the attitudes of Chinese migrant patients toward cancer identified several key areas including the nondisclosure of a poor prognosis, importance of family in mediating between health professionals and patients, incorporation of Chinese culture–specific treatment, importance of interpreters, and psychological and spiritual support. Chinese patients use combat strategies on the basis of traditional Chinese medicine, Chinese beliefs of food to maintain health, exercise with Qigong, Feng Shui/spatial organization, and ancestor worship. Chinese illness conceptualization includes concepts of karma, fate, and retribution. There are recurring themes that arise, with another study highlighting the importance of the Chinese beliefs in fate and luck, ying and yang, stoicism as a coping mechanism, importance of family, fear of losing face, and denial of diagnosis as a means of protecting the family. A common thread of family playing an essential role, rather than a patient autonomy approach, was evident. There is a need to incorporate these beliefs into culturally appropriate programs. Sadly, not much is known about the cultural impacts on patient decision making. Research into race, culture, and ethnicity is thought to be too restrictive. Research investigating interventions to improve patient-centered care and participation in the treatment process in CALD has found positive effects of culturally tailored video and patient navigator interventions. A recent review also found patient navigation as an effective strategy in improving patient care, from screening through to diagnosis, treatment initiation, and likely also in the active treatment and survivorship phase. Importantly, cultural barriers were evident. An Australian study looking at CALD needs in outpatient cancer clinics highlighted the importance of recognizing language-related needs and care teams adapting practices and available resources to make it work for CALD communities. Work in other CALD groups has also focused on the triadic relationship between the patient, the patient's family, and physicians. Latin American women who were less acculturated deferred to their families or friends to make treatment decisions, highlighting the importance of familism as one of the most culturally specific values for Latinas. Loyalty and solidarity among members of the family are integral to decision making. Asian and Latino patients are seen to have a higher rate of patient passivity because of cultural norms that respect physician authority. A systemic review of cancer beliefs in minority populations, the majority based in United Kingdom and United States, found low health literacy, fatalism, and stoicism as common themes. Decision making in a systematic review, with a predominant African American minority group, found the themes of spirituality, fatalism, and acculturation to be important in the treatment decision process. Ultimately, all these cultural beliefs and concepts feed into how patients decide which treatment road they wish to take. Shared decision making models in ethnic minorities have taken into account human values recognized across different countries and the relation between these., As clinicians, we often focus on the disease, with the goal being to get rid of as many cancer cells as we humanly can and prolong our patient's life expectancy while maintaining quality of life. I often feel we require tangible goals which can be measured in time and percentages, hazard ratios, and survival odds at 2 or 3 years. For the patient sitting on the opposite side of the desk, who are only single points on a Kaplan-Meier curve, goals may be very different, shaped by their own cultural values and beliefs. What numerical value can we place on traveling overseas back home, enjoying conversations over family dinners, rather than going to the cancer center for the next cycle of treatment? My patient had decided his goal was to return home to his family in Vietnam. I saw him in clinic several times, each time gaining more of an understanding of his decision. I spoke to his partner, we obtained a face-to-face interpreter. We discussed culturally appropriate support groups. He was active in local community groups who provided spiritual and existential support. I enquired about herbal remedies, which he had been on preceding his cancer diagnosis and continued with our pharmacist's approval. We turned to discussing where he was going to be living in Vietnam, potential complications during the flight home, provision of a medical letter, and copies of his tests. He remained uncertain about the prospect of further treatment, that it was hard to access good medical care and did not offer any answers about whether he planned to seek out treatment in the big city hospitals back home. He reassured me he would be fine. Every time I see a CALD patient, I remember my patient who politely said no, thank you. I wondered if he ever accessed any treatment, how quickly his disease progressed, when and how he died. My initial frustration has evolved into the understanding of how important it was for him to be surrounded by family. I found solace knowing he died with family by his side. The treatment he wanted could not be offered through an intravenous drip or medication. It could only be found in the safe familiarity of family. Every time I see a CALD patient, I try to create a culturally familiar place for them to be treated and place their decision making amid their cultural beliefs, norms, and values. The theme of last year's World Cancer Day is “Close The Care Gap.” Language, literacy, ethnicity, race, income, education, socioeconomic status, and geographical location are just a few of the factors that contribute to the cancer care gap. We need to have cultural sensitivity in mainstream health care and respect the differences that feed into the decision to accept or decline treatment in ethnic minority groups. Ethnic minorities are defined as nondominant groups, connected by a shared cultural heritage, values, and often language. It is important to note that this is also a relative definition, and my patient in Australia falls into the CALD group, but would be the dominant group back in his home country of Vietnam. Health and illness are not only visceral but also a social and cultural phenomenon. Sometimes, it is recognizing that closing the care gap does not bring us to the same destination, but to walk the road less traveled with them. As the years pass and I reflect on my patient's cancer journey, I have come to understand that as his doctor, it was my job to ensure he understood his disease and treatment options. However, perhaps even more importantly as his doctor, it was my honor to support him down the path he had chosen. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. With me today is Dr. Stephanie Lim, a Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. In this episode, we will be discussing her Art of Global Oncology article, At the time of this recording, our guest has no disclosures. Steph, welcome to our podcast, and thank you for joining us. Dr. Stephanie Lim: Thank you very much for having me. Dr. Lidia Schapira: Let's start by talking a little bit about the role of writing and reflection for us in oncology practice. Tell us a little bit about what led you to write this case up and then to decide to share it with your colleagues. Dr. Stephanie Lim: Yeah, so writing is definitely a creative outlet for me. I also love to paint, and I think there's so much art in the oncology space. There's so much storytelling, the rich and diverse stories that our patients live out in their cancer journey. So I think for me, writing definitely is an avenue for me to process the patient scenarios, to distill what I've experienced emotionally with the patient in front of me, and really to put it down on paper. It's almost a debriefing exercise as well for me sometimes. It's quite cathartic to write and to paint, and I find it's also a way to remember a patient. So if there's something I really don't want to forget, I think writing is a way to almost memorialize that patient's scenario and that patient experience. Dr. Lidia Schapira: Very beautifully said. So with that, let's go to the case in the particular patient that you chose to write about. And in my reading of your essay, I think you have a message. What is that message for the reader? Dr. Stephanie Lim: So I think let's take a step back and just go through some of the themes that really resonated with me, that took me quite a few years to go through and think through before I actually wrote it down in this essay. In fact, this essay is an amalgamation of quite a few cultural and linguistically diverse, or CALD patients that I've met and looked after over the years, and those themes just kept recurring. The first is patients when they said no to treatment. As a clinician, I struggle. I struggle with that when patients flatly refuse what I sincerely feel is the best treatment option for them. I feel frustration, disappointment, even anger and sadness, almost grieving that lost opportunity for potential life lengthening years that the patients may otherwise have. In fact, I was listening to one of your other podcasts the other day, “Knuckleheads”, which, again, resonated with me because it was, again about another story of patient refusal and a different story, but the same theme. And I think when you add the CALD population into it, which is really the theme, the message of this essay, you add another layer of complexity, another layer of cultural diversity and differences to an already complex decision making process. So those two things really sort of challenged me over the years. And I think the other pervasive theme is that human side. We always talk about the art of oncology, the humanistic aspect, but it's true. So I think the importance of the patient's story and really just paying attention to the background and that lived experience. Someone once told me, medicine, it's a humanistic enterprise, it's not just about numbers and medians. In fact, in the essay I mentioned that the patient in front of me is really just one point on a Kaplan–Meier curve. Medians to them don't really mean very much. There's really no value that we can place on time spent with family. Or in this case, when I tell a patient they've got progression, or try and outline and map out the next treatment plan, and then they turn around and ask me, “Okay, doc. So can I hop on a plane, fly across to the other side of the world and spend three months with my family? Because that's what I want to do.” So I think there's that struggle of trying to really do what's best for the patient in terms of medians and survival and quality of life, but also trying to balance those things that are really hard to put a value on. I hope the message of this essay is that we can try and understand, identify these things, pay attention to patients, listen to their stories, and really help appreciate those choices. So it's certainly by listening to them and really trying to understand more about CALD and the concepts and values behind their decision making. I've grown to appreciate the choices they make and really helped to support them down what I called the path less traveled, a very unfamiliar path that I otherwise wouldn't have chosen for them. Dr. Lidia Schapira: So let's unpack all of these wisdoms that you've just told us about. The motivation is clear, the intentions are clear. Let's talk a little bit about your discomfort as an oncologist, because I'm sure our readers and our listeners have experienced that when a patient gives you an informed decision to refuse treatment, why do you think it makes us so uncomfortable? And why did it make you so uncomfortable to have your patient say, “Thank you very much, I understand you, but no thanks”? Dr. Stephanie Lim: Yeah, I think as clinicians we want the best for our patients. And I think a lot of the time that is what's best in terms of survival, what the evidence says we should be doing, weighing up the pros and cons of treatment. And we map out the lines of treatment for our patients while trying to maintain a quality of life and take into account all their wishes, of course. But I think sometimes we might get carried away with what we want for them or what we feel is best for them. But listening, if you really spend time asking what they really want, it might be something as simple as I just want to spend more time with my family rather than coming to the chemo suite for another infusion. I think as time goes on I'm doing a lot more listening, a lot less talking. When I started out I was telling patients medians and this is what we're going to expect, this is the 50% survival rates, and a lot of time patients look at me and it means not very much to them. So I think for us there is a root that in our minds we've mapped out for them which we sincerely feel is the best for them. And I think when they refuse that it can be quite frustrating, but also I think, challenging because as I said, it's a path that's unfamiliar. When patients go from diagnosis to, “Well, I actually don't want any treatment,” really they shorten their- as I think I put in the essay, intentionally shortening their survival and choosing best supportive care when they're not there yet is something that I still struggle with, especially in my younger patients. Dr. Lidia Schapira: So let's talk a little bit about that. And I'm just challenging you in the best possible collegial way here when we talk about honoring our patients autonomy and providing sufficient information for them to really give us informed consent based on being aware of their choices and trade offs. And yet when those decisions don't conform to what we think we would choose or what we've recommended, there's disquiet. And yes, we know that the patient ultimately is the main decider on what gives their life value and meaning, but it's difficult for us. Can you talk a little bit about how you resolve this tension in your practice? Even if a patient is very fluent in your primary language, that's almost a detail. It complicates things here. But it's not the only thing that really, I think, is so challenging and feels so difficult sometimes for the oncologist. Dr. Stephanie Lim: Yes, I think in the CALD population, there's several other layers of complexity. So yes, the patient is... /episode/index/show/aoopodcast/id/31630832

Knuckleheads: Understanding Patients Who Reject Treatment 03/26/2024

Knuckleheads: Understanding Patients Who Reject Treatment Listen to ASCO’s Journal of Clinical Oncology essay, “Knuckleheads” by Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. The essay is followed by an interview with Gilligan and host Dr. Lidia Schapira. Gilligan emphasizes the importance of partnering with his patients to understand what they are going through and their reason for rejecting recommended treatment. TRANSCRIPT Narrator: Knuckleheads by Tmothy D. Gilligan, MD, FASCO () I was in tumor board when I first heard about him. One of my former colleagues referred to patients like this as knuckleheads, patients who were interfering with our plan to treat their cancer. He needed chemotherapy. He kept refusing. He was going to be referred to me so that I could talk some sense into him. Preparing to go into the examination room, I realized I was getting ready to use my medical knowledge to try to make him consent to chemotherapy. After all, that is what he needed. If only he would listen to me. I paused and remembered what my mentors had taught me about forming effective relationships with patients and about the communication skills that could engender trust and a feeling of connection. I remembered one of them saying to me “Every time I open my mouth, I risk making things worse.” So I committed to listening and curiosity and humility and entered the room. He had a curable cancer. There was so much at stake. “What have the other doctors been telling you about what’s going on?” I asked. He said he had been told that his cancer had come back and that he needed chemotherapy now. That additional surgery wasn’t an option. “I heard that you had some concerns about chemotherapy,” I said. “Yes, I want to delay it until the fall,” he said. “Tell me about that,” I responded. So I got to hear his story. He was a single father with several school-aged children. His wife had recently left him for another man and said a lot of hurtful things on the way out the door. She no longer wanted to be a mother and only saw the kids 1 or 2 days a month. His oldest child was in crisis and struggling in school. The patient was a construction worker who could only work during the warmer months and would be unemployed all winter. As a seasonal worker, he was not eligible for unemployment benefits. He was the sole breadwinner for his family. It was now summer. If he stopped working for 3 months to receive chemotherapy, he would not be able to support his family and had no way to make it up during the winter. Not really the story of a knucklehead, of another man refusing to take care of himself. It all seemed so unfair to me that I wanted to cry, to have all this land on him at once—cancer, abandonment, a child in crisis, financial instability. He was overwhelmed. I let him know that I saw that, that I was moved by it. We talked about his cancer and what we would expect to happen if it was treated and what would happen if it was not. He wondered if maybe we could wait 2 weeks and get another scan to see how quickly things were progressing. Medically this seemed safe, and I agreed to his plan. And with the help of the social worker on our team, we started marshalling resources that day to make it more feasible to get him through treatment, which he agreed to begin a few weeks later. He completed the course of chemotherapy, and he has most likely been cured. He reminded me of another patient I had, an African American woman who had been referred to me by one of my only African American colleagues in my work setting. She had bladder cancer. When reviewing her chart, I noticed that she had been diagnosed 2 years earlier at a different hospital and refused treatment. The chart said that she needed to take care of her children and declined curative surgery for that reason. It seemed like an odd logic to me. Another knucklehead refusing to comply with our plan? When I went into the room, she clearly did not trust me. I saw skepticism in every aspect of her behavior and wondered whether it was my whiteness that triggered it. I remembered my mentor's words about the risk of opening my mouth when I was not yet sure to whom I was speaking. So I listened, paying attention and waiting for an opening. Eventually she said, “You know, I was actually diagnosed 2 years ago.” “Yes, I saw that in your chart. I was wondering what happened.” “Well, I was all set for surgery. And when they were evaluating me for it, this anesthesiologist came into the room. And she stood there looking at me like I was a piece of dirt. And she wouldn’t answer my questions. And I said to myself, I’m not letting her take care of me.” “Was that racism?” I asked her. “Yes, it was,” she said. “It sounds like racism,” I said. “I know it when I see it,” she said. After that, there was a striking shift away from the skepticism I had felt from her earlier in the visit. We talked through her treatment options. We set her up to see a radiation oncologist and a urologist who did radical cystectomies. When I called her at home after those visits to see how they went, I heard that the radiation oncologist had won her trust. The urologist had not. “It felt like he couldn't wait to wheel me off to the operating room,” she told me. So she choose bladder preservation with chemotherapy and radiation. It turned out that she was a foster mother and was deeply devoted to her foster children. She wanted to be there for them. They were not a reason to decline life-saving medical care. And we talked about them at every visit as she made her way through treatment. She, too, seems to have been cured, despite the delay. What surprised me about these two patients is that no one seems to have heard their stories during their initial encounters with the health care system. The only story that was heard was the story of the tumor, the focus of our tumor boards. And yet it only became possible to treat them when we learned their human story. I wonder whether tumor board is the best name for the conferences that bear that moniker. Does the name predispose us to focus on the disease rather than the person? And while I did get to hear the stories of these two patients, it made me wonder how often I have failed to do so with others on days when I was not being so careful. What was it that led them to choose treatment? Human decision making is complex and influenced by many factors. I tried to see these two patients and to hear them and to make a connection. I cannot know for sure what made the difference. This is what I do know: I am not entitled to my patients' trust. It is something I have to earn each time I walk into the room. One way to earn it is to listen and to be responsive to what I hear. I try to remember where the locus of control lies. It is their life, it is their illness, and it is their decision. I can advise them and help them understand their options. Together, we can explore what is most important to them. But I do not get to tell them what to do. If they decline to follow sound medical advice, maybe there is something important that I do not know. If I stop talking, maybe they will tell me. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Timothy Gilligan, who is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. In this episode, we'll be discussing his Art of Oncology article, "Knuckleheads." At the time of this recording, our guest has no disclosures. Tim, welcome to our podcast, and thank you for joining us. Dr. Timothy Gilligan: Thank you so much for having me. I'm really happy to be here. Dr. Lidia Schapira: It's my pleasure. Let's start by talking a little bit about the purpose of writing and publishing this article that, to me as a reader, has a direct message for our colleagues in oncology. Tell us a little bit about the motivation and the intention. Dr. Timothy Gilligan: So I think there are two pieces to it. One actually was feedback that I heard from medical students, and we would talk to them about their experiences in the hospital with regard to bias and related issues. One of my hats that I wear is I'm a DEI officer for graduate medical education, so I'm involved in that work. We heard two major complaints from students, and one of them was that they heard doctors, whether they were attendings or residents or interns, speaking about patients disrespectfully. And the big kind of ‘aha moment’ for me was realizing that we kind of get indoctrinated into this world where we sometimes let off steam by speaking about our patients in disrespectful ways. And I remembered when I was a junior attending, a senior attending, handing off a patient to me, saying, "Good luck with her. She's crazy." And I was so used to that language that I didn't pay that much attention to it, but I actually ended up forming a very good relationship with that patient. But after I heard that feedback from the medical students about how it really upset them that we're taking care of these people, and sometimes outside the room, we use language that isn't really respectful. It's not that it was mean, necessarily, but it was less respectful than you'd like it to be if it was someone like your mom or your loved one, your brother, or whatever. And so I started really listening to that, and I tried to pay attention. Did I do that? And could I stop doing it if I did? So that was one piece of this. But the other thing that really motivated me is that the first story that I tell in this article really was my favorite patient of 2023, because I actually felt like, by taking an extra effort to really get to know the person, I was actually able to really get a better outcome for the patient. And when we got him through treatment and he was cured, it felt like such a win. Dr. Lidia Schapira: Let's pause for a moment and just talk a little bit about the student's comment, because when I just saw the title of the article, I felt a little stung, like, how can we even be using this word to refer to a patient? Tell us a little bit about that. You are the most attentive, respectful clinician that I know, and you publish an article with a word that a colleague described the patient, and to me, it just doesn't pass the bar. Dr. Timothy Gilligan: Yeah, well, it's funny, because, actually, the person I heard use this language is one of my favorite doctors and is really an amazing doctor. And so good people can use language like that, and I think we need to stop. But I almost used it affectionately because I learned a lot from this doctor. And as the doctor actually had very, very high clinical standards, and I admired that about them. But I'm an expert in testicular cancer. And sort of the word on the street among doctors who test testicular cancers is that the challenge is you have these men in their 20s who don't take their health care seriously and they won't follow your advice. And so they get referred to as "knuckleheads," which is not a word we should be using. But that's where I came from. I didn't make that up. It's a word I had heard in my practice. Dr. Lidia Schapira: Let's talk a little bit about why you were called in to see this patient. He refused therapy and you were called in to go and have the conversation that will make him accept therapy because refusal of therapy seems unreasonable. Help us understand a little bit about how somebody should think about a patient who refuses therapy. Broadly, it seems your advice is to go in and get the story, and the story will explain things many times, but tell us a little bit more about that. Dr. Timothy Gilligan: Yeah. The patient was sent to me because I'm the local expert in testicular cancer. And the thought was that the oncologist could get the patient to go along with the treatment that was recommended. And I realized shortly before I went into the room, I was all geared up to marshal all the evidence and all the facts and to explain to him why he needed treatment no matter what. And I remember when I was in training a surgeon, once I was in the room with them, I was talking to a patient and the patient was talking about how complicated it was to get through the treatment. And the surgeon said to the patient, "Well, you know, right now the only thing that matters is your cancer." And I remember thinking, well, that actually may not be true because people have lives. They have to pay their bills, they have a job, they have a family, they have kids they're worried about. For us, it's easy to say ‘your cancer is the only thing you need to worry about,’ but often it's not. And so I think what helped me with the patient was to sort of pause before I went into the room and think, what's the story here? What don't I know yet that I need to know? And how can I find it out? Dr. Lidia Schapira: And you tell the reader that you relied on advice you'd received from an attending years before, that also warned you that if you say too much, you could be making things worse. If you open your mouth, you could potentially contribute to whatever the tension was that had created this impasse to begin with. So you slowly sort of let the patient tell you the story and you're drawn in. Tell us a little bit about what it feels like to be drawn into this patient's story, somebody who had already been labeled as being perhaps difficult or refusing a life-saving therapy. Dr. Timothy Gilligan: Well, honestly, I ended up being really surprised. And I think the issue you're talking about that what it reminds me of is when I was early in my career, I found it very confusing that I would have patients who really loved me and was glad I was their doctor, but then there'd be some patients who it felt like they didn't really love me and they wish they had someone else as a doctor. And I tried to figure out, like, I'm doing the same thing. Why am I getting such different reactions? Then, of course, the obvious explanation is I'm seeing all these different people who want different things. And I think going into the room with this sense of, before I say anything, I need to figure out who I'm talking to, because a given approach will work with one person but not with another. And if I can figure out who's who and tailor my approach to the individual, I can have much more success. And so it got me in the habit of trying to really start with listening and listening and watching. When I work with fellows, what I try to get them to do is just really observe carefully. So rather than put their energy into talking, put their energy into watching and listening and figuring out: “Who is this person? What kind of day are they having? What do they need from me? How can I be helpful to them? How can I speak to them in a way that they'll feel like I'm on their side and they can trust me and I respect them?” and all of that. And so the shorthand for me is to go into the room with curiosity and find out, who is this person? And I figured that out not by talking, but by listening to them. That's how I got him to tell me his stories. I just asked him, like, "I hear you don't want chemotherapy. Tell me what's going on." Then I heard this whole story. Dr. Lidia Schapira: And his story is heartbreaking. Dr. Timothy Gilligan: It is. Dr. Lidia Schapira: He's been abandoned by his wife. He's got to support the kids. He's got to work in the summer. And it's not that he doesn't want to live. He just doesn't see a choice here. And you say in the article briefly that you were moved by the story, and tell us a little bit more about what happens to you when you're moved by a story. Dr. Timothy Gilligan: I became a little bit emotional. I don't think I really cried, but I paused for a moment to kind of catch myself. I think particularly I brought a social worker into the room to help with what was going on and the nurse I work with closely. And I told them the story. I actually thought that ended up being effective. It wasn't really something I had planned, but I wanted to get them up to speed and I didn't want to make him tell the story again. And so I told his story to them and I thought what was effective about that was, first of all, it let him know I really heard it and I got it. And it wasn't the story of the medical facts, it was the whole story. But when I told it, I realized what a sad story it was and how unfair. Dr. Lidia Schapira: So, Tim, let's talk a little bit about that. In the course of the work that we do, we are deeply moved and touched by the stories of the people that we treat, the people whose diagnoses we are experts in. But their lives are really their own and they share things that are incredibly intimate with us. So tell us a little bit about how you have, over the course of your career and as self-aware as you are, dealt with the emotional load. Dr. Timothy Gilligan: The other thing I tell fellows is I think it's really important to have hobbies outside of medicine. I think you have to find a way to recharge your batteries. But if you don't care, if you try to protect yourself by not caring, then you're missing out on the meaning of the work. I have a short anecdote I can share that really had a big impact on me. When I was in my first years of attending, I was treating a man with testicular cancer. And we tried and tried and tried to cure him and kept thinking we were going to be able to, but his tumor ended up being really very resistant to treatment and eventually it was not curable. And he was in the ICU. I think he had an infection, this complication from treatment, but it really was game over at that point. It was appropriate, medically appropriate, to withdraw care. We were just going to torment him to keep him on life support longer. And I went to the meeting with his mother and his sister and this attending who had supervised me, who I admired greatly, one of the people who changed me when I was an intern and I was in the ICU, so he's the ICU attending. I'm there as the oncologist, I'm kind of running the family meeting and I tell them I don't think there's anything more we can do medically, and it's time to withdraw life support. And I started to cry, and I felt really embarrassed because here's this attending who I admired so much, and gosh, Tim Gilligan can't even keep it together in a family meeting. And I felt a little embarrassed. But I really cared about this patient. I'd known him for a year and a half, and the family agreed, and withdrew life support and he passed away. And I ran into his sister about six months later, nine months later in the grocery store while shopping, and we talked for a little bit, and she said that what made them feel okay about withdrawing life support was the fact that I cried. Dr. Lidia Schapira: It's a beautiful story, and thank you for sharing that. We often talk about the therapy of connecting with a patient, but connecting means connecting at an emotional level. And it's sort of disingenuous to think that we can do that without feeling and personally being affected by that. When I was training, Tim, before we formally taught communication skills or integrated palliative care and talked about self-care, the advice I got from my attending was that you just go for a run as a way of recuperating. And I remember from a prior interview I did with you that you like to play tennis. Do you go for a run? Do you play tennis? And do you have any other advice for colleagues, especially junior colleagues who are just entering this field and realizing that... /episode/index/show/aoopodcast/id/30548563

The Power of Story: The Importance of Narrative in Oncology 03/19/2024

The Power of Story: The Importance of Narrative in Oncology Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology. TRANSCRIPT Narrator: The Power of Story, Erica C. Kaye, MD, MPH () Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room. Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life. My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.” Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care. As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation. Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling. For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope. As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care. In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another. “I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes. “We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.” Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed published data. The term anecdotal evidence is often wielded pejoratively, with the implication that the anecdote inherently lessens the value of the evidence. Yet after many years in medicine, I now believe that stories are not just useful, they are essential. Listening to and reflecting on patient stories gifts us an otherwise elusive power to minister to suffering, connect meaningfully, influence decision making, and offer healing encounters, in a way that data provision alone cannot do. I personally have seen the power of stories shift mindsets, grow solidarity, change culture, and shape policy. Sharing my own vulnerable stories about grief, infertility, pregnancy loss, sexism, abuses in our medical education system, and other uncomfortable topics has opened doors for difficult dialogue, driven problem-solving, and affected systemic changes, both within my institution and on a national level. I think it is our responsibility, as cancer care professionals, to recognize, practice, and leverage this power with purpose. For me, on an individual level, the repetitive act of listening to stories has fundamentally changed me as a clinician and person. Being on the receiving end of another person's story compels me to slow down, to question my own heuristics and biases, and lean into my own vulnerabilities. The practice of telling my own story deepens my capacity for self-reflection, humility, and mindful presence. Sharing others' stories encourages me to lend compassion, patience, and grace to all of us enmeshed together in this chaotic, messy health care space. Collectively, all of these practices help me reflect on my boundaries, examine ethical situations with empathy, and reframe my role and responsibility as a healer. As a scientist, I also think that the power of stories extends beyond the bedside. The most rigorous and impactful research studies are often those inspired by the stories of patients and families. Early in my career, I sat down with a group of bereaved parents to hear their thoughts about my research concept. Their vivid stories about communication between the medical team and their family directly shaped my research question and study design for the better. More than a decade later, listening to stories from patients, caregivers, and colleagues continues to help my scientific team develop holistic aims, hypotheses, and methods; implement study procedures that respect the person over the disease; and analyze and synthesize findings that honor and elevate community voices. Storytelling also strengthens my scientific writing, reminding me to not get lost in the weeds and simply tell a narrative that cuts to the heart of what matters to our community. Yet the art of storytelling carries relatively little prestige or social currency in the field of oncology, particularly when compared with evidence-based practice. Oncology training rightly emphasizes the development of rigorous skills in collection, analysis, and interpretation of data; fewer aspects of our training incentivize us to value the art of storytelling. I worry that this is a mistake. In my opinion, we spend substantial time teaching our trainees what to say and not enough time teaching them how to bear witness and listen. We have drifted too far from the core philosophy of Hippocrates, who believed that careful listening to patients' stories held the key to revealing diagnostic and therapeutic truths.1 Rooted in Hippocratic principles, the first clinical skill that medical students practice is how to elicit a patient history, listen actively, and reflect on a patient's unique story to develop a problem list, assessment, and plan. At the core of each patient encounter is the fundamental concept of narrative competence, comprising a clinician's skills with respect to bearing witness to, acknowledging, interpreting, and sharing stories.2 About two decades ago, the field of narrative medicine, or medicine practiced with narrative competence, was popularized and championed as an approach for teaching and sustaining holistic, person-centered health care.3 Today, a growing literature shows us that training and practice in narrative competence has the potential to improve communication, collaboration, empathy, mindfulness, and professionalism in medicine. In the field of oncology, multiple studies have investigated the feasibility, acceptability, and impact of interventions such as reflective reading and writing, oral and visual storytelling through art and music, and experiential learning sessions on narrative competence for cancer care professionals. While mostly single-site studies, the findings suggest that narrative-based interventions can foster mindfulness, emotional connection, and solidarity; improve self-awareness and self-compassion; encourage personal satisfaction, sense of accomplishment, and overall well-being; improve ethical decision making; strengthen collaboration and teamwork; bolster resilience; and mitigate burnout and secondary traumatic stress for cancer care professionals.4-10 Yet clinicians often face barriers to the integration of narrative-based approaches in education and clinical practice. Lack of time, resources, and support are commonly cited as roadblocks to incorporating storytelling in day-to-day activities. Templated notes may hinder the dual, interrelated processes of listening to and documenting patients' stories, reducing lived experiences to a litany of check boxes. Despite these challenges, simple exercises can increase narrative competence with minimal time or effort. Even a short, one-time session of reflective writing can help health care professionals explore and learn from difficult clinical experiences with seriously ill patients.11 For those who don't enjoy writing, the brief act of reviewing patient narratives can be impactful: for example, oncologists who spent a few minutes reading digital stories written by patients with cancer reported positive changes in their patient-clinician relationship, a heightened sense of empathy and intimacy, a greater appreciation of the patient as an individual, and rehumanization of health care work.4 For narrative-based approaches to grow and thrive in our field, though, we need clearer definitions of what constitutes narrative practice in oncology. I suggest that narrative oncology should encompass the purposeful practice of eliciting, listening to, reflecting on, creating, or sharing stories about the cancer experience, told through diverse mediums, with intentional integration of these acts in clinical practice, research, and educational arenas. Narrative-based approaches or interventions in oncology should comprise a spectrum of deliberate activities including reflective reading, interpretation, discourse, and writing practices designed to emphasize and promote self-awareness, compassion, and humanism in cancer care. I encourage us, as a field, to respect narrative oncology as a unique corpus of knowledge, comprising content experts to inform its relevant applications to education, research, and clinical practice and governed by its own criteria to assess competency and impact. We can appreciate that the aims and skills underpinning expert narrative oncology practice may overlap with other areas of expertise, such as communication skills training, while recognizing the distinct competencies required to engage in, role model, facilitate, teach, and study narrative practice in oncology. Each time that I listen carefully to a patient's story, or share my own story with others, I feel myself grow as a clinician and as a person. It can be tricky to measure or prove this growth, and some people may argue that quantification belies the spirit of narrative practice. Personally, I believe that, for the field of narrative oncology to grow in legitimacy and impact, we need to develop some consensus standards and collaborative approaches to demonstrate value to naysayers. I am hopeful that oncology, as an evidence-based field, can rise to this challenge. At the same time, we should anticipate a priori that we won't be able to capture every intangible impact, and lack of data must not discourage us from advocating for the importance of stories in cancer care. Certainly, changing the culture around storytelling in oncology will not be effortless. I believe that a multipronged strategic approach is needed to grow credibility for the field of narrative oncology, and I encourage colleagues to consider supporting the stepping stones outlined in . I hope that we are reaching an era in modern medicine when the power of listening to and telling stories need not be controversial; it is time for the field of oncology to be proactive and purposeful about legitimizing, teaching, and practicing storytelling across clinical, education, and research settings to benefit patients, caregivers, clinicians, researchers, and communities. When I think back on that difficult DNR conversation years ago, I remember none of the data informing our high-stakes medical decision making. I don't recall the odds of further disease progression or third-line treatment efficacy. I do remember, though, each story that the mother shared, as I knelt at her feet, listening quietly. She told me stories about hope and faith. About fear and despair. About family and resilience. In the end, I got the DNR, but I left the room with so much more. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University. Today, we are joined by Dr. Erica Kaye, the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. In this episode, we will be discussing her Art of Oncology article, "The Power of Story.” At the time of this recording, our guest has no disclosures. Erica, welcome to our podcast and thank you for joining us. Dr. Erica Kaye: Thank you so much for having me. I am so glad to be here with you today. Dr. Lidia Schapira: It is such a pleasure. Before we dive into the content of this beautiful essay, and a call to action in a way, tell us a little bit about your relationship to writing as a physician both in training and now in practice and also as a researcher and educator. What role does writing have for you as a person? Dr. Erica Kaye: That is such an important question, one that I am not sure I have ever been formally asked before so thank you. Thank you. So transparently I studied English as an undergraduate and focused specifically in poetry for my Bachelor of Arts degree. And so I spent a lot of time during a formative period in my life thinking carefully about language and writing, about the construction and also the analysis of words and how carefully we choose them to communicate and share a message. And then when I entered into medical school, I spent a lot of time thinking about the power of language, about the ways in which the words we choose convey a profound meaning and enable us to connect with others in incredibly powerful ways. And I was fortunate, through some luck, to encounter the field of palliative care, which is anchored in the power of language and communication. And so for me, it was a natural marriage of the things that I felt so passionate about, learning communication and conveying stories through words and through body language in order to connect meaningfully with patients and families in a very sacred space at the, arguably the most difficult and stressful times in their life. And so as I now train other students and many come through our clinical and research programs, from undergraduates to graduate and medical students and residents and subspecialty fellows, we really emphasize the importance of storytelling in the work that we do in medicine and in research, and I would argue as people of the world, and try to help students understand that the ways that we construct narratives about our patients, about one another as colleagues, about the world in which we work and live in, the ways that we construct and reflect on those stories, so powerfully influence how we feel in our practice and how we collaborate with one another in the work that we do. And for some of us, we can connect really deeply with that message through writing. And through others, we can act through oral storytelling, or through mindful listening and reflection. So there are lots of different ways to engage in the creation and sharing of those stories. Dr. Lidia Schapira: So, Erica, let me just go a little bit deeper into this and into the personal meaning for you. You talk about poetry, and the one lovely thing about poetry is that you have to use very few words to get out the essence and meaning of your message. So for you, does writing or reflecting through storytelling bring you joy, lighten some of the emotional burden perhaps that we carry because of the work we do? Tell us a little bit more about it from a very personal perspective. Dr. Erica Kaye: That's a fascinating question. I am not the kind of person who would say that the practice of writing itself brings me joy, although sometimes it does. But I think, for me, the joy comes in the practice itself, from the knowledge that something I write will connect with another person. And so I think a lot in my practice, as I'm choosing carefully the words that I want to place on a page for others to read or hear, I think about how that might resonate or create meaning making for somebody else. Dr. Lidia Schapira: So you talk about intentionality as well, right? That seems to be what I'm hearing you say, intentionality and putting effort into actually thinking through this instead of it being perhaps an automatic process. That's incredible. And I would say that the other thing that I'm hearing you say, maybe you didn't frame it exactly like this, is that in the act of choosing your words, in delivering and crafting a message, you're also showing some wisdom or appreciating the wisdom that can come from the proper telling of such stories. Is that- does that get at it, or am I making this up? Dr. Erica Kaye: I think that’s true. And I also think that I find something sacred about the idea of being able to connect in a meaningful place with somebody who I may not know. And sometimes there's conscious, purposeful direction towards that moment. And sometimes I think it may be unconscious trying to create a message or a feeling for the idea or the hope that someone may receive it on the other end. Dr. Lidia Schapira: That’s a beautiful thought. Turning back to the title you chose for the essay is about power, so let’s talk a little bit about power. As I see that is one of the central messages that it’s not just about releasing our own emotions onto a page, but it’s also about leveraging some of the power that we have to implement change or to help others. You talk a lot about the elusive power but you also talk about very concrete benefits of storytelling. Can you tell us a little more about how we should think about that? Dr. Erica Kaye: I love the word ‘power’, and not because of the way in which it’s traditionally used in a unidirectional approach wielded by someone against or on another, but because of the root. So I think of empowerment and how important it is for people to feel like they own and can share their power. And so I think the reason I chose that title was a purposeful and directive reminder to the reader that we all share in this collective power, so that title becomes then in and of itself a form of empowerment. Dr. Lidia Schapira: That’s a very important and... /episode/index/show/aoopodcast/id/30442198

Etch a Sketch: A Young Patient’s Art Provides Imaginative Scaffolding 02/27/2024

Etch a Sketch: A Young Patient’s Art Provides Imaginative Scaffolding Listen to ASCO’s Journal of Clinical Oncology poem, “” by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. The poem is followed by an interview with Tong and host Dr. Lidia Schapira. Tong shares her thought process behind her fictional poem, where a mother and daughter receive bad news of a leukemia diagnoses. TRANSCRIPT Narrator: , by Wendy Tong, MD You are only seventeen when you first learn its meaning.Just moments before, you sit in a white-walled roomwith your mother by your side. You have been losing weight.You have been feeling dizzy; you have been bedbound with colds.You have been waking up with the taste of blood,finding dried crimson on your pillowand tiny red freckles smattering your skin. In the middle of the waiting your mind drifts backto when you were younger, when the thing you liked bestto play with was an etch a sketch. You would maneuver the knobsto draw lineographic pictures with an invisible stylus—a whole world of possibility pixelated into a gray two-dimensional screen.If you made a mistake, no matter. The image would blurwith a few simple shakes; if no one saw it, did it ever really exist? When the doctor returns, you try to brace yourself but findyour defenses dissolving as he delivers the message. This is the moment you learn the meaning of tragedy. It is a fortune-telling, it is a sentence.Your mother’s face pales. You simply stare at the hands in your lap—hands that have just learned to love. Hands that have fumbled to make art; hands that could not help but hold onto hope. A whole world of possibility suddenly goes dark. If only this screen could be shaken, this gritty image erased. As you watch your mother’s tears fall, you retreat to a safer placeinward, where you are free to sketch the image of the two of youat the kitchen table just that morning, before things changed. In a single movement you pencil in the harsh slantof your own angled cheekbone. In another, you etch worry linesinto your mother’s forehead for age to deepen.This is not the future that she dreamed for you. But there are things you cannot capture with two-dimensional strokes.What of the way the sun had hit the glass saltshaker, or the slowing of light. The way refraction had scattered rainbow flecks across your mother’s cheeks like celestial confetti, the grace of an unseen angel.The way the coffee was still warm against your lips. These are the things, you realize now, that will sustain you. You reach for her hand and she grasps back, tightly. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Wendy Tong, an Internal Medicine Resident at McGaw Medical Center of Northwestern University. In this episode, we will be discussing her Art of Oncology poem "Etch-A-Sketch." At the time of this recording, our guest has no disclosures. Wendy, welcome to our podcast, and thank you for joining us. Dr. Wendy Tong: Thanks so much for having me today. Dr. Lidia Schapira: So let's start by talking a little bit about your writing, you are going through your medical training, tell us what writing does for you. Dr. Wendy Tong: I first started getting into writing poetry, or writing in general, about halfway through medical school. I was always inspired to write after a specific patient encounter, sort of as a way to capture something human that I had noticed about them - a specific detail, mannerism, or attitude - something that I wanted to appreciate and remember. When I started, poetry was a good way to capture those little glimpses separate from writing more narrative essays where you are able to get in more of the medical details, history, and the whole complex course. So, I've found solace in being able to reflect on experiences through both mediums. But I do find that it's a good way for me to process how patient encounters went or what a specific patient meant to me, and it's a way for me to remember them as well. Dr. Lidia Schapira: Let's talk a little bit more about poetry and how it allows you to get these glimpses or perhaps capture an emotion or a scene. Tell us a little bit more about that choice to tell a story, in this particular case, a moving scene, through poetry. Dr. Wendy Tong: I can still remember the very first poem I attempted to write. It was in medical school, I was actually rotating on a palliative care elective. And this very sick cancer patient, she was a very thin and cachectic, but the first thing I noticed when we walked into her room was she had these amazing nails - glittery, long, and gold and they’re beautiful. So that’s something I noticed and I commented on, and she said it’s what makes her feel human still and what still keeps her going, even though she was so sick. That detail stuck out in my mind, and after I left the room, I ended up typing up a little blurb about this detail I noticed on my phone. And that ended up becoming my first official poem I’d written about a patient, first poem in general, actually. When I'm able to be in the moment or in the present and notice and observe things, I think that's where the inspiration strikes so to speak. It's something human, it’s some kind of connection that I like to reflect on and remember. So, I think that's what makes poetry so powerful and helpful in those ways. Sometimes I don't have a full story to tell, or I just want to capture one moment and how it made me feel. So I think poetry is really powerful in that way. Dr. Lidia Schapira: You're making a very good case for narrative and medicine and that is all about observation and, sort of as you say, capturing it in whatever art form you use. So my question now is a little bit about that creative energy that seems to be flowing from you, that maybe starts in a moment of connection or in a moment when something just captures your imagination, and then you express it. Tell us a little bit about how you've incorporated that into your life as a physician, maybe starting as a medical student. I'm going to the "Why do this?" What does it do for you? Dr. Wendy Tong: That's a great question. I'm an only child and grew up loving reading and being very into books. As a child, sometimes my parents would come in and be like, "Why is your light still on?" So I would block out the light from under my room because I'd be up all night reading. When I was young, I wanted to be a writer. At that time, it was just novels or whatnot, but I never really pursued it. So I would take a creative writing class here and there in college, but never found the subject material that made things click for me so to speak. And I remember in my gap year before applying to medical school, learning about the field of narrative medicine, which is still ever growing, and reading Atul Gawande's books, obviously, non fiction, but it opened up a whole new world for me, combining these two passions - writing and medicine. So I don’t think the inspiration struck until having actual patient encounters. The first half of medical school was a lot of textbook learning and classroom. And it’s not exactly inspiring. It wasn't until my actual medicine rotation that having the human component and specific encounters were very inspiring so to speak. I think it’s one patient for me who made me decide to go into internal medicine, and also later I realized is inspiring me to want to become a palliative care physician actually. And the first patient I started writing about is also the same patient who, in my third year of medical school and on a general medicine rotation, the first patient I’d grown very close to and who passed while I was helping take care of him. We are able, as medical students, to spend a lot more time with patients. So I remember in the early mornings when it was still dark out, I’ll go into his room while I was pre-rounding and chat with him. He would tell me about how tired he was. He was quite sick. He had neo pulmonary hypertension and high output heart failure, and all these things, he had a chest tube in. And each morning, he would get worse and worse. He would tell me how bothersome the beeping was and how much he hated needle sticks. It was like a harbinger of what was to come because it seemed like he knew what was going to happen. One morning, he asked me about physician-assisted suicide he asked things like, “Why me?” It was a very emotional time, and I still think about it today. That day, our team had gotten palliative involved. He had wanted his code status changed to DNR, and within 24 hours, he had passed away. I remember when I found out, I burst into tears in the resident room, and I just kept thinking about this patient. And looking back, I think it was in those moments of connecting with him and his wife and family that– I'm not a religious person, but it almost feels like a spiritual or sacred feeling in the room sometimes when you’re talking about life or death. Sometimes you just get this feeling, and I think that's the feeling that both makes me want to write and pursue palliative care. Dr. Lidia Schapira: I think that's a very beautiful, sincere, and very authentic pitch for why it's really important to allow that space - the space of absorbing what just happened, sort of celebrate the connection, in your case, maybe even memorialize a patient. I wonder if you find that the medical culture and your attendings are supportive of this, or it’s something you sort of push to the side and keep private. Dr. Wendy Tong: Going back to that day when I burst into tears at that moment, some residents in the room, or my residents were very supportive of me and told me to take care of myself and go home for the rest of the afternoon. Another resident, I think I overheard saying, like, “I just wonder what had happened.” Totally normal reactions. The next morning, what I really appreciated was my senior resident and our attending had let us have a moment of silence before we started rounds. So we all stayed in the room. We reflected a little bit about what the patient meant to us and how his clinical course had gone. We were able to share a moment of silence, which I found really impactful, and I was really appreciative of. That's something I've also noticed on my medicine rotations here or when we are in the ICU and having a lot of stuff happen, my team, and now I am a senior resident, but as an intern, my senior residents would be quite supportive. I just think those moments of silence are so simple to do and very quick to do, but they're really impactful and show that people are aware of how hard this job can be sometimes and that patients who we lose do deserve that moment of respect. Whenever that happens, I'm very grateful for it. It's something I hope I will do myself as a senior resident and in the future, to encourage everyone that it's okay to experience those emotions, and it's okay to pause and reflect. We don't always have to keep moving forward without pausing. Dr. Lidia Schapira: Wendy, I'm very impressed hearing you talk about how you process the emotional intensity of some of these connections. I wonder if you've shared your poetry or your writing with patients. Dr. Wendy Tong: That's not something I've done before yet. Many of the poems I have written are about very sick patients. Oftentimes, it's patients I happen to meet while I am rotating on a palliative care elective. I think it says something. One, it's just being able to have the time and the space to notice and sit with people and have those moments of connection. And then to write them down and process it. Dr. Lidia Schapira: What I'm hearing you say is that you're drawn to palliative medicine. I wonder if that's because in that specialty, we value being with patients and accompanying them. How does that sound to you? Dr. Wendy Tong: That sounds totally right to me. I think so much of what brings a lot of us into medicine is we say we want to help people. We enjoy speaking with patients and making those connections. I will say, I have noticed that when I'm very busy, very burnt out, and tired, I don't have that spark in me or the motivation or inspiration per se to want to write or to create. So I think it says something that to be at our best and to be emotionally well and able to create, it's best if we are in a good mental space. But for me, when I think back about what drew me to medicine, it's those moments. And I do think palliative care as a specialty is one that intentionally fosters those moments and gives us a little bit more time to do so. Dr. Lidia Schapira: Wendy, can you help our readers and our listeners understand your poem a little bit more? For some people, reading poetry is like perhaps reading a foreign language. They're not as familiar. Tell us a little bit about this. Bring us to the bedside and what happened there. Dr. Wendy Tong: Usually, the poems I write would be about specific patients that I've had and specific details about them. This is actually the first fictional poem that I've written in the sense that it's about breaking bad news, and it's written from an imagined perspective of a young leukemia patient hearing their diagnosis for the first time. As clinicians, we do have to break bad news to patients, not infrequently, though it's never easy. And, of course, it's a skill that I hope to work on for quite a while. At some point, I do think we become immune to the emotional heaviness of it, and we might forget or not fully realize what it means or what it truly feels like as the patient hearing bad news for the first time. Especially for younger patients, it's likely their first time hearing something that's often life-changing. So this poem is sort of a reminder, I think, for us as clinicians to try to stay mindful, empathetic, and considerate when delivering bad news, no matter how many patients we've seen that day or how tired or burnt out we are or whatnot. In this poem's case, we don't know exactly what the doctor said, but maybe they could have delivered it differently. And you can say there's a balance between beating around the bush and delivering the message, but there are also nuances in how you deliver it. Dr. Lidia Schapira: And in this poem, Wendy, you also bring out the delicate balance between the mother and the patient at a very tender age. So tell us a little bit about that. It's more nuanced than just about breaking bad news. It's how the news lands on the mother and the child and how they're responding to each other. Where did that idea come from? Dr. Wendy Tong: People are still living at home as teenagers, and sometimes parents are still taking them to doctor's appointments. And I think it's important, in general, for patients to have loved ones nearby as support when they're at important visits or hearing bad news. And in this case, I guess it's like a dual response. The patient is hearing the news, the mother, they're also watching their loved one hear the news, but they are also a little distant from it because I think the news is quite shocking. And so they kind of have to retreat a little bit inside. That's kind of what the last two stanzas are about. The lead-up is the patient kind of knows something is going on, but doesn't really know what it is. But actually hearing the words, the diagnosis, having that as a shock, and having those words change their imagination of how their future was supposed to go. So the last two stanzas are sort of a reflection, the patient going to their safe place and thinking about the things that hold them together, whether that is their relationship with their parents or their loved ones, and who are their supports. Small things about what I think makes life important to them or what makes life a good life to live. Dr. Lidia Schapira: Finding meaning, also, in the experience, in sort of crystallizing for themselves what their idea is of their own future, which has just been shattered probably by the news that was delivered. Does that sort of get it? Dr. Wendy Tong: I think so. I think so. The poem doesn't go into prognosis or what life will look like. And oftentimes we know now, depending on your type of leukemia, your cancer, your course can look drastically different based on what treatments are out there. But this poem was just trying to get at that initial delivery of the news and how this patient processes it and reaching for the support she has to get her through it. Dr. Lidia Schapira: So before we wrap up, I have two questions, and the first is very simple and may not have an answer yet. Does writing poetry make you a better doctor? Dr. Wendy Tong: I would like to think so. I want to be in a space where I am thriving ideally. I know residency, with its ups and downs, may not always be that place, but I hope to have a career where I feel fulfilled. And part of that also means, of course, doing what I love to do. But that also involves being inspired to write and to create. There is something there for me that I know I'm in a good headspace when I want to create. And the other piece of it, I do think writing poetry and writing, in general, just helps me pause and take things slower. And that act of thinking about what happened, writing, and editing makes me more appreciative. And it does help me remember patients more, I believe. It's like the act of metabolism itself is helpful, I do think. And I hope it would make me a better physician and more observant and more empathetic. That's my hope. Dr. Lidia Schapira: And tell me, Wendy, we can write to reflect, to process, but then the decision to publish and share with people you don't know is a whole different step. What made you decide that you wanted to share this with the world? Dr. Wendy Tong: When I was younger and trying to write things, whether it was short stories or fictional creative work, I was always too scared to show anyone. Writing feels quite vulnerable, and it's like the inner workings of my mind. Usually, I'm a private person and like to protect that. But for me, when I read good poetry, it's the simple language but it’s something about the choice of words and their specific arrangement that makes me feel something. And when I feel a certain way after patient encounters, it makes me want to try to capture and metabolize and also share that feeling with people I don't even know per se. But I think for me, poetry is about conveying not just a message, but a feeling across- that feeling is one of the reasons I wanted to go into medicine, and I think it’s going to be one of the feelings that will keep me going. Dr. Lidia Schapira: And we sure hope it does keep you going. Thank you on behalf of our readers for sharing your work with us. It takes the reader to an emotional space, and I think that it’s a gift that poets have for their readers because it allows the reader to project onto their own emotional space the feelings that they’re having in response to your work. So thank you for that, and keep writing. Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any... /episode/index/show/aoopodcast/id/30116128

The Heritability of Cancer: The Impact of Parental Cancer on Children 02/13/2024

The Heritability of Cancer: The Impact of Parental Cancer on Children Listen to ASCO’s Journal of Clinical Oncology essay, “” by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada. The essay is followed by an interview with Granek and host Dr. Lidia Schapira. Granek shares how her mother's diagnose with breast cancer continues to shape her own life and experiences. TRANSCRIPT Narrator: , by Leeat Granek I was 9 years old when my mother was first diagnosed with breast cancer and 25 when she died. The boundary between before and after is so clear that it feels like I have lived two lives. I went from being a careless, cerebral, quirky child to a rough version of the responsible, reliable, and vigilant adult I would eventually became. With cancer came the fear of losing my mother, and with that fear came an unwelcome but necessary maturity. There were other important life events impacting our family around that time that contributed to this sense of split. We had just moved from Israel to Toronto and knew few people in our new environment. My mother had just given birth to my baby brother, and my parents had bought a new house for our growing family. At the time, I was starting third grade in a new school—the fifth new school since beginning kindergarten. All this in addition to the diagnosis. My mother was only 33 years old—the same age I am now. While I adapted to everything else—new house, new school, new brother, new country—cancer insisted on sticking around, and it claimed not only my mother's life but, in many ways, my own. Cancer enters the body of the caregivers in ways that move far beyond the domestic work involved in the running of the house or the management of medications and appointments. It can become part of caregiver DNA through inherited genes, but it often does so in more insidious ways. My mother lived with the disease for 17 years before she died in 2005. It is fair to say I grew up in the hospital. Over the years, there were multiple surgeries, along with episodes of weekly chemotherapy and daily radiation sessions. She suffered a host of complications that came with metastatic disease and its treatment, including four instances of strep A bacteremia. Many major events happened in the hospital. We ate Chinese food with our matzos on Passover in her room and lit Hanukkah candles in the waiting room where we accidentally set off the fire alarm on the seventh night, to the consternation of the nursing staff. My 11th, 15th, 18th, and 25th birthdays were celebrated in cramped hospital quarters, cutting the birthday cake with a dull plastic knife. Indeed, the last birthday we had together was my 25th, and we marked it in the hospital 2 days before she died. In her last lucid moment, she managed to miraculously lift out of the fog caused by brain metastases to give me a kiss and exclaim “Mazal tov, Leeatie!” I remember the sounds and the smells. Static codes being called out over the hospital loudspeakers. The haunting “clink, clink, clink” of the staples being removed from my mother's skin graft and landing with a loud clatter in a silver bowl. The pale green hallways and their antiseptic smell, which I grew to hate. The airless temperature that was neither hot nor cold—hospital weather, I used to call it. The hospital, with its sounds and smells, was my second home. It sounds awful. And it was a lot of the time, but there were many good moments as well. My mother was smart, intuitive, funny, and astonishingly optimistic. She was always laughing and incredibly giving with her love and affection. We were exceptionally close. Her eyes lit up and her arms stretched out to give me a hug every single time I walked into her room. She would say things like, “Leeatie, I love you so much. I wouldn't change a single thing about you! How did I get to be so lucky to have a daughter like you?” and “There's no one in the world I would rather spend time with than you.” I didn't have to do anything to earn her affection. I felt that I always came first, that I was always wanted and loved, and that my mother was always entirely there for me in every sense of the word. The hospital days that punctuated much of my childhood, adolescence, and young adulthood were both an annoyance and a blessing. There was nothing else to do but simply be together, which was fun and easy, thankfully. When I was older and no longer living at home, I would sometimes sleep over in her hospital room during her admissions. We would curl up in the twin bed and talk for hours until we both fell asleep, or we would sit together, each absorbed in her own book, comforted by the warmness of being together. When I think about being a caregiver for my mom, and by extension a caregiver for our family, it was not the hours of care work—the babysitting, driving to appointments, spending time in the hospital—that consumed me. The impact was long-lasting and continues to this day. As a health psychologist and a researcher in the area of psychooncology, I know the permanent and long-term devastations cancer causes throughout the caregiver's—in my case, the daughter's—entire life span. To this day, I have no real sense of what normal physical development for a woman should feel and look like, and in some sense, I never will. I entered puberty around the same time my mother was having her breasts and ovaries removed, which made that phase frightening and emotionally difficult. And now, I have no mother to turn to and ask about my endlessly evolving female form, no mother to guide me through future pregnancies or talk me through gray hair and menopause. Cancer shaped my young adulthood and my emotional development. At 20 years old, I was dealing with issues facing 60-year-olds who care for ill and aging parents. Because part of me recognized that time was running out—indeed, because I lived almost my entire life with a neon awareness of my mother's mortality—I was tethered to home and making decisions about school, life, and love that would keep me close to her. I don't regret these choices or a single moment that I chose to spend with her, and now I have an entire lifetime to come and go as I please. Being challenged with a cancer-driven perspective at 20, however, carries risks of having an entire lifetime being developmentally out of step with one's peers and unprepared for life events outside a hospital. For example, at 25, I could look death in the face without trembling and without abandoning my mother at her end, but I was unprepared to face the dating world that most young adults would have no trouble navigating. Although I was and remain a loved, nurtured, and supported daughter, cancer diverted the vast majority of the temporal, emotional, financial, and physical resources in our family toward fighting the disease. When she was alive, my mother was fully present in my life. But even her unconditional love could not repair the reality of my out-of-sync development as a child and young adult or today make up for her continued absence in my life. My absent mother is at the core of a black hole of grief that remains inside of me and that has been painfully pried open with subsequent losses to cancer—my grandmother and my aunt, a professor I admired and family friend that I loved. Each loss re-exposes a haunting grief I have learned to accept and live with. Grief is a shadow that looms large in my life. It is both the topic I chose to study and the affect I advocate fiercely for,1–4 because as I have learned through my own experiences and research, love and light come from the same place as grief and darkness. The ability to grieve our losses fully also allows us to love and appreciate the people in our lives when they are still with us. And then, of course, there is the worry: the biannual check-ups, magnetic resonance imaging scans, and mammograms; the surveillance and the false positives and the constant paradoxical tension that comes with the awareness of the nature of these tests provide a false sense of control over a disease that refuses to be harnessed. The literature about the impact of parental cancer on children at the time of diagnosis, during treatment, after surgery, and even at the time of death is extensive,5–6 but few of these studies acknowledge how much this disease alters the life course of the child well after the parent has recovered or has died. Being a caregiver for a patient with cancer consumed much of my childhood, adolescence, and young adulthood when my mother was alive and charted the course for my future as a health psychologist working in the field of psychooncology. Although many years have passed and although I have a doctorate in hand, several years of postdoctoral training in the field of psychooncology, an academic career studying these issues, and dozens of publications from my research on the psychological and emotional effects of cancer on patients, caregivers, and their families,7–16 from time to time, I still feel like a scared 9-year-old child trying to gain control over this disease and get out of the shadow that cancer has cast on my life. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Leeat Granek, Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management. In this episode, we will be talking about her Art of Oncology article, "The Heritability of Cancer." At the time of this recording, our guest has no disclosures. Leeat, welcome to our podcast and thank you for joining us. Dr. Leeat Granek: Thank you so much for having me. It's a pleasure. Dr. Lidia Schapira: Your essay is a classic, and I'm so glad that we were able to include it in the recent anthology of Art of Oncology. So let's start by talking a little bit about what led you to not only write, but decide to share this essay eight years after your mother passed of breast cancer. Bring us to that moment. Tell us what you were thinking. Dr. Leeat Granek: Yeah, so that's a great question. And I recently, in preparation for this interview, reread it, and I was a little taken aback, even by how exposed and how vulnerable it was. But I really like that essay, and I'm really glad that it was published. It was kind of a culmination of a lot of thoughts that I was having as a person who has researched grief for many years, and as a person who was working in the field of psycho oncology, doing research in the area, and as a grieving daughter. And I think eight years is nothing in the grieving trajectory, right? We often think about grief as something acute that happens to you, and then you get over it and you move on with your life, and that certainly has not been my experience of grieving. I think it changes as you change, and it's just a constant presence in your life. And I was thinking about that in the context of being a caregiver for somebody who has cancer. So I think my experience is a little different than others, just because my mom was very young. She was 33 when she was diagnosed, and I was only nine. And she lived with this metastatic disease for nearly 20 years. So we had a very long journey with cancer. And I can kind of see now, as I reread it, the parallel thinking processes I had about grief and about cancer. And being a researcher in the field, I still feel that there are a lot of gaps in terms of the caregiver experience. But this idea of heritability, we often think about cancer as something you inherit genetically through our genetic makeup. But I think that it really, especially when you're young, changes your whole life trajectory. And I could not find anything in the literature that spoke about it in that very longitudinal kind of way and the way the impact of cancer changes you throughout your entire life. And so it just came from a very personal place, but also that intersection of being aware of the different literatures and how they came together. Dr. Lidia Schapira: Let's unpack this a little bit. One of the things that you just said was that you shared your vulnerabilities, and I want to ask you a little bit more about that. Here you are. You're about the same age that when your mother was living with this as a young woman. I think you said that she was diagnosed roughly at the time that you were writing this. And you decide to explore this wearing a little bit of your research hat in a very deeply personal way. But then the question I wanted to ask you is your decision to share this with the community of oncologists, the people you knew very well because they had looked after your mother for all those years. Tell me a little bit about that. How did you make the decision not only to write it, but to share it? Dr. Leeat Granek: That's a great question. This also pertains to the research that I do, because a lot of the research I was doing at the time, as a result of my experiences with cancer teams as a child, looked at the emotional impact of being an oncologist. I did a series of studies looking at the way oncologists grieve and how they feel when patients die, some of the emotional burdens of the work. And they were very vulnerable in sharing their experiences. And so I thought, well, they're telling me about their experiences, I can also tell them about mine. And I think that there's kind of a mythology around oncologists. I'm doing studies now on surgeons as well, and I think there's the same mythology around surgeons is that they don't feel or everything is compartmentalized and everything's separate. But from my research, I knew that that wasn't the case. And I felt that, although oncologists and oncology teams and nurses as well, witness patient suffering and family suffering, that there was nothing in the literature that kind of brought it home in this very visceral way. I don't think it would have been a surprise for any oncologist reading it, because when you follow families or when you follow parents, you see the children coming in. And so there was something about this intersection of their vulnerability and my vulnerability, enriching the experience of what it means to be a patient, and what does it mean to be a healthcare provider, which is not something that's often discussed in medicine at all. Dr. Lidia Schapira: So to your point, I think that telling the story was a beautiful sort of vehicle for opening up the topic. You were doing it through your research. But telling a story can often start a conversation in a very different way. That's what we try to do also in selecting these essays for Art of Oncology, to bring a story that's deeply personal, that reflects one's lived experience, but opens up a topic that is otherwise perhaps not talked about as much as we think it should. So let me go back and ask, what was the impact of telling the story on your research? Dr. Leeat Granek: I just want to add something about what you just said about stories. The very first paper that I published on oncologist experiences of grief, I wrote an op-ed for the New York Times about that research. And it was very story-based. It was very much telling a story, and I was telling my own story as well as a story about the research. And the response to that op-ed was so profound and so much more powerful than any paper I had ever published. I got thousands of emails from people around the world, oncologists and healthcare providers around the world, just saying how touched and how moved they were by that op-ed. And that is the power of the story that you're talking about right now, that we're vying for these peer-reviewed articles all the time. But actually, the impact of just telling a story is so much more meaningful and visceral for the reader than just outlining the research findings. Dr. Lidia Schapira: And it sounds like just receiving all of those emails after your op-ed was probably very validating. We can get rejected when we apply for grants, but people were telling you what you’re onto is really significant. Dr. Leeat Granek: Yeah. And I think that validating in the sense that what I felt was that as you, exactly the words you just used, that it was a conversation that was not being had to the detriment of all. And so it validated that feeling of, yeah, this is something that's really important for us to be talking about in oncology. And just in terms of the response to "The Heritability of Cancer," it was a long time ago. This is 2014, so 10 years ago. I don't remember entirely what are the specific things that people said, but I do remember getting a lot of emails about it, mostly from healthcare providers, so less from caregivers or patients who may not have subscriptions to JCO, but maybe through the podcast now will have more access. Just saying this really shed some light as to the experience of what does it mean for the extended family that I think is not often considered. Certainly, we don't think about kids very often when a parent is going through cancer. Dr. Lidia Schapira: If you were to write this today, what would you do differently? Dr. Leeat Granek: I think what's changed for me– I don’t think I would do anything differently, but what I think has changed is that I've had a child since I written that. Having a seven-year-old and thinking about what it's like to be going through a cancer diagnosis or cancer treatment while you have children. That piece was very centered on me and my experiences, and now I have even another layer of empathy and compassion for my mom, who had a newborn at the time. And I can just not imagine anything more– it’s going to make me cry just even now just by thinking about it - it’s just scary to have such a life-threatening diagnosis when you’re a parent. Just like grief, like I said earlier, being a victim of cancer or being part of your family, that impact is lifelong and it changes as your development changes. Now as a parent, my grief is different than it was before I became a parent. And now as a parent, my understanding of what my mother was going through is changed. That terror and fear is so overwhelming. Dr. Lidia Schapira: So, Leeat, I can't help myself, but I need to ask you some practical questions. You're a psycho-oncologist, an expert in grief, and you've talked to and interviewed hundreds of oncologists who have shared stories, you're now a parent, you’ve lived through it. What it makes me think is that when we think about grief counseling or support for grieving children or bereaved spouses or parents, you think about it as an acute intervention and what you’re suggesting is this needs to be explored throughout the life cycle. What are your thoughts about that and what should we be thinking about? Dr. Leeat Granek: I've written a lot about this in my grief work. The evidence for psychological counseling for grief is not strong actually when we look at the literature. For acute grief experiences in the immediate aftermath, sometimes it’s helpful having someone to talk to. But in actuality, the most helpful is having a community in which grief is an open, accepted, acknowledged, part of living life. And that does not change after the first month or the first six months or the year, five years or ten years. Other people may have moved on very quickly, but you’re left with the impact of that loss. And I think the impact of that loss is not only after, when the person has died, it’s also that progressive loss of function. The kind of witnessing of your loved one deteriorating. It’s not just meals that you need, you also need that emotional support. And that emotional support doesn’t necessarily have to take the form of, “Tell me about your... /episode/index/show/aoopodcast/id/29914303

Pet Therapy: How the Cat I Never Wanted Saved My Life 12/12/2023

Pet Therapy: How the Cat I Never Wanted Saved My Life Listen to ASCO’s Journal of Clinical Oncology essay, “Pet Therapy: How the Cat I Never Wanted Saved My Life” by Dr. Fumiko Chino, Radiation Oncologist at Memorial Sloan Kettering Cancer Center.. The essay is followed by an interview with Chino and host Dr. Lidia Schapira. Chino describes how she became an unlikely cat owner and how her "pet therapy" allowed her to move forward with life as a widow. TRANSCRIPT Narrator: , by Fumiko Chino My husband and I adopted our cat, Franklin, on a cold November day. It was one of the last days that Andrew felt well enough to leave the house to go anywhere other than to chemotherapy or a doctor’s appointment. Our news at these appointments had shifted toward the negative, with disease progression on scans, low blood counts, and fluid accumulating in places it shouldn’t be. After a year of aggressive treatment, his body was tiring out, and treatment options were becoming limited. Andrew had always wanted a cat, but I was resistant; I knew that I would be taking care of both of them and wasn’t sure that I was ready. At a certain point, though, if your dying husband wants a cat … you get a cat, right? Franklin was a rescue—a scrappy orange boy with stripy legs and a spotted belly. He played with my husband’s oxygen tubing, batting the plastic back and forth. He adapted quickly and would sit in Andrew’s lap in a warm furry ball, signaling his comfort with loud, full-throated purrs. He would play fetch with my husband, who often wasn’t strong enough to leave the bed. There was a large bowl of wrapped candy in the living room, and Franklin would bring one to the bed. Andrew would throw it from his propped-up perch in the bed; if the angle was perfect, he could fling it from the bedroom, through the slight zig-zag of the hallway, and into the large open living room. Franklin would race off to chase the candy and then trot back to deposit it one more time in Andrew’s lap. They could do this for hours, it seemed, until one of them tired and then they would nap. They both napped a lot. After Andrew died in March, it was hard to keep a schedule. Days and nights would drift into each other; it was the gray days of late winter before spring showed any promise of life. Franklin was my constant companion and followed me around the house, sitting in the living room to watch a movie or on a kitchen chair to stare at my meals, even into the bathroom. He slept at the foot of the bed and woke me up in the morning to feed him; he made it hard to sleep in all day and forced me to keep at least a semiregular schedule. I walked everywhere, trying to make simple tasks last all day; walking to get Franklin’s food from the pet store was a triumph of activity. We did, of course, take a lot of naps; sleep was an easy escape from my purposeless existence. He would fit his furry warmth in the crook of my knees or sprawl across my lap, mitigating the cold emptiness of a lonely day. He was a living presence when all I could see around me was death. Grieving is no simple process but, with time, I was able to return to some semblance of a normal life. I found focus in singular steps: researching school options, studying for the MCAT, interviewing for and ultimately entering medical school. One step at time (one application, one class, one shelf) is how I progressed from grieving widow to oncologist. Franklin would sit on the kitchen table where I worked, putting his paw occasionally on my papers or resting his chin on the warm edge of my laptop. He kept me company through grueling hours of studying and welcomed me home from the hospital at all hours of the night, greeting me with a small noise halfway between a squeak and a meow. Franklin was a welcome constant as I reinvented myself as a physician, a comforting touchstone as I shed my former life as an artist and wife and gained new footing as a clinician and researcher. I am now in my first year as an attending physician in a world-leading cancer center; Franklin has moved with me to a glorious, light-filled apartment in New York City. Looking back over the decade since Andrew died, I know that Franklin was the last gift that he gave me. I was so depressed and lonely; I don’t think I could have survived that first dark winter without his presence, much less made it through medical school and residency. That’s the thing about pets; you care for them, but they also care for you. Franklin provided that extra layer of support that allowed a desperate present to turn into a hopeful future. When I meet with patients and families struggling through treatment now, I try to highlight these simple support goals: physical company, a routine, love and warmth. We talk about who is available to help and what comfort they can provide. And for those struggling alone, I sometimes recommend they consider a trip to the animal rescue. I tell them, they may find that they get rescued too. I know I did. I moved out of that first house a couple of months after Andrew died. It was too big for just a lady and her cat. When I pushed our bed out from against the wall, I discovered a small pile of candy that had slipped behind his pillow down the back side of the bed. After he was gone, Franklin had continued to bring candy to my husband’s side of the bed and it had been piling up. I sat down on the floor of our big, empty house and cried big, ugly tears while staring at that stale candy. Then, like a gift, Franklin came over and sat in my lap, a small, warm presence, purring. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm an Associate Editor for Art of Oncology for JCO and a Professor of Medicine at Stanford University. Today we are joined by Dr. Fumiko Chino, a Radiation Oncologist at Memorial Sloan Kettering Cancer Center. In this episode, we will be discussing her Art of Oncology article, "Pet Therapy: How the Cat I Never Wanted Saved My Life." At the time of this recording, our guest has no disclosures. Fumiko, welcome to our podcast, and thank you for joining us. Dr. Fumiko Chino: Thank you so much for having me. I'm happy to be here to talk about my pet Franklin, but also to talk about how our animals care for us just as much as we care for them. Dr. Lidia Schapira: That's a beautiful thought. Let me first start by just expressing my sincere condolence over the loss of your husband. We have met so many times at medical meetings and have had a chance to talk about work, but this is really personal, so I just wanted to start our conversation by acknowledging that very important part. Dr. Fumiko Chino: Thank you. I think a lot of us are drawn to the field of oncology for one reason or another. Sometimes we're anchored by the experiences of our friends or our family members, or that one patient that you couldn't get out of your head in medical school. Mine, obviously, I think, started a little earlier than most with my husband's death, and it kind of drew me kicking and screaming into medicine and then into oncology. But against my sort of better angels, I ended up in oncology. The roots of this tree are strong, basically. Dr. Lidia Schapira: So let's talk a little bit about that and the experience of being a care partner, a caregiver, a caretaker. As a very young woman, I think you were an artist at the time, not in medical school. Can you bear to share with us a little bit about that part of your life, those years or months? Dr. Fumiko Chino: Sure. So I always say that caregivers are kind of the unpaid glue that keeps the US healthcare system together, functioning, working. And the caregiver experience and the burdens that caregivers have are sort of just barely being explored now within research. And I can certainly tell from my own personal experience that being a young caregiver was very challenging. My husband and I were both in our 20s. We were trying to establish our careers. We had a significant battle about his health insurance, which is a very common problem for young people. And even after he died from cancer, I actually was uninsured because I was on his health insurance. So it's hilarious for me now as a researcher who does research on access and equity and insurance that I myself was uninsured for, I think, about two years, actually. But those burdens of caregiving, they're sort of physical exhaustion, they're mental exhaustion, but they're also emotional exhaustion. And it's sort of all of the above, all hands on deck when someone you love is sick. And I think it's part of when I shift into research mode or patient centered care mode, I always try to think about the complete picture for the person in front of me, which is also their spouse, their parent, their sister, sometimes their friend, who are also, I think, part of the journey of cancer, but often sort of unacknowledged. Dr. Lidia Schapira: Let's talk a little bit about that, the sort of the emotional side of caregiving. Yes, you talk about burdens and exhaustions, but what I read in your essay is also about the love and connection that you experienced during your husband's illness with him. And then this third party, the story is this adorable cat. Can you talk a little bit about that? All of the positive side, not the burdens of caretaking and caregiving, but the love and connection. Dr. Fumiko Chino: It's sort of shocking when you go through something critical together, how much that bonds you, how much it deepens your connection and your capacity for communicating effectively and making hard decisions. I always say my husband and I were only married for a year, essentially before he died. But it's like dog years. One year of cancer is sort of like seven normal people years. And so we had so much love and humor and insider jokes going through the experience. It's certainly never recommended for anyone. But I will say that it made me realize how much I did love my husband, how deeply connected we were. And then this introduction of a small, fuzzy animal was something that I never realized that would make a difference for me personally, but that would carry me forward through my husband's illness and his death and kind of help me become the full me that I didn't even know I was supposed to be at the time we adopted Franklin. And then again, the love that we had together, our little tiny family unit, a cancer patient, a cancer caregiver, and a rescue cat. We were quite a cohort for as long as we lasted. Dr. Lidia Schapira: And the other incredible theme that emerges from your essay is the grief and the deep, deep grief that you experienced. How long did it take and how did you manage to climb out of that? Dr. Fumiko Chino: I mean, I'm still grieving, right? So that's the thing about grief, is that it changed shape and color, but it never really goes away. There's this phrase, time heals all wounds, and that's certainly not true. I think that the wound is different. It's not quite as raw, but I'm still grieving. But in terms of pulling myself out of the deep depression that I was in, it was years. I'll be honest. I was sort of groundless. I had no purpose. I feel this sometimes as an oncologist too, which is we feel that when our patient dies that we failed. I only had one job. It was to keep my husband alive, and I didn't do it. And so it took a long time to kind of rebuild myself and my personality when I had quit my job to take care of him. So it really was my only purpose. And then when that went away, it took a long time. It's interesting to be on the other side of it now and to sort of think about, well, what are the lessons I can take away from that? To try to practice for myself truly patient centered care and to think about everything that our patients and their caregivers really need to continue on because it's not an easy thing. Dr. Lidia Schapira: Let me just say this and that is that it is absolutely amazing that you have constructed sort of a professional persona from this experience, but it's also your experience and your story. And what I'm so deeply moved by and a little curious about is you're taking it to a story and bringing the narrative side to your professional community. It's not as if you wrote a story or journaled about this and shared it with your friends and family. You actually made yourself vulnerable in a way. And I just want to pick up on that a little bit more because clearly from where I sit, this makes a huge contribution to the discourse in oncology as well, to acknowledge the personal side, the emotional side, and make it a story. And so with that, I just wanted to ask you this. How long did it take or what was the process for this series of experiences that are so intense and emotional to become a story and something you could write? Dr. Fumiko Chino: That is such a good question. I will be honest to say that I didn't tell any stories at all about my husband having cancer until long after I decided to become an oncologist. And it was only when I was doing the research that I was doing in financial toxicity where I realized that story could make the message of the research more powerful. I knew always why I was doing the research. But having that deeply rooted, personal, let's be honest, terrible story, it could make it more meaningful, it could make it more understandable for people who hadn't personally experienced it. And so I think, similarly, realizing that the larger story of love and loss and of caregiving but also of how these funny things like pets that can make a difference for individuals and families, to develop that into a story that you could tell, again, a decade, to think about how that could turn around essentially into something that is not just a feeling, but is words and paragraphs. Dr. Lidia Schapira: Yes. And it was obvious to me when I first read it, the beauty of the position that I have as an editor is that I'm the first reader, is that I felt that I felt the enormous amount of years that went into processing these feelings and then how skillfully you introduce the humor and through the character of the cat. And the cat going to fetch the candy wrappers and bringing them back. I mean, it's beautiful. One of the things Fumiko that I've so admired also about your work is your advocacy, your advocacy for trainees, your advocacy for inclusion and diversity, and your advocacy for pets. Tell us a little bit about how those strong commitments you have to bring people up and to sort of change things for the better are also deeply rooted in your lived experience. Dr. Fumiko Chino: I have in my life been incredibly privileged. I know this deeply. And I know that even the turning of round of my life from being a grieving cancer widow into being a physician today is deeply rooted in my privilege, from being from a medical family, from being from an educated family, from being from a family where everyone was expected to go to college and succeed in one way or the other. And so realizing that not everyone has that privilege of being able to overcome these obstacles because it's just a pile on. I think sometimes being able to provide that sponsorship and mentorship for other people has been just a strong pillar of my personal mandate for the physician that I wanted to be, for the researcher that I wanted to be. It's rooted from the fact that there's been some bad things that happened in my life, obviously, but my capacity for moving forward and reinventing myself is deeply rooted in my own privilege. Dr. Lidia Schapira: To bring this short conversation to a close, I wonder if you can reflect a little bit on the role of art. I mean, every time I just see you, I think of art. There's a sort of an artistic aura about you, just the way you accessorize yourself and how you present yourself and all of the images that you choose to post. It's a very deliberate image. So tell us a little bit about both visual art but also stories and how you feel in your role as an academic oncologist they can humanize our culture, they can inspire, they can help, they can even inform research questions. I'd love to hear your thoughts about that. Dr. Fumiko Chino: Whenever I was in high school, I had these two great loves, and they were science and they were art. And unfortunately, I think I grew up in an era where you really did have to go one way or the other. And so for me, I chose art. And so I had a Bachelor's of Fine Arts. I was immersed deeply in the art world as a young adult and as a growing faculty. It was only cancer that kind of brought me into the science again. But having been immersed in art for so long, when I transitioned over to the more medical school residency, now as an attending, I never wanted to leave the art behind because it so deeply informs how we view the world. And I think that perspective, that shift that comes with looking at a new piece of art, it makes us all stronger observers and, I think, stronger communicators. And we all approach art very differently. The example I'll give is that my husband was really into jazz, and I hate free jazz. It just drives me insane. Because for me, my question always is for a piece of art - so in this case, free jazz - what are they trying to communicate to me? And he said, “Well, that's not how I take it. I say, how would it feel to make this music? It's the actual mechanics of making the music and absorbing the music.” And that's how he interpreted that form of art. And I was just always like, “Oh, but I don't get what are they trying to tell me?” And I think that is also just incredibly amazing, that art communicates different things to different people. And it reminds me to take a break and to say, you know what, I feel so steadfast in my opinion that this is the right way of doing something and it could be that someone is going to take it in a totally different direction. Dr. Lidia Schapira: Let's end on a note on Franklin. Is Franklin still with you? Dr. Fumiko Chino: So I was happy to be recording this podcast now. So Franklin died last month. Dr. Lidia Schapira: I'm so sorry. He died in my home with a home hospice vet. And it was really beautiful. It was exactly what I would want for myself if and when I go, to be surrounded by love and comfort. He was with me for 17 years. Obviously, got me through a lot. And it was a message to me how we could be doing better for our patients as well. He did have cancer, and he had cancer that was rapidly growing. And so that way of putting a bookend in our experiences with cancer, I feel like it was the last message that he gave me that that's the gift I could give to him. Dr. Lidia Schapira: Well, take care of yourself, please. Again, my condolences on losing Franklin. Thank you for your openness and for your willingness to share. So we are so fortunate to have you in our ranks. I'm very glad that you're doing what you're doing. Dr. Fumiko Chino: I appreciate the time to talk to you again. This message about a silly cat and his human, I think, certainly it's my story, but I know that many of our patients also have this deep connection with their animals and it really does carry them through some very dark nights. Dr. Lidia Schapira: So until next time and thank you for joining me today in this very moving interview. Thank you for listening to JCO's Cancer Stories: The Art of Oncology, and for our listeners, don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO Shows at asco.org/podcast. Until next time. 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... /episode/index/show/aoopodcast/id/28888003

Gosses and the Dalmatian Puppy: A Memory that Halts the Pain 11/28/2023

Gosses and the Dalmatian Puppy: A Memory that Halts the Pain Listen to ASCO’s Journal of Clinical Oncology essay, “” by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient. TRANSCRIPT Narrator: , by Zvi Symon, MD A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly. My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor’s stricture, so radiation therapy became the last option. On the edge of the bed near the hospital room’s window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: “I don’t feel well and… cannot eat.” His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir’s wife. “Tell me a bit about Vladimir, what did he do before he became ill?” I drew up a chair and sat closer and she sighed. “He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk.” A smile flickered across her face briefly. “Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight.” I was touched and saw the tears in her eyes flowing freely. “Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?” I asked. “We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband.” I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir’s wife told me that she had heard that radiation therapy could help. And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula. Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance to say goodbye forever and even to confess and bless and confide? Patients and family are so often focused on the battle against the disease; they are loath to any suggestion of not doing, despite the minimal odds for a helpful treatment. I saw Vladimir’s wife struggle to control her tears. She seemed so vulnerable and carried so much on her shoulders. I wondered if a hospice discussion, at that moment, would add to her huge burden. There was also a part of me that also debated, selfishly, if I should launch into a lengthy end-of life discussion with the angry waiting patients outside my clinic door? So often, we turn to our treatment armamentarium to avoid these deeply painful and complex discussions surrounding the end of life, particularly with patients we barely know. I breathed deeply, calmed myself and decided to keep it simple and avoid the dilemma. I gently explained that I could not guarantee good results, but radiation therapy may improve his pain and perhaps allow him to eat and drink. It was the answer she was looking for, though I grimaced as I wondered if it was the answer I should have provided. She seemed relieved and encouraged Vladimir to sign consent. Vladimir arrived at the computed tomography (CT) simulation suite sitting bent forward on the stretcher, drooling into the bowl between his legs. The radiation therapists, already running behind schedule, looked at each other, as if wondering if this was another futile heroic effort. “I know what you are thinking,” I said to them. “But perhaps we can help. Let me tell you something about Vladimir, he had a Dalmatian puppy he loved, who took him out of his home for a walk every day after years of deep depression.” Vladimir was contorted in pain, and the attempt to transfer him from the stretcher to the CT couch seemed impossible. All eyes turned to me with a perhaps this is too much look. Suddenly, Ilan, a young Russian-speaking radiation technologist who had recently joined the department, had an idea. “Vladimir, rest a few minutes. You know, I too have a Dalmatian, let me show you a picture.” The deep lines on Vladimir’s face faded into a broad smile as he took Ilan’s cellphone to see the picture of the dog. From the look on his face, he seemed to be transported far from the simulation suite, and I imagined him romping with his Dalmatian puppy in a sun-swept meadow with gurgling streams and lush green grass and watched as Ilan then slid him effortlessly onto the couch of the scanner. The scan was completed, Vladimir returned to the ward, and I retreated to my workroom to complete the contouring of the structures for the radiotherapy plan. It was a nasty 12-cm mass involving the full circumference of the upper esophagus and eroded into the trachea, almost obstructing the left lung. The dosimetrist calculated a conformal treatment plan, and as I approved it, I uttered a little prayer that this would make him more comfortable. Suddenly, Ilan rushed in, hair tousled, pale and agitated, and eyes red. We were too late. On returning to the inpatient ward, Vladimir experienced a massive aspiration and died less than half an hour after we had scanned him. Ilan was terribly upset. As a young therapist, this was perhaps his first patient who died so quickly and unexpectedly. I tried to comfort him. “I know it hurts, but nothing we could have done would have changed what happened. Did you see his face after you mentioned his puppy and showed him the photo of yours? We did our best for him.” After Ilan left my room, I reflected on the day’s events. Was Vladimir what the rabbis refer to as a “Gosses?”2 (Gosses is a Hebrew word meaning a moribund patient). And if that was the case, was I wrong to even transport him from his room? When death is imminent in hours or days, Jewish religious law defines a state of Gosses in which it is forbidden to touch or move a moribund patient in case this could hasten death. The guttural rattle of a dying patient, unable to clear secretions, indicating death within hours or days, reminded the rabbis of the sound of bubbling when stirring the food in the cauldron. This onomatopoeia, in addition to a didactive narrative identifying the significance of performing an action which potentially changes the natural course of events, resulted in the analogy that moving a terminally ill patient which may hasten death is like stirring the food in the cauldron which may hasten the cooking on Sabbath, hence the term Gosses. The ancient rabbinic sages from the beginning of the first millenium drew an additional analogy between touching a Gosses and touching a dripping candle at the end of its wick which may hasten quenching of the light. Another aspect of the law of Gosses forbids performing any act which may prolong suffering and delay a merciful death. Thus, moving a patient to receive a futile treatment would also be forbidden under law of Gosses. 2000 years later, the notion that we should neither delay nor accelerate death was front of mind formeas I reflected on my treatment of Vladimir. I wondered if the ancient rabbis incorporated into their moral discussion the difficulty of stopping the roller coaster of trying to do more and more to help the patient. How about when the treatment itself fell into a gray area of effectiveness? What advice would they have given a physician with competing demands on his time and a waiting room full of outpatients who demanded his attention? In retrospect, the painful journey of Vladimir down to the simulator may have hastened his massive aspiration and would have been best avoided. In that sense, the Gosses may have been violated. But it also allowed him and Ilan to meet and share wonderful memories of a Dalmatian puppy which made him smile and forget his pain, even for a few precious moments. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Zvi Symon, until recently Chair of Radiation Oncology and currently Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School. In this episode, we will be discussing his Art of Oncology article, “Gosses and the Dalmatian Puppy.” Our guest disclosures will be linked in the transcript. Zvi, welcome to our podcast and thank you for joining us. Dr. Zvi Symon: Thank you, Lidia. I'm very happy to be here. Dr. Lidia Schapira: To start, I'd like to ask authors to tell us what they're reading or perhaps what they've enjoyed reading and would like to recommend to fellow listeners. Dr. Zvi Symon: Okay, so it's been a bit of a stressful time reading, but I may mention some books I've read in the last few months. I've been reading memoirs. One that I particularly found very touching was Paul Kalanithi's, When Breath Becomes Air. As a physician who had cancer himself and his struggle with his transition from being a consultant neurosurgeon to being a terminal lung cancer patient, I think it's an amazing and beautifully written and touching book. Dr. Lidia Schapira: It’s a beautiful book. It's evocative and fresh. And you're absolutely right - we're completely in sympathy with and empathic with his amazing desire to live life till the last moment, right? It's just beautiful. Dr. Zvi Symon: It’s really beautiful. And I think that memoirs is a very powerful genre for me. And another book that I enjoyed very much is Jan Morris' Conundrum, which is a story of a person who made a transition from male to female over 10 years. She was actually a member of the British team that climbed Everest and a journalist in The Times. It's a beautiful book describing what she actually felt inside and how she went through the medical process as well, of her sex change. And it's also beautiful. Dr. Lidia Schapira: Thank you for that. I haven't read it, but I will add it to my lovely list here. Tell me a little bit about writing and what that means for you. Are you somebody who has been writing throughout your career, or was this a story that sort of popped for you, that just needed to be told? Dr. Zvi Symon: Right. I think it goes back to when I was a high school student where my Math teacher told my parents, "Your son shouldn't do medicine. He should study English literature." My parents were devastated by that statement because my father was a physician and my mother's family were all physicians, and they were very angry at the time. And I was kind of a writer in high school, and then I kind of left it through my medical career. And now, as I have sort of finished my stint as the chair of the department and I have a bit more time on my hands, I've sort of tried my hand at getting back to writing. I needed to read a lot in order to do that. So I was reading genres. I think maybe some of the initial versions of this piece were written sort of more as a memoir, rather than an article for the Art of Oncology. And I think you guys helped me a lot. Dr. Lidia Schapira: I'm so glad to hear that we helped. Sometimes editors aren't particularly helpful in the views of authors, but I'm glad you feel differently. So let's talk a little bit about the creative process and sort of bringing in all of these themes that you did here. And back to your prior comment that this is in the memoir genre. You have a very interesting philosophical discussion of what a Gosses is and sort of the ethical moral conflict when a patient is extremely vulnerable, instead of recognizing when perhaps all that you need to do, or perhaps what you need to do is to be present instead of trying to fix or intervene. And I loved how you made us all really suffer with you, as you're debating this internally. Can you talk a little bit about that part of the story? Dr. Zvi Symon: Yes, I think just to put it into context, in my training in internal medicine, I worked in a hospital where hospice care was part of the rotation in internal medicine. I spent three months in the hospice, and at night, when we were on call, we were in charge of the ICU and the hospice. So you would be called to treat a patient in pulmonary edema and with CPAP, or intubate him or an acute MI, and then you would be called to a dying patient in the hospice. And the transition was initially very difficult for me. I actually felt my feet would not carry me to the hospice, and I didn't want to go there, and I had to kind of force myself. But after some time, I realized that it's actually much easier to treat pulmonary edema to than be able to sit and listen and talk to a dying patient. But the fulfillment that I began to feel when I overcame that kind of fear of going to speak to a dying patient, the fulfillment was far greater than getting somebody out of pulmonary edema. And that's kind of stayed with me to this very day. So although radiation oncology is a kind of something you have to do, and you sort of radiate, when I'm called to patients like this, and I do have time, then I kind of sit down with a patient and discuss the options and try to give other options because very often it's a kind of turf in the house of God. Somebody doesn't want to have that conversation with a patient, and they're kind of turfing the patient in a house of God sense to have some radiation. And I'm not sure that radiation in such cases– So this is something that I'm confronting quite often in my daily practice, and it becomes more and more complex culturally because when one is confronted with families who also want to be very active and are dreading having to live with the idea that maybe there's something they could have done that they never did, and they're putting a lot of pressure, then it's a very tough situation. So I'm very sensitive to these situations. I've often had end-of-life discussions with patients like that, sometimes against the wish of families that are close by. And the patient would say- well, they'd say to me, 'No, don't talk to him." And the patient said, "No, I want you to go away. Because I think this is the first time someone's listening to me, and I want to hear what he has to say." I feel very passionately about these– Dr. Lidia Schapira: I have so many comments that we would need hours to discuss. But, of course, the first comment I wanted to make is that some of the most humane oncological specialists I know are radiation oncologists, so I don't see you guys as just treaters and physicists wearing scrubs. I see you as incredibly compassionate members of the cancer team. And that brings to mind a lot of the current discussion about palliative radiation, this idea that we can just throw some rads at people because there's nothing to lose and maybe there'll be some improvement in function. So can you talk a little bit about that? I mean, here you are in a very busy clinic falling behind. You've got to walk through a waiting room of people who are sort of looking at you saying, “How can you be walking out when we had an appointment with you half an hour ago?” And you go and find Vladimir, who's despondent and can't have a conversation with you. And I'm pretty sure that you must have been going through this internal conflict even before you met your patient about what to do. Tell us a little bit more about the emotional impact for you. Dr. Zvi Symon: Yeah. With great trepidation, I actually go up to the department to speak to a patient like this. I think the electronic medical record, for all the problems with that, it allows us to kind of really quickly glimpse and get a true picture of what the situation is. So I had seen the imaging and I'd seen the size of this really very nasty tumor. And I sort of remembered the literature that it's a relative contraindication and it actually may make things worse. But I was getting calls from the department and the medical oncologist who consulted that I must see this patient, and they want that patient to get treated today. So with a kind of a heavy heart, I go up the stairs. I breathe deeply on the way to calm myself and take the staircase up to the 6th floor and walk very slowly up the stairs, trying to go through my mind, what am I going to do, and kind of enter the ward. And then I am confronted by this person who is terribly suffering, very terribly. And he doesn't actually want to look at me at all. His eyes can't meet and he looks kind of, his eyes are very dull. And I see his wife watching me and watching him and turn to her. They are immigrants to the country. And there's also a cultural issue and language problems and difficult socio– Dr. Lidia Schapira: If this were fiction, you could not have made it harder. I mean, when I remember reading the manuscript thinking, this poor immigrant, he's depressed, his son is depressed, the other son has COVID, his wife is weeping and says she's the one who's tried to make ends meet. You have all of these barriers in addition to this internal clock that you have somewhere else to be. Can't begin to imagine the pressure. So how did you get through that? Dr. Zvi Symon: Yeah, I think my mind was kind of ticking over and I think that sometimes we make very practical choices. And I knew that if I sat for too long and I fired a warning shot and said, “Well, this may not help and this may not do it,” but I think that culturally I had the feeling that it was the wrong thing to do and that there was an expectation and the expectation had been created by the team, and it's very difficult to turn down that expectation. And I also felt that she was so frail and that she had really no support and maybe if one of her kids would have... /episode/index/show/aoopodcast/id/28723978

The Gift of Truth: Finding Closure After the Last Oncology Visit 11/14/2023

The Gift of Truth: Finding Closure After the Last Oncology Visit Listen to ASCO’s Journal of Clinical Oncology essay, “” by Dr. Ilana Hellmann, an Attending Physician in the Hematology Department at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann shares how it is an immense privilege and grave responsibility for physicians to give bad news to patients who have a terminal disease. TRANSCRIPT It was a hot and humid Tuesday in July, and I distinctly remember being grateful for the air conditioning in the pastel-shaded waiting room of the oncology outpatient clinic. My father sat silently beside me. We knew this room well, as we did the doctor we had arrived to see. He had been my late mother’s oncologist until she had passed away just over a year previously from metastatic breast cancer. Dad remembered him being kind yet direct and had requested that he be his oncologist now that he needed one. I watched his hands fidget with the slip of paper bearing the number that would be called over the loud speaker. My father was 84 and a retired university professor of statistics. He spoke seven languages and his friends called him the encyclopedia as he was an endless fountain of knowledge in history, politics, literature, art, etc.…. His number was called, directing us to a room we had been in many times before. After greetings and some small talk about my late mother, Dr Cohen addressed my dad and slowly went through the history. He had had surgery for a squamous cell carcinoma on his scalp along with skin graft 6 months earlier. Two or 3 months later, he complained of pain in his right hip which seemed to worsen by the day. After some imaging and assessment by an orthopedic surgeon, a diagnosis of osteoarthritis was declared, and the treatment recommended was a total hip replacement. The surgery was performed and my dad, who had been suffering from extreme pain, felt immediate relief. He was delighted with the results of the procedure, delight that dissipated in an instant when the pathology report came back: metastatic squamous cell carcinoma. He had been quickly referred for a course of radiation which had been completed. This meeting was intended to discuss further treatment. Dr Cohen gently explained that my father’s cancer was not curable and that there was no good treatment available for him at that time. I do not really remember much of what was said after that. I found myself thanking him for his time and helping my father to the car. The drive home was awful, with awkward silence broken only by a discussion about what he was going to have for lunch. We both pointedly avoided talking about the meaning behind Dr Cohen’s explanations. I was stunned. I felt like my father had been fired by his doctor and that I had been left to deal with the consequences. I felt alone, abandoned, and betrayed. The next few days passed quickly as I juggled my busy hospital schedule with family dinners, school runs, and the sporting activities of my three boys—the oldest of whom was 11 years old at the time. The weekend came, and on Saturday morning, my husband and I planned to meet friends at the local swimming pool as we so often did in the hot summer months. Leaving him to clean up honey and pancakes, I went across to the apartment opposite ours to say good morning to my father and tell him we would be gone for the better part of the day. He was sitting up in bed and said: “Before you go, please bring me my phone book.” He still used an alphabetized phone book, mostly in my late mother’s hand writing. I found the book and held it out to him. “Find David Green’s number” he said, which I did. “Dial it please” he said while looking for his glasses on the bedside table. I dialed and handed him the phone. I then listened as he greeted David—an old colleague from his years in academia. Dad had not spoken to David in many years. He explained that he had cancer, and that he did not have much time, but that he wanted David to know how much he had enjoyed working with him and to thank him particularly for his contribution to an article they had published together. I got up to go and, seeming not to notice, he asked me to dial the number of another friend. Realizing this was going to take some time, I called my husband and told him to take our boys to the swimming pool without me. I sat down next to Dad on his bed and dialed number after number. My parents had lived in a few countries, and my father’s academic career had connected him with people all over the world. Over the course of almost 6 hours, he spoke to friends, relatives, old neighbors, and many work colleagues. He had a personal message for every one of them and started each conversation with a clear and brief explanation of the circumstances of his call. There were some people who were not home for his call, and he left long messages on answering machines. Those 6 hours were cathartic for the both of us. It was sad but also terribly beautiful and filled with my dad’s signature black humor. Once we had contacted everyone in the phonebook, he continued his mission and gave me a list of people he wanted to be present at his funeral, as well as a second list of those he would prefer not to be there. Then, he handed me an envelope which contained a substantial sum of money. “This” he explained “is for the gentlemen who come to take my body.” My mother had died at home, and he remembered the two ambulance men who had come to take her body to the morgue after she had passed. He had been struck by the difficulty of such thankless work and wanted to make sure they were appropriately compensated. Very soon after that Saturday, my father had a seizure and was diagnosed with brain metastases. As dad had made it very clear that he wanted palliative care and no admissions to the hospital, Dr Cohen connected us with the services of home hospice care. He deteriorated rapidly and died at home, as he had wished, 3 months later. The money in the envelope was duly delivered to its intended recipients, and there are some people who were not at his funeral. I have often gone back to the conversation in the oncologist’s office on that July morning. Oncologists conduct end-of-life discussions with their patients every day. How does one tell the patient the truth without taking away every ounce of hope? Does every patient have to know that he is dying? I had never thought about the immediate consequences of what I say to my patients and their loved ones until I had to get my dad to the car and spend those eternal 20 minutes with him on the drive home. Bad news is difficult for those on the receiving end but no less so for those given the task of delivering it, especially when it concerns a terminal illness. There are some physicians who avoid telling their patients that their disease is terminal altogether. In not telling patients of the terminal nature of their cancer, are we protecting them or ourselves? And are we preventing them from being able to use the time they have left in a way they would wish with the knowledge that time is limited? There are those patients who cannot or will not talk about death. Knowing how much to say to each of our patients, and choosing the appropriate words, is an art. The task entrusted to physicians of giving bad news is both an immense privilege and a grave responsibility. My father received a brutal gift that day. But brutal as it was, it was a gift that enabled him to part, to make peace, and to prepare for his coming death. I have since had countless conversations with my own patients about their imminent demise. I constantly remember my father and that special Saturday. My memories are of tears, and of laughter, and most of all, of a sense of closure for the both of us. I hope that I am able to give my patients their truth in a way that will make it as much a gift for them, as it was for him. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Ilana Hellmann, who is an Attending Physician in the Hematology Department at Meir Medical Center in Israel. In this episode, we will be discussing her Art of Oncology article, “The Gift of Truth.” At the time of 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. It's wonderful to be here. Dr. Lidia Schapira: You've been on our show before, so let me just start by diving right into your beautiful article. It honors the memory of your father, a Professor of Statistics, who had an encyclopedic knowledge of the world and spoke seven languages and was known by so many different people. And you start by bringing us to the moment in the waiting room of the oncology department that was familiar to both of you because your mother had been a patient and you had very carefully selected the oncologist for your father. You say it was a July humid day, and his number is called. And then what happened? Dr. Ilana Hellmann: Well, as I wrote, all the moments that you've just repeated from the article are things that are imprinted in my mind as if it happened yesterday. My father passed away in 2014, and there are those moments and many others that I remember very, very clearly. It's something I hear from my patients also all the time. They remember exactly the day they received the diagnosis, the time of day, they tell me what I was wearing when I told them whatever it was I told them. And it's something that struck me that when I went back to that day and many other things that happened afterwards, I remembered every second. I think I knew what the oncologist was going to say in retrospect, but at the time, maybe I didn't think about it. It's very interesting that we as physicians, especially oncologists, we know exactly, but when it comes to family members, we're a little blind. And I've had this experience a few times since my mother passed away from cancer. My father and my father in law passed away just over a year ago, also from metastatic pancreatic cancer. So we know it very well. Dr. Lidia Schapira: Sorry. Dr. Ilana Hellmann: As I wrote in the article, I remember going in with my father. I remember the conversation, or at least the beginning part of it, but once the message hit home that, “This is what we have, the bottom line is there's not a lot we can do. We certainly can't cure your disease.” I don't remember anything else that happened after that. Dr. Lidia Schapira: And you described the ride home after that. You mentioned that you felt your father had been fired, had been fired from anything that was perhaps curative or offered sort of some optimism, perhaps the conversation was a little deeper and supportive and offered some palliation. But what you took away was that this was awful. He was fired. Then you say the ride home was really difficult. Tell us a little bit about that. What was it like to leave the oncologist office as the sort of informed knowledgeable daughter who had just received this message? Dr. Ilana Hellmann: Exactly that. And I kept thinking in my mind, “How much do I say, what is he thinking? How much does he understand?” I was almost jealous, a little of people who have no medical knowledge. So much easier. Maybe it's not, but I think it's really tough for physicians as family members of patients who are unwell. But my father was, as I described, an exceptionally intelligent person, a real intellectual. He was enormous, not physically, but there was nothing he didn't know. You could ask him anything. He read the dictionary for fun. These are things that he liked to compare languages and cancer made him very small. And it was awful. It was just awful, awful to see. And that moment, it was very emphasized how small he was. He was just silent. There was just nothing, and I didn't know what to say. I felt absolutely helpless. And as I described, that drive is 20 minutes, maybe even a little less. It was endless. And I remember that I went home with him. It was lunchtime, and I dropped him at home and I went back to work. I think I had taken the day off, to- I didn't know what was going to happen with the oncologist, and I went back to work because it was easier to go back to work than to stay at home. And he was silent. He said nothing. And the next time I understood what he was going through was on that Saturday with everything that happened. Dr. Lidia Schapira: So fast forward to that Saturday, I imagine that you were busy with your children and your work, and it was easy to– I’m going to use the old fashioned word compartmentalize, put this aside for a little bit. And then on Saturday you’re going in to say, “Hey, I’m going to take the children to the pool. How are you?” And he had a completely different idea of how you were going to find yourself spending the day. And I think that’s such a powerful scene in the essay when you say that he started one by one asking you to dial his contacts, his friends, his colleagues and give a message. Tell us a little bit about how that felt and bring us to the bedside or to the scene if you can. Dr. Ilana Hellmann: So there's dad. He's in bed. He's got his morning cup of coffee. He lived with a full-time carer at that stage, who brought him some breakfast and a cup of coffee. At some stage, she brought me a cup of coffee. He was very, very focused. It was like I was an assistant, just doing what he needed so that he could talk to all the people he wanted to talk to. It was crazy. It was like watching something surreal. There were people he hadn't spoken to in 20 years that he called. He had no concept of what time it was in various parts of the world, so he woke people in the middle of the night. It was really quite something. People didn't believe me afterwards when I told them the story, and as I say, some of the conversations were very, very humorous. My father had a wicked sense of humor; very black sense of humor. So, there was lots of laughter mixed in with, “I'm dying, and I have cancer.” Lots of humor, and there were a lot of tears, mostly on my part because my father was not a tearful type. He was emotional, but he didn't cry. But I remember being very tearful. I didn't know all the people. Some of the people were people I'd heard of when I was a child, all sorts of neighbors, people we'd lived next door to years before when I grew up in South Africa. And when he'd finished, he had this sense of- he was satisfied, “I've done what I had to do.” And then he moved on. He had his list of things he had to do, the money he wanted to give to the ambulance workers, the people he wanted at his funeral, he didn't want to go to his funeral. It was typical of my father to do something like that. He planned everything. And it was like he'd had a box that he had to seal and tie a ribbon and it was done. And then he was finished and he was ready and he let go. It was amazing. It was beautiful. Dr. Lidia Schapira: When I read your essay, I felt that that was the gift he gave you. You have the word ‘gift’ in the title. But it's such an amazing scene for a father to be able to do, sort of a review of his life while he's still living. Instead of leaving you a box with all of his memories, he basically showed you and gave you this loving and exhaustive, comprehensive demonstration of what his life had been about. Dr. Ilana Hellmann: Absolutely. Dr. Lidia Schapira: And in some ways, some of the dimensions that he touched were the professional dimensions that perhaps as a child or a young adult he would not have been able to access. But you saw how big he was. What an amazing thing. Did you and he ever talk about that? What it was that led him to do that? Or was that just something that happened and you sort of both understood and just walked on? Dr. Ilana Hellmann: It was beautiful and it's certainly a gift I've been left with. There was the gift he got and the gift I got. It was a little intense. Six hours of calls was exhausting. I remember when my husband came home and I told him, he immediately poured me a glass of wine. It was very, very difficult and it took me a long time to go through. I had no time to recover from one conversation to the next conversation. And he just kept going. He had very little breaks during the day. There were a lot of people he had to talk to, and he wanted to finish it today. He thought he was dying next week. That's not what happened. He never spoke about it again. And that was quite typical of him. He was like, “What's done is done. I've said what I had to say.” There were a lot of things that he said that I heard from the conversations that he had. And as you say, there were various gifts during the day that were told to other people but intended for me and for my younger brother who was not there at the time because he lived in England. But we never discussed it again. That was the way my father was. Dr. Lidia Schapira: You know when we, as physicians, tell patients who are sort of nearing the end of their life to say what they need to say to be prepared, this is exactly why, right? Because very soon after that, he had a seizure. He had brain metastasis. He might not have had the stamina or the ability to do what he did. So that is a very important lesson. I was incredibly moved by that scene, and I've probably read it a dozen times. You've probably thought about it a million times, but certainly this reader took a lot from that very beautifully described scene and so nicely told. So for the last few minutes, tell us a little bit about how this personal experience has impacted your delivery of news and your relationship with the patients. You start by telling us that often, as oncologists, we give bad news but then we just move on. But people live with this, people go home like this. How has that experience as a daughter impacted your delivery of news? Dr. Ilana Hellmann: Absolutely. There are a few parts of how it's influenced me. Somebody who read the article when I was writing it had said to me, "Wow, do all physicians have to go through these things to be able to identify with their patients or their family members?" Well, I hope not. It's a terrible thing to think of that each of us– On the other hand, there's no question that when you've been through something, you identify with the person in front of you if you know what they're talking about, you know what it's like to be a mother, you know what it's like to be a daughter. You know or you don't know what it's like to lose a parent or somebody else and the experiences that I had and I imagine anybody else have had with interactions with the medical community, with doctors, with the emergency room, with all sorts of things are things that influence the way I approach patients. So one of the things is true. I'm guilty of the fact that it didn't occur to me that I sit in my room, I see a patient and his daughter, his wife, his whatever, and I give them this news, and then I leave the wife to deal with him outside. Or the fact that when the oncologist said, “We haven't got curative treatment for you,” and I didn't hear anything else after that. Well, we know that when we tell patients something not good, there's often no point in carrying on the conversation and talking about treatment and side effects and whatever because they're not there anymore. And that's something that I remember very clearly from that. You can't go with the patient, you can't go home with them, you can't get in the... /episode/index/show/aoopodcast/id/28433408

Do You See Me?: A Candid Message from a Pharmacist to a Physician 10/24/2023

Do You See Me?: A Candid Message from a Pharmacist to a Physician Listen to ASCO’s Journal of Clinical Oncology essay, by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic. The essay is followed by an interview with McCullough and host Dr. Lidia Schapira. McCullough shares a pharmacist's perspective on experiencing a patient loss. TRANSCRIPT “Ope!” is the common Minnesotan exclamation when you bump into someone you did not see. As a pharmacist working in ambulatory care, I am more apt to hear it than most. I am a convenient presence in clinic life, available when needed, but I was trained to be as unobtrusive as the beige and bespeckled wallpaper that shrouds the hallway. After a decade, many still struggle to get my name correct. I hear a muttered thanks occasionally, but I know minds are fixated on the next patient, research question, grant deadline, or difficult conversation. I try to be accessible when you need me, from the minutiae of learning to order ondansetron as a new fellow to managing catastrophic relapses with multiorgan failure as a seasoned physician giving salvage chemotherapy. On nights, weekends, holidays, or when we are separated by a dozen time zones, I am here. We have navigated the uncomfortable waters of chemotherapy in hemodialysis, written clinical trials, obtained medication on compassionate use, and fought with insurance companies. I bear the brunt of your frustration when the electronic medical record feels cumbersome and ordering chemotherapy is just not like it used to be. Do you remember asking me to “just fix the system” in sheer exasperation but high-fiving me a few weeks later when you entered a chemotherapy plan without my assistance or corrections? I know that needing my help feels inefficient, impractical, and almost like a failure. You wish it was an easier, simpler, and more self-reliant system. But there are many times when you do not need me. When things go well and the bone marrow shows a complete response, the BCR::ABL1 is undetectable, or the positron emission tomography scan is clear. I am absent in those often fleetingly beautiful moments when you say “The cancer is in remission!” and you joyfully dismiss your patient. Did you forget that I had planned a visit? It is the desk staff who graciously tell me that my visit was presumably canceled. The patient has already left for the day. I am overjoyed for them, but it is bittersweet to be forgotten. Do you remember that gray and rainy afternoon in late October? I was in my office after your visit was done that difficult day. You left the examination room after an emotional and raw conversation about resuming therapy and asked for my help. You imparted the bad news and plan, but it was my job to carry out your instructions. I held their hand, sat with them through mutual tears, and paused many times for collective digestion of the information. I explained the differences between their last round of treatment and the new plan. I talked about topics that are difficult and uncomfortable: financial consequences, physical appearance changes, every side effect from hair loss to sepsis, and the need to stay in town and miss thanksgiving at home. It was well after 6 o’clock when I escorted them to admissions and we parted ways. The lights in our department were dim, and everyone was gone. You needed me. They needed me. Together, as a pharmacist and a physician, we spent weeks managing side effects for our patient, from nausea and vomiting to blood stream infections and transfusion dependence. I fought with insurance for drug approval, spent many weary hours in front of a fax machine obtaining charitable grants to cover copays, and plead with companies for patient assistance and free medication. We hopped from regimen to regimen, enrolled on clinical trials, and entertained the thought of compassionate use when precision medicine testing yielded a potential target. Weeks turned into months, and months turned into exhaustion. Despite all the awful things happening, our patient snuck treats into appointments and sent portal messages of their bucket list adventures, even if they became increasingly more home centric. Bad days started to outweigh the good as time marched forward. I was the first person to murmur the words comfort care as a potential next step just before we walked into the next visit. As a physician, you were angry at me for putting these words out into the universe and called me naïve. I do not think you intended to be hurtful, but I am reminded of my place. It was just shy of 3 weeks later before you and the patient made that mutual decision when chemotherapy was no longer an option, and visits with me ceased. My services were no longer viewed as necessary. I did not get to see our patient again, except for a couple of In Basket messages. I first read about their passing through an electronic medical record alert that I am entering a deceased patient’s chart while data collecting for a project. Their photo is now gray, and their demographics are a stark red. The chart feels hauntingly cold. The obituary was filled with healthy pictures and beautiful memories. Did you read it too? I missed the memorial service because no one told me. I closed the obituary and took the back roads home from work. It was a beautiful June day, and the sunshine felt warm and welcoming through my open windows. I wanted our patient to feel remembered, even if my remembrance was not particularly meaningful. Over the next few weeks, I embraced all the things we talked about in our visits. I listened to Earth, Wind, & Fire, their favorite band. I went to the driving range and exploded with laughter at my atrocious hooks and slices. I visited the local ice cream shop and indulged in mint chocolate chip ice cream that melted down my hand from a gigantic waffle cone. I sat on the dock and watched the sunset from the best vacation spot in the Midwest: a Minnesota lake. A year later, I smile when my playlist cycles through their favorite song, but the weariness of this rhythm grows heavier. As a physician, I hope you will see this side of my practice and the human being in this story, someone who meets patients where they are and agonizes alongside you at the loss of human life; someone who is crushed by the same weight of bureaucracy, red tape, archaic rules, and biases; someone who fights against the archetype that a pharmacist should be seen and not heard; and someone who will relentlessly remind you that pharmacists are brighter than an insurance claim or copay frustration. I hope someday you see the person connected to the In Basket, e-mail, pager, or phone as a team member and not a referee. I hope one day you simply see me, utterly human and some days utterly broken. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Kristen McCullough, a Hematology Clinical Pharmacy Specialist at Mayo Clinic in Rochester, Minnesota. In this episode, we will be discussing her Art of Oncology article, “Do You See Me?” At the time of this recording, our guest has no disclosures. Kristen, welcome to our podcast and thank you for joining us. Dr. Kristen McCullough: Thank you for having me. Dr. Lidia Schapira: It is our pleasure. I like to start these conversations by asking authors to tell us a little bit about their reading preferences. Do you have a book you'd like to recommend or something you're currently reading that's captivating your attention? Dr. Kristen McCullough: I just started a book called The Measure, which I think so far is excellent. It's about everybody in the world that is an adult receiving a box, and in the box is a string purported to be a measure of the length of your life and whether people choose to open the box or not open the box and what you do with that information. I think that is so closely tied to what we try to do in our day-to-day jobs, which is kind of this foretelling, future telling, and whether or not people want that information or don't want that information and what you do with it. So far, excellent, incredible read. Looking forward to kind of seeing how it unfolds. So that's what I’m reading if you can call that fun, a fun standpoint. Dr. Lidia Schapira: Oh, I hope it is fun. Dr. Kristen McCullough: A fun standpoint. I did just finish a Masters in Pharmacy, Business and Administration so I did a big chunk of reading that was more business-y and that was more focused on leadership and culture and that kind of thing. Dr. Lidia Schapira: How fascinating. Well, the book sounds very interesting. So it's an interesting segue to your essay. What made you write and then submit your work to be read by Oncologists? In other words, the sentiment is very clear and we'll talk about the message. But what was the process that you used that led you to want to share this work through Art of Oncology? Dr. Kristen McCullough: I've written for a very long time, much of it personal. Obviously, this job is very personal. It's hard not to be. And so I write for myself as a form of processing and I wrote this particular piece a while back simply as a means to help myself understand where my frustrations and sort of my difficulties with this job come from. And not that it's bad difficult, but it's just ongoing how do you get through some of the things that everybody deals with? The more that I read through it, it was a piece that I went back to time and again because the feelings continued to surface in a variety of different ways. I thought, am I the only person that feels this way? I discussed the sentiments, but not the article in specific with a couple of colleagues in pharmacy and they said, “Gosh, I feel this sentiment, who are we in the care team and where do we fall and what’s our place?” And I felt like it was an important time to share that as our field grows, as our capacity on a care team grows, to make sure that people understand who we are and what we can provide and that we are important to patients in a variety of capacities. Dr. Lidia Schapira: Well, you sure are. You're indispensable. So thinking about this, I totally appreciate the sentiment that pharmacists are very important members of the multidisciplinary and interdisciplinary cancer team. But what you, I think, showcase in this article is that sometimes as individuals, they may remain invisible or not as visible as they ought to be. So what I heard in this article, and please feel free to correct me, but this is my interpretation as a reader is this is sort of a letter of sorts to the oncologist, the trainee, the attending physician, the clinical investigator who partner with you in clinical care. And what you're saying is look at the emotional labor of our work and we are often not recognized and not brought into the team in the way that we ought to be. Did I get that right? Dr. Kristen McCullough: Yes. I think we are being brought into the fold more and I want to do service to the people that I work with. I mean, that change has happened very gradually. I've been with a very dedicated group in the past 10 years and that is improving and growing. You certainly have to demonstrate your capacity to provide services and be available. But sometimes the greater sentiment when we try to remember who a care team is, we're very good at saying that our care team is physicians and advanced practice providers and nurses. And it just doesn't seem to sift down to saying and pharmacists. And I don't think- it's never a conscious exclusion. It just doesn't seem to quite get there. And sometimes that can be hurtful when it's heard again and again and again. And I want people to remember that we make these tremendous connections with patients repeatedly. They are emotionally connected to us just as much as we are to them. And so when I lose patients, I feel that too, and I want to share that with my providers. I want to say, “Gosh, do you remember these incredible experiences we had and how funny this was? And do you remember their kids and their grandkids and the things that they brought to the table?” Because I was just as impacted by those experiences as I think that they were. Dr. Lidia Schapira: You also talk about the specific expertise that you bring. What struck me, for instance, was saying,”We gave chemo through hemodialysis together, the advocacy part. We're the ones left looking for the authorization or helping people with payment.” And then you talk about the human connection of, “We are the ones who are left explaining what the treatment actually will look like, what the side effects may be of that particular treatment.” All of which is incredibly important for the practice of oncology both in a community or an academic setting. And then you actually take us on. A bit more of a personal journey of what it felt like for you to learn that a patient had passed and how you found a way to honor that connection that you had and remember this patient. Can you tell us a little bit more about what that was like for you, this journey that you took with this particular patient, listening to the music they liked and eating an ice cream for them while you're watching the sunset on the lake? Dr. Kristen McCullough: Most importantly is I can read everything that happens to a patient in a hospital. I mean, we know every time they eat and sleep and sneeze. And so the more important part to me is if I'm going to send you home, particularly because our therapies are now far more outpatient based, is what are you doing at home that's good? And what are you not doing? What are you not participating in that you wish you could participate in? Because that's more telling to me of what my therapy is causing that's preventing you from participating or that you aren't doing because we told you that you couldn't. If my therapy causes some sensitivity and you hear that and you think, I can't go outside and how do I fix that? Because I want to make sure you go to grandkids’ baseball games and how do we accommodate those things? And so I try to listen for that, and what I get out of that is the human side of my patient, what pieces are important to them. And that's where you hear those things. What's your favorite music? What concerts are you going to go to? What are you looking forward to? If you could eat anything, what would you want to eat? What would make you feel better? How do I make that happen? If you could feel well enough to do anything, what's the most important thing for you to do? And I think that's what I remember most about patients is they wish they could get back on their motorcycle. They wish they could go fishing off the dock, they can't taste their favorite ice cream anymore, those kinds of things. And so that's what I remember. And I don't have a great way to memorialize patients. I can't go to funerals across the country. I mean, I can write cards and call families if it's appropriate, but I need a sense of closure in some of these instances. And so the best way for me to do that is to try and remember them through an activity that I think would make them chuckle, make them laugh, be like, “Oh, I knew she'd never get on a motorcycle. I knew she would never listen to that song from the 70s”, something like that. And so that's what I did for this particular patient, was think about the things that they did. And we laughed about try and process through that particular sentiment because it was just the only way I really knew how to when I wasn't part of the process for the rest of the team. When the death note comes through, and the nurse knows and the event practice providers know and the providers knows and the providers call the patient’s family and they send a card and I just didn’t know. So I had to kind of process in my own way and laugh. I mean I’m a terrible golfer, horrible. I went with my husband and I can’t hit a golf ball to save my life, and hooks and slices, and it was terrible and I laughed. It was good to laugh. It was good to imagine my patient thinking, “Oh, my goodness. She’s just atrocious.” Dr. Lidia Schapira: So I think this is the first time in the 20 plus years of Art of Oncology that we've presented a pharmacist, a clinical pharmacist point of view, and I'm so appreciative of that. We've been getting more and more stories from other members of the team who also felt somehow they weren't sufficiently recognized. And I wonder if you could tell our listeners a little bit about how you imagine that the care should be implemented to perhaps include clinical pharmacists in some of these activities that you say are sort of routinized by care teams but may actually leave important members out. Dr. Kristen McCullough: I think the hardest part for me is when patients are making a transition to comfort care or to hospice. Include your pharmacist as part of that because we either have connections in hospice care - I've got colleagues in hospice care - or at least let me help the patient make that move as well. Can I help pull off medications that they don't necessarily need to be on so they're not at home on statins and all sorts of other medications that they don't need? Can we help have that conversation to make it easier? Even if I'm not part of that, then at least let me know that the patient has made a transition because I think other care team members are aware. And if there's support that I can provide in that, I'm really happy to do that. And then if the patient passes away, it would be nice to know and be part of that information piece as well if that's possible. Dr. Lidia Schapira: You bring up some very valuable points that I think could benefit care and could certainly strengthen the team approach to patient care that is sort of increasingly being adopted in cancer care. One is that you have knowledge that could help patients across these transitions of care, and two is that your input doesn't end when active disease modifying therapies stop. You still have a lot to bring. And then it's the personal part of really feeling that you're integrated into the care team. And I think perhaps wearing your new MBA leader, you can introduce some changes in your system and then kind of lead the rest of the country in thinking about how to restructure the role of the pharmacist and the care team. Dr. Kristen McCullough: We can dream big, right? Dr. Lidia Schapira: That's what this is about. Dr. Kristen McCullough: Gosh, that would be ideal. And there was a really nice article in the Journal of Oncology Pharmacy Practice that talked about the state of pharmacy care across the country in oncology pharmacy. And I think we have pharmacists in a lot of incredible places, whether it's clinics, infusion centers, specialty care, inpatient, but we're short and we've got a long way to go. So any advocacy that we have from cancer centers and providers to help us and to recognize the value add, it will be incredibly beneficial because we can't advocate alone. We need support. Dr. Lidia Schapira: I know that there are lots of people who are reimagining cancer care and thinking about how technologies are going to also help us in the future. So I hope some of them are listening to this. I have one final question about this, and that is that from everything you're saying, pharmacists have a real connection with patients and provide advice and so on. What kind of communication skills training do pharmacists receive these days? Dr. Kristen McCullough: So you're asking somebody who went to pharmacy school... /episode/index/show/aoopodcast/id/28368458

Buenos Días: A Letter to My Patient’s Mother 10/10/2023

Buenos Días: A Letter to My Patient’s Mother Listen to ASCO’s Journal of Clinical Oncology essay, “” by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. The essay is followed by an interview with Ruiz and host Dr. Lidia Schapira. Ruiz shares a poignant story of a pediatric oncology immigrant family, social determinants of health and similarities to her own family’s experience. TRANSCRIPT Dear Gabriela, “Buenos dias,” we said to each other in the pediatric intensive care unit. It was July of my first year of fellowship, and I was meeting you for the first time. From the start, you were there as a family unit, you and your husband supporting your two sons and each other. You were not new to the health care system or to pediatric oncology. But this was the first time you encountered a Latina, Spanish-speaking oncologist. When you heard me speak Spanish, I saw the relief in your eyes, a relief that I had seen before with my previous Spanish-speaking families. An immediate rapport was struck, fortified by our common language, cultivating an environment of trust. It stirred memories of the numerous instances when I accompanied my chronically ill grandfather to his medical appointments, often assuming the role of a medical interpreter for his care team and yearning for such a connection. I learned that your son had recently completed therapy for his first cancer, and because he (and your family) has a genetic predisposition to cancer, he required surveillance scans. That summer, his whole-body magnetic resonance imaging picked up an asymptomatic brain tumor. So, our lives became intertwined and I became your son’s pediatric oncology fellow. I would never imagine the events that would follow in the next 4 years. I couldn’t help but notice the similarities between our families. My family also immigrated from Mexico to the United States in search of better economic opportunities. They too primarily spoke Spanish and worked manual labor jobs earning minimum wage. They too had a genetic predisposition to a chronic disease (although not cancer), and because of this, they too saw multiple family members die at a young age. You told me about your brother who died in his 20s from cancer and how your father had a similar fate in his early 50s. Back then you didn’t know that your family had a cancer predisposition. Perhaps the local hospital in Mexico where your family was treated didn’t have the genetic tests, or maybe your family could not afford such tests. I never asked you. My maternal great grandfather also didn’t know why he had end-stage renal disease at a young age in rural Mexico. Even if the local hospital did have the tests, my family could not afford them. Just like your family, it was here in the United States that my family uncovered our own genetic predisposition, but, in our case, it was to kidney disease. Sadly, knowing the root cause did not prevent early deaths. You told me about the events that led to your son’s first cancer diagnosis. He was having leg pain and was about to turn 2 years old. You went to his pediatrician for a sick visit and routine vaccines. His leg pain worsened after the vaccines. Scans were ordered and unfortunately showed a tumor. You shared how in your mind the vaccines and the cancer were linked and how you worried about future vaccines. I listened to your worries and explained that vaccines did not cause his cancer. This reminded me of conversations I had with my own mother and aunts who would ask me medical questions: was it normal for a healthy young adult to have hypertension? What are kidney cysts? These early family experiences ingrained in me the importance of communicating in plain language and the responsibility we have as physicians of educating our patients and their families. I would later learn in my medical training that not all physicians learned these communication skills or prioritized them. Your worst nightmare came true when we found his second tumor, this time in his brain. You and your family prayed that it was a benign tumor relying on your deep faith in God. So, when I broke the news that it was a malignant tumor, it was far from a buen diıa for your family. Your son had a quick postoperative recovery, and we made plans that I would see him in clinic the following week to discuss his treatment plan. “Buenos dias,” you said to me in clinic. You were there again as a family unit, both you and your two boys. We discussed the treatment plan in Spanish, and you asked thoughtful questions about the chemotherapies he would receive. I was impressed that you remembered side effects of medications from his previous treatment and that you learned to use the patient portal on your phone. I also noticed how you had mastered enough English to communicate simple things with the nurse or with the physical therapist, but you preferred to speak to me in Spanish. You son was well plugged into our large pediatric academic medical center and all the support that came with it. Our nurse navigators helped you coordinate multispecialty appointments. But I was acutely aware of what another subspeciality appointment meant: another day off work for your husband without pay, or if he did go to work, it meant you had to figure out transportation as you did not know how to drive, challenges my own family members experienced. So, we started outpatient treatment, and I saw you on a weekly basis. Your son tolerated his therapy exceptionally well and continued to have many buenos dias that you were grateful for. In between updating me on how your son was doing at home, your husband would lovingly tease you and make light of what I am sure was a very stressful situation. Your older son would also come to the appointments, and at one point, we ended up talking about school and going to college. I shared with him that I was the first one in my family to become a doctor and how important it was to work hard in school now, so later on, he could apply for scholarships, and one day, he could be the first in his family to go to college. I told him, “If I can do it, you can do it too.” I could see his excitement in his eyes. At the end of clinic, you ended with “Muchas gracias doctora.” Six months later, your son completed his therapy and began surveillance scans. You shared with me your anxieties around these scans. I tried my best to normalize your feelings. Thankfully, your son’s scans continued to be negative for tumors and he continued to have good days. Every so often I would remind you about the importance of your own surveillance scans and you would nod your head. This was not new to me as I had taken on the role of reminding my siblings and cousins to schedule their annual health visits and have screening tests for kidney disease given our family history. A year and a half went by, and then during one of our routine visits, you told me that you were not doing well and that, in fact, you were having malos dias. I asked you what was going on, and you told me how you had gone to your local community hospital for abdominal pain and had been diagnosed with stage 4 pancreatic cancer. I was shocked. After updating me on your son and how well he was doing, you asked me a question that stayed with me, a question that my own family members had asked me before: “What is the prognosis for this?” You caught me off guard. I turned the question back to you and asked you what your oncologist had told you. You said they hadn’t given you numbers and that you understood that a higher stage was bad. You looked at me with pleading eyes. I told you how my specialty was children with cancer and that I did not know the numbers for adult cancers. I encouraged you to talk with your oncologist more about this. Although this was during the first year of the pandemic, I gave you a hug. Although I didn’t say it out loud, we both knew this was not going to end well. I called you the following week to check on you. I asked if you wanted my help to get a second opinion at the academic adult hospital next door. You explained that you were about to start therapy at your community hospital and that since you didn’t have health insurance because of your undocumented status, you didn’t want to pursue a second opinion at this time. I told you that if you changed your mind, I would be happy to help. I didn’t hear from you for several weeks, and then I got a notification that your son had multiple emergency department (ED) visits. In his electronic medical record, I read that it was your husband who had brought him in for vomiting. I read in a note that your husband had told the ED team that you had recently died. I was in shock. I cried for your sons who were left without a mother and for your husband who would now have to learn to navigate the medical system by himself. Two weeks later, I saw your sons and your husband for what I thought was going to be a routine visit. I was shocked when your husband told me that child protective services had been called on them by the hospital social worker. He told me the story that instigated this call. Your older son, now a teen, was struggling to deal with your death. One afternoon, your husband asked him to take out the trash and your son had an emotional outburst and said some disrespectful things to your husband. Your husband reacted quickly and flicked your son’s cheek. This story was shared by your older son to the social worker who made the report. My shock turned into anger, and I did my best to stay composed in front of him and your sons. I understood your husband’s reaction, as respect to parents is a core value in Mexican culture.1 I wondered if the social worker understood this. Before I left the examination room, I told your husband that the medical system can be biased and warned him to be careful and know his rights. For my own extended family had experience with child protective services, several years back my young aunt, a first-time mom, lost custody of my infant cousin after an unwitnessed fall that resulted in brain injury. I wondered if the outcomes would have been different if she was white, wealthy, and well-educated. I would later learn in my medical education the disproportionality in reporting by race and ethnicity.2 Once back in the work room, I cried sad and angry tears. Sad that your husband had to go through this process and the added stress after the recent trauma of your death. Angry that I, the physician with the longest continuity with your family, the physician who spoke your primary language and understood your culture, was not notified before the reporting. Angry also that this system was yet again failing our most vulnerable populations. Knowing that when resources are limited, it is low-income, non–English-speaking families that usually get neglected first. Child protective services investigated and concluded that no major action was warranted. Thankfully, your son’s surveillance scans continued to be negative. In the next couple of months, your husband learned to navigate the clinics, the ED, and the hospital. Unfortunately, language barriers made this navigation stressful, and more than once, miscommunication with ED doctors increased his anxiety about the possibility of recurrence for your son. I reiterated to him to call our clinic with any question, saying that I’d rather we answer his questions instead of having him worry weeks on end at home. Several more months passed, and your son was due for surveillance scans again. I got a call from the social worker that day notifying me that your son came with his uncle to his scan appointments because your husband was admitted in the hospital and that there was concern for cancer. This was completely unexpected as your husband was not the one with the family history of cancer. I called your husband later that day to give him the results of your son’s scans (negative for recurrence and negative for new tumors) and to ask about his health. He told me of the weight loss and abdominal pain. He went to the same community hospital where you had gone and had scans that showed a mass in the colon. He told me he was about to be discharged and insisted on keeping your son’s clinic appointment with me the following week as he wanted his son’s g-tube checked. At the time, it seemed strange tome that he was hyper-focused on the g-tube instead of focusing on his own health, but in retrospect, I think the g-tube was something he could control during a chaotic time. I saw your two boys and your husband in the clinic the following week. I was shocked to see how your husband looked compared with our last visit 6 months ago. He was in a wheelchair, had lost a significant amount of weight, and looked like he had aged 10 years. He told me how his son, my patient, continued to do well. He was worried the g-tube was irritating him more. We ended up exchanging the size as he had outgrown the previous one. Then, he told me about his health, that the biopsy results were still pending, and that he understood the mass was localized. He shared how the preliminary diagnosis of cancer was disclosed to him: the doctor came in the room and abruptly said it was cancer in front of your older son without a warning. My heart broke when I heard this. Your older son lost you to cancer less than a year ago, saw his brother undergo treatment for two separate cancers, and saw his cousin lose his fight to cancer. He didn’t deserve this. I held back tears, and I apologized for the fact that his family had to experience this poor disclosure. I worried about the care he was receiving at the community hospital, knowing cancer is the leading cause of death for Latinos in the United States and that social determinants of health have a role in this.3 I knew the odds were stacked against him. I reminded him that he has rights, including having an interpreter when talking to the medical team. Then, he said something that took me by surprise, “I need to get my affairs in order.” I felt this was premature and also felt helpless as I desperately wanted to help your family. I told him he didn’t know all the information yet, and if the cancer is localized, then the chance of cure is higher. He nodded his head. I asked if we could provide assistance in any way, such as coverage for transportation, but he declined this offer. At the end of the visit, he said “Muchas gracias doctora.” At home, I cried for your family and questioned how one family could be so unlucky. I called your husband on a weekly basis for the next 2 weeks to check on him. I then went on service and was too busy to call, but the following week, I got an e-mail from the oncology psychologist stating your son and your husband missed a telehealth visit, adding no one answered the phone when she called. I replied that I had not spoken to your husband in over a week. A couple of days later, I got a call from your son’s social worker, one of the Spanish interpreters had found out via Facebook that your husband had died. Almost a year after you died. I cried. I went to your husband’s funeral. I cried for your boys who lost both parents in the span of a year. It was comforting to see that you had a lot of friends in the community who cared about your family. It was also comforting to hear that your cousin agreed to take in the boys. Gabriela, you and your husband did a phenomenal job raising your boys especially with the two cancer diagnoses of your younger son. Your son, my patient, was always happy in clinic, and that spoke volumes to the type of environment you created for him at home. Despite the complexity of navigating a large academic medical center, you did it with such poise. You were an extraordinary mother. Was it fate that our lives became intertwined so early in my fellowship training? Latino physicians in general are underrepresented in medicine,4 and the same is true for Latino oncologists in academic medicine.5 So, it was an honor and privilege for me to be your son’s doctora. Throughout our encounters, I thought about how I would want my own extended family to be treated by their medical team, and I did my best to communicate, educate, and advocate for your son and your family. Your family reminded me of barriers low-income, immigrant, Spanish-speaking families face as they navigate the Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. In this episode, we will be discussing her Art of Oncology article "Buenos Dias: A Letter to My Patient's Mother." At the time of this recording, our guest has no disclosures. Jenny, welcome to our podcast and thank you for joining us. Dr. Jenny Ruiz: Thank you so much for having me here. It's truly a privilege. Dr. Lidia Schapira: It's our pleasure. So, Jenny, I like to start by asking our authors what it is that they're reading now. Dr. Jenny Ruiz: Yeah. So I'm currently reading Lean In by Sheryl Sandberg as I'm new to a transition to a new institution. Dr. Lidia Schapira: Doesn't sound like a lot of fun, but I hope that it's useful. So let's talk a little bit about your work. What made you choose a career in pediatric oncology? Dr. Jenny Ruiz: I think my decision to go into medicine has stemmed from my extended family's interaction with the medical field. At the age of 18, I decided to be premed because I had an encounter with my grandfather, taking him to his clinic appointments after his kidney transplant and being asked by the doctor to interpret for him. I was at that time 17 or 18, and I thought it was a very interesting question that they were asking me. I didn't really think my grandfather would be telling me, his granddaughter, all his personal medical symptoms to then tell the doctor. Dr. Lidia Schapira: It's a huge responsibility that's often, I’m going to say, inflicted on children, and especially in this case, with your grandfather. You talk very candidly and openly about being in a family where there was a genetic susceptibility to disease other than cancer and your solidarity with your patient and their family for being an immigrant community and having this. Tell us a little bit about the years that you lived with the story. You cared for this child for many years before sharing the story so openly. Tell us about that. Dr. Jenny Ruiz: Yeah. I met this family my first year in the first month of my fellowship four years ago. At the beginning, he was doing so well. I mean, it was unfortunate he had a second diagnosis of cancer, but he did exceptionally well in the outpatient setting, really not having any admissions for all of that. And it was just beautiful to have that relationship with the parents, being able to speak the same language, being able to understand the culture, and seeing them kind of go through this all over again and seeing a little boy grow up. And it wasn't really until the last two years that a lot of the incidents that I describe in the story started happening. And so it definitely was a lot to kind of process it with the family as they themselves were going through all the trauma of having the parents diagnosed with cancer. And I think it definitely did take me a while to even after all of that, to put it down in the story and writing it down. I found myself oftentimes kind of writing a little part of the story and having to pause because of all the emotions coming back. And so I think I did that a couple of times across the country, across... /episode/index/show/aoopodcast/id/28294325

Playing by Eye: Using Music as a Parallel to Clinical Oncology 09/26/2023

Playing by Eye: Using Music as a Parallel to Clinical Oncology Listen to ASCO’s Journal of Clinical Oncology essay, “Playing by Eye: Using Music as a Parallel to Clinical Oncology,” by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. The essay is followed by an interview with Preti and host Dr. Lidia Schapira. Preti discusses the parallels in playing music by ear and clinical oncology encounters. TRANSCRIPT Narrator: , by Beatrice Preti, MD The Yamaha keyboard in our cancer center is strategically placed. It rests in the center of the tall, lofty atrium, an open space that allows sound to travel and echo, creating an effect one might expect from a concert hall or a large-capacity theater. From their position, keyboard players cannot fully appreciate the music they create. In the middle of the atrium, any sound is flat, shallow, and short-lived. But, further away, and on the upper levels of the center, one can hear the music echo as the walls seem to vibrate with reflected sound. It is enough to pause one’s step to listen, perhaps recalling some half-buried memory or latent emotion a song elicits. But on center stage, beneath the streetlamp-shaped light that feels all too much like a spotlight, the pressure is on. The keyboard faces half of the waiting room and the lobby Tim Horton’s, which means, as one plays, one can see reactions to the music—including winces when fingers slip! Faces turn solemn and reflective during slower songs; patients, relatives, and health care workers alike dance and clap to faster-paced, popular tunes. Feedback and commentary are steady—about the music, the song choices, and, of course, song requests. I find song requests challenging; a combination of performance anxiety and only moderate competence on the keyboard affects the quality of the music that can be produced on demand, yet does nothing to eliminate the desire to fulfill a patient’s request. Indeed, the request is usually the simplest part: Do you know Bette Middler’s “The Rose”? A simple tune, one of my mother’s favorites. But I haven’t played it in years, since high school, actually, and the once-familiar notes now elude me. But the empty space after a request lingers awkwardly, and the hopeful anticipation from the patient and their family squeezes my heart like a vise. To break the pressure, I test out a few chords. Dozens of pairs of eyes stare down at me from all over the building. My hands start to seize. To freeze. Panicking, I hit a note. Seems okay. Then another one. And a chord. …that was supposed to be a chord. The eyes pin me down. I see disappointment. I hear whispers. They must be about me, that it’s not as good as it sounded before, that I could do with some practice. I try again. Better. Another note. A broken chord. An octave. A melody emerges. Someone smiles. I think. Sweat soaks my shirt. Are we at the chorus yet? How much longer is there left in this song? Singing starts somewhere to my right, also a little out of tune, and it gives me the courage to continue on, although the experience is nerve-wracking enough to make me dread song requests—despite the apparent joy they bring. The solution, once considered, seems simple: practice playing by ear. It is impossible to predict who might be walking by on any particular day, but having the skills to reply to a request with at least a few bars of a beloved tune, thus brightening a face (and a day!), seems well worth the effort. Playing by ear, like most learnt skills, is more manageable when broken down into steps. The first step (or requirement, really) is a general familiarity with the song and a plan for how to approach it (fast or slow? Block chords or broken? Major or minor key?). Once this is determined, one begins with the first verse. The first time is usually rocky, and the mistakes are obvious. But, with luck, a familiar melody starts to emerge by the chorus. The music grows louder with confidence, and gauging audience reactions helps musicians see how close they are to the target tune and where they need to adjust. Playing by ear—or, perhaps, playing by eye, as it is the reactions which truly guide the musician—is an amazing skill, one which interestingly spills into more domains than initially anticipated. After several ear-practice sessions, I noticed a strange pattern in my clinics—the steps of a clinic encounter mirrored playing a song by ear! Prior to each encounter, I would consider the diagnosis and treatment plan, as well as a vague approach of how to handle the encounter, given the goal of the visit and the patient’s journey thus far. Once inside the room, however, I began to alter this plan based on the patient’s (and family’s) responses, taking cues both verbally and nonverbally. Sometimes my words, tone, or gestures fell flat, and redirection was needed. Sometimes an unexpected reaction told me I’d just made a mistake, and I backtracked, trying again, paying closer attention to the reactions to ensure the second try was better. But, gradually, we (usually!) reached a steady state and manage to complete the visit on a strong note. Naturally, then, the next step would be to practice clinical encounters using these same steps, trying to take my clinical skills to the next level. Unlike a song, however, a clinic visit’s stakes are higher—especially in the high-emotion field of oncology—and striking even a single mistimed chord could lead to disaster. I start small: awareness, noticing reactions I didn’t before. There’s the fullness in an eye before tears fall, the pallor of a clenched fists’ knuckles, the subtle tremor of a shaking leg. I learn to call them out by name, ask about them: grief, frustration, fear. There is a pause, an empty space after such a direct question. A wide-eyed stare. My heart pounds, awaiting the verdict. Was my diagnosis correct? A misjudgment breaks rapport, but accuracy is rewarded with surprise, and opening up. Even family members look surprised, as details are elicited that weren’t before. There is no singing along—cancer is not a beloved showtune. But as my skills grow, I find that not only are patients and families less tense during encounters—but I am, as well. I develop faith in my skills to read the room and alter my direction based on what I see. And, perhaps, the biggest clue that one has succeeded—on both fronts—is the heartfelt thank you that follows the encounter. This parallel has made me realize that every interaction between two people, just like every song, has its own beat. Its own melody. Is this fast or slow? Calm or anxious? Is this a happy exchange, or a sad one? The dynamics of the encounter influence the melody, and a misstep or misplaced word, like a note, can lead to dissonance. However, by listening to the song of the encounter and adjusting as appropriate, an astute individual can actually improve the interaction, maximizing the potential of the encounter, and allowing for a strong conclusion to the visit. It isn’t easy work, to be sure, and, sometimes, the impact of the song can be hard to appreciate, especially within the confines of a four-walled clinic room. However, like the keyboard music in the atrium, the echoes resulting from one clinic encounter have the potential to reach far-reaching corners, echoing in ways previously unimagined, and lingering far longer than when the song ends. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. In this episode, we will be discussing her Art of Oncology article, “Playing by Eye: Using Music as a Parallel to Clinical Oncology.” At the time of this recording, our guest has no disclosures. Beatrice, welcome to our podcast, and thank you for joining us. Dr. Beatrice Preti: Thank you, Lidia. It's a pleasure to be here. Dr. Lidia Schapira: So I usually start by asking our authors to tell me what they're reading, but in your case, I'd love to ask you a little bit about perhaps what you're listening to or your favorite musical pieces. Dr. Beatrice Preti: Yes, absolutely. Well, I do love music. I play three instruments myself, so I have several YouTube playlists that, as I hear a song, I'll add different ones to. So one of them is retro tunes, like '80s, '70s hits that I know mostly from my parents. And then I have Broadway hits, musical hits because I love musicals and singing. And then I have a random one that has a lot of Taylor Swift, much to the chagrin of my colleagues because I will play that in the cancer center, not around patients, but my colleagues. Dr. Lidia Schapira: That's lovely. Well, I think Taylor Swift is a global phenomenon, is all I can tell you. Has music always been a part of your life? Dr. Beatrice Preti: Yes, very much so. I think- I started piano lessons formally when I was seven. Then I taught myself guitar as a teenager. And then once I hit medical residency, actually, my treat to myself was to start teaching myself violin. And I had the opportunity to take some lessons for a few years as well, which was absolutely lovely. But growing up, my mother loves music as well. She was a Sarah Brightman fan, a British singer. And we used to have her playing and my mother would sing. So I know all of Sarah Brightman's songs from the time I was a very early child, trying to pick those out on the piano as a young child as well. Dr. Lidia Schapira: So let's talk a little bit about how you bring that wonderful part of your life into your work as a physician and as an oncologist. Do you ever sing with or to patients? Do you talk about your love of music? Do you play music during your consultations? I'm curious all of a sudden. Dr. Beatrice Preti: Yes, absolutely. So I guess one way that I do bring it in is I have a little violin pin that I wear on the lapel of my white coat. It's a conversation point with many patients because the way I approach oncology is really to try to bring in a human aspect and get to know patients, get to know what they like, who's at home with them, what are their lives like outside the cancer center. And oftentimes people who are musically inclined will point to it, and it's a conversation starter, which can actually be quite relevant when we're talking about treatment decisions and such. And then I have the opportunity as well to play and go down in a cancer center. And, yeah, patients will sing and I will sing along with them as well. Dr. Lidia Schapira: So you speak of this with so much joy. Tell me a little bit about this piano that I imagine from your description, located in the center of a large atrium in a cancer center, and people just walk by and informally connect with you and they ask you to play, when do you play and how long do you play? When did it start? Dr. Beatrice Preti: When I started off in oncology, I was extremely shy. I still am. And one of my mentors, a cellist, who plays the cello found out about my musical inclinations and said, "Well, we need to get a piano in the cancer center lobby. Essentially, I can get Beatrice down there and start getting her more comfortable in front of groups, in front of people, in front of patients." That really, I think, was the rationale, but maybe on paper it's more to have something nice for the patients to listen to. And he actually got a piano donated or, sorry, an electric keyboard donated to the cancer center. We did have a piano a number of years ago, but unfortunately it was too loud with the acoustics of the center, so we needed something with volume control. There's actually a lot of keyboard, a lot of black keyboard that's down there now. And the first time I played was probably two, two and a half years ago now with my mentor, with the cello. I was very, very nervous. All these people were staring at you and all these people were looking at you. And I actually had a bit of a meltdown just before I thought, "Well, I can't do this. There's no way I can do this." But he coached me through it and it was the first of many things that he coached me through related to oncology, relating to overcoming your fears to try to help other people. And that's really how that started. And eventually I got brave enough to go down and play on my own and chat with the people down there. Dr. Lidia Schapira: That's a beautiful story, both of service and of mentorship. And to see both of these things come together. As you say, your mentor probably had two things in mind: helping the community of patients that you serve and also helping you build confidence, as you say. So talk a little bit about this confidence and this lovely metaphor, in a way. You talk about finding the right tempo or finding the right music to play to please somebody or to help them relax, bring them joy. And then you draw some parallels to how you use communication in the consultation room, taking your cues from people and knowing perhaps when to slow down or when to change the tone or the voice. Talk a little bit about that. It's fascinating to me. Dr. Beatrice Preti: Well, I think one of the things I struggle with in oncology, and I certainly know I'm not the only one, is that sometimes you feel very helpless. Because we do have wonderful drugs, we have wonderful therapies, I'm a medical oncologist, so drug therapies, but they don't always work. And sometimes, despite your best efforts, despite the best that medicine has to offer, you feel very helpless, and the outcome is not what you or the patient wants. So trying to find something that you can offer and that you can give, that's more than just a treatment or more than just a drug, that's essentially giving of yourself, what can I, as a person, offer to a patient? And I guess superficially, the music itself is something that you can offer. To give people even just a few moments where they can escape the cancer center and they can listen to something. And when I'm down there, I'll play a lot of these tunes and these kinds of things, where maybe it triggers a memory that somebody might have of a time and place that's quite different than the one they’re in right now. But also, it helps evoke that human aspect that I think we touched earlier. And as you say, Lidia, and as I say in my piece, about trying to match the tempo, trying to match the rhythm, because conversations also have tempos and rhythms. Human interactions have variations and they have moods. And it's also practice in a way. If you can connect to someone through music, perhaps you can connect to your words as well. Perhaps you can connect with your actions as well. Much the same sort of strategy. Dr. Lidia Schapira: And you bring up a very important point, I think, and that's to play, as you say, you start by saying ‘by ear’, maybe no, but by eye because basically you're also taking in the visual cues that are coming from your audience. In this particular case, it's you're playing in the lobby, but in a consultation room from the patient and family and everybody who is there, and being very quick to take that into account and to redirect or make a change. And when you talk about that in the music, it's so easy to understand. And when you talk about that in the consultation room, that's such a skill. That's sort of where the art and the skill seem to go together. Can you say a little bit more about that or share with us some time or some anecdote where that really worked for you? Dr. Beatrice Preti: Honestly, I think the first thing that comes to mind is times when it didn't work. Sometimes, especially as a more junior learner, you only realize that the patient encounter isn't going well when it's really not going well. You really miss those early cues that a patient is telling you. That they're in distress, that they're not happy with what they're hearing. And it was, again with the same mentor observing me through several patient encounters and really deciphering it, saying, “Well, this is where– What did you think when they said this? And did you notice this look?” And no, I didn't notice this look. Well, he did, and maybe you can pay more attention. And I think it was actually when I was playing music that I really started to make those connections because down there, I'm playing by eye. I'm trying to watch this patient or this person - half the time, I don't know who they are - to see am I playing the tune that they want, and is it recognizable enough? Does it sound okay? Is it transporting them to that place where they're hoping to be and then bringing that into the clinic room and saying, “Okay, this is actually working. I can look at this person and I can figure out how this is going and try and adjust or redirect to really try and make this encounter the most valuable it can be for them and help them get out from what they need to get out .” Dr. Lidia Schapira: So Beatrice, what I'm hearing is an enormous sense of commitment to your patients. It's absolutely lovely. But I wonder if I can ask you a little bit about the flip side of that, and that is to reflect a little on perhaps how playing and sharing music reduces your stress or increases your sense of being well and being yourself and being more confident. Can you talk a little bit about that? Dr. Beatrice Preti: The bottom line is that when a patient encounter goes well, you also feel better because if it's not going well and people are upset, you will also be upset. So, again, very superficially, that's a good end goal to have. Dr. Lidia Schapira: That's right. Dr. Beatrice Preti: Music itself is very relaxing for me. Maybe when you're a small child and you have to play the exam pieces or you have to play what the teacher says, or what your parents say, it's not quite as much fun trying to learn everything. But now I'm at the point where if I hear a song or I see a song, I'd like to play the song, I can just do it. So it's very lovely that way. Of course, I have all my instruments at home, so even if there's a song that perhaps is not cancer center appropriate, I can just play it at home. I hope the neighbors don't complain and it's fine, but it's really fantastic, especially singing. So being able to sing with two of my instruments at least, I don't know. I'm sure there's violinists who sing. I'm not one of them. I don't have those skills. But with the other two, just go down into the basement. I have a microphone, I have a sound system and just get it all out. Get out all your frustrations, all the things that happened that day. It's very cathartic. It's a good release Dr. Lidia Schapira: Over the years, we've had a few essays in Art of Oncology that talk about music and how important music is for that particular author. And it's just so lovely to hear. So I want to end by asking you a very simple question, and that is, what is the song that is most often requested these days? Dr. Beatrice Preti: Oh, that's hard. That's hard. It really depends who it is, because I've played to different generations. I have a rendition of “Zombie” by The Cranberries that a lot of people seem to like, “Losing My Religion.” But these days it's “Flowers” by Miley Cyrus, actually, I would say. Everybody seems to know that song. Dr. Lidia Schapira: Well, it makes me feel very old because I don't. I was hoping you would say something about these ‘70s or I'll be more comfortable with ‘80s or even with Taylor Swift, but I'll have to go listen now. So thank you. I want to give you the last word in the podcast. What is the central theme of your message as an author and as somebody who's sort of... /episode/index/show/aoopodcast/id/28132166

When the Future Is Not Now: With Optimism Comes Hope 08/08/2023

When the Future Is Not Now: With Optimism Comes Hope Listen to ASCO’s Journal of Clinical Oncology essay, “When the Future Is Not Now,” by Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin. The essay is followed by an interview with Retseck and host Dr. Lidia Schapira. Drawing on cultural history, Retseck explores a dying cancer patient’s persistent optimism. TRANSCRIPT Narrator: The most optimistic patient I have ever met died a few years ago of lung cancer. From the beginning, Mr L was confident that he would do well, enthusiastically telling me, “I’ll do great!” As chemoradiation for his stage III lung cancer commenced, he did do well. Until he got COVID. And then reacted to the chemotherapy. And then was admitted with pneumonia. And then c. difficile diarrhea. And then c. diff again. But whenever we checked in with him, he reported, “I’m doing great!” He could not wait to return to treatment, informing me, “We’re going to lick this, Doc!” Of course I asked him if he wanted to know prognosis, and of course he said no, because he was going to do great. He trusted that his radiation oncologist and I would be giving him the absolute best treatment for his cancer, and we did. In the end, weak and worn out and in pain, with cancer in his lungs and lymph nodes and liver and even growing through his skin, he knew he was not doing great. But he remained thankful, because we had done our best for him. Our best just wasn’t enough. While it can overlap with hope, optimism involves a general expectation of a good future, whereas hope is a specific desire or wish for a positive outcome. Research has shown that for patients with cancer, maintaining optimism or hope can lead to better quality of life.1,2 As an oncologist, I am in favor of anything that helps my patients live longer and better, but sometimes I also wonder if there is any real cause for optimism, because the odds of living at all with advanced cancer are just so bad. From 2013 to 2019, the 5-year relative survival rate for people with stage III lung cancer was 28%. For stage IV disease, it was just 7%.3 Immunotherapy and targeted treatments have improved outcomes somewhat, but the chances for most patients of living more than a couple of years after being diagnosed remain low. Even with our best treatments, there seems to be more reason for despair than optimism. Yet here was my patient and his persistent optimism, his faith in treatment to give him a good future, and my hope that he was right, even when I knew he was probably wrong. What drives this belief in a good future, a better future, in the face of such a rotten present? Optimism as a word and a philosophy emerged in the 18th century in the work of German thinker Gottfried Wilhelm Leibniz. As it was for my patient, optimism served as a way to negotiate the problem of human suffering. Attempting to explain how a perfect, omniscient, and loving God could allow so much suffering, imperfection, and evil, Leibniz argued that God has already considered all possibilities and that this world is the best of all possible worlds. Leibniz did not mean that this world is some sort of a utopia; rather, the God-given freedom to choose to do good or evil, and even our vulnerable aging bodies, are good in themselves.4 If my patient were Leibniz, his optimism about his cancer could be explained by an acceptance that everything happens for a reason, his suffering somehow part of a larger whole, selected by God as the best possible way to the greatest good. But while Mr L did take his diagnosis and various complications in stride, a belief that it was all for the best did not seem to be at the core of his optimism. Nor, in the end, did he reject his optimism, as the French philosopher Voltaire would have him do. Voltaire famously skewered Leibniz’s optimism in his 1759 novel Candide, in which Candide, having been raised on Leibniz’ philosophy, is kicked out into the cold, cruel world, where not just he, but everyone around him, suffers horribly and unremittingly, such that at one point, he cries, “If this is the best of all possible worlds, what must the others be like?” Whatever Voltaire’s satire in favor of empirical knowledge and reason did to Leibniz’s philosophy, it did not kill optimism itself. Scientific optimism, in the form of progressivism, the idea that science and our future could only get better and better, flourished in the nineteenth century. Certainly, life for many did improve with scientific advancements in everything from medicine to telephones to airplanes. With this brightness, though, came a deepening shadow, a tension heightened by the experience of chemical warfare and shellshock in World War I. Instead of better living through chemistry, science provided the means for horrifically more efficient death. The assimilation of science to the service of evil soon culminated in the vile spread of eugenics, racism, and mass murder. Like Candide, pretty much everyone in the 21st century must be wondering if we do not live in the worst of all possible worlds. And yet, when it came down to it, what else could my patient hold onto if not optimism that science would save his life? As I continued to reflect on Mr L’s response to his illness, I realized that I had unconsciously already stumbled on Mr L’s type of optimism, or rather its popular culture archetype. One day, when he was getting his chemotherapy in an isolation room due to his recent COVID infection, I passed by the glass window. I waved, and he waved back. Then, I put my hand up to the glass, fingers separated in the Vulcan salute. He laughed, and waved again. The scene, for non-Star Trek fans, is from the movie The Wrath of Khan. The Vulcan, Spock, too is in glass-walled isolation, dying of radiation poisoning, after having sacrificed himself to save the ship and its crew. He and Captain Kirk connect through the glass with the Vulcan salute, as Spock tells his friend, “Live long, and prosper.” Later, Mr L told me that he had never been able to do the Vulcan salute and that he was not especially a Star Trek fan, though he had watched it years ago with his kids. But he loved this private joke we had, flashing this sign to me whenever we met, laughing when he could not make his fingers part properly. Star Trek epitomizes optimism for the future, arising as it did in the context of the Space Race to the Moon. Set in the 23rd century, Star Trek reveals that humans have finally learned the error of their ways: nuclear warfare, racism, and poverty are all things of the past, as are most diseases, ameliorated by the advance of science. In the world of Star Trek, medicine is, if not easy, then at least almost always successful. In one episode, the ship’s doctor, McCoy, and Spock whip up an antidote to a deadly aging virus. Later, slung back to 1980s San Francisco in Star Trek: Voyage Home, McCoy, aghast at “medieval” 20th-century medicine, gives an elderly woman on dialysis a pill that allows her to grow a new kidney. In the world of Star Trek, cancer, of course, has been cured long ago. My patient’s optimism is realized here, in a future that regards 20th-century science as “hardly far ahead of stone knives and bear skins,” as Spock complains in another episode. Star Trek remains popular because, in spite of everything, there endures a deep desire for, if not the best, then at least a better possible world. I’m an oncologist, not a Vulcan, and when it became clear that Mr L was not going to “live long and prosper,” I was frustrated and disappointed. His optimism could no longer sustain my hope. We were not in the idealized world of Star Trek, and I could not heal him with science and technology. Whatever the future of medicine might hold, our best possible treatments were still just “stone knives and bearskins.” Optimism, whether his, mine, or that of science, would not save him. The only optimism that seemed warranted was not for the future, but in the future. At the family meeting to discuss hospice, Mr L sat in a wheelchair, weak and thin, on oxygen, wrapped in a warm blanket. As his family slowly came to realize that their time with him and all that he was to them—father, husband, bedrock—was moving into the past, he seemed to shift from a focus on the future to the reality of now. Gathering his strength, he dismissed their concerns about what his loss would mean to them with a sweep of his arm. Tearful, but not despairing, he instructed his children to support their mother and each other after he was gone. At the end, Mr L’s optimism became not about his future, but theirs. His wish was for them to embrace living their own best lives as they entered this new, not better, future, a future without him. A few days later, I visited him in his hospital room while he was waiting to go home with hospice care. He was dozing in the bed, and I hated to wake him. Then he opened his eyes and smiled. We chatted for a bit, but he tired easily. As I prepared to leave, I tried to give him the Vulcan salute one last time. He shook his head and opened his arms. “Give me a hug!” he said. And I did. I would like to thank Mr L’s family and the Moving Pens writing group at the Medical College of Wisconsin for their invaluable support. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. With me today is Dr. Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin and the author of “When the Future is Not Now.” Dr. Retseck has no disclosures. Welcome to the show, Janet. Dr. Janet Retseck: Well, thank you. Thank you for inviting me. Dr. Lidia Schapira: It's our pleasure to have you on. I like to start the conversation by asking authors what is on their night table or if they have a good recommendation for our listeners and colleagues. Dr. Janet Retseck: Well, I usually read three books at a time—one book of short stories, one book of nonfiction, and one novel. And right now I'm reading Elizabeth Hand's book of short stories, Last Summer at Mars Hill. I am reading Dr. Rachel Remens' Kitchen Table Wisdom because I work with The Healer's Art, and I found this book misplaced, and I thought, "Oh, my, I should read that." And I'm reading a novel called The Donut Legion by Joe Landsdale. And I bought this because I liked the title, and I am very hopeful that it involves a group of people using donuts to fight evil. Dr. Lidia Schapira: How interesting. I look forward to listening and hearing more about that. Let me start by asking a little bit about your motivation for writing this essay. I mean, we often write to process difficult experiences, and then what leads many authors to want to share it and publish it is that there is a message or that something was particularly impactful. And I was struck by the fact that you start by sharing with us that you took care of Mr. L, the patient, and the story some time ago, several years ago. So what about Mr. L sort of left a deep impression with you, and if there is one, what is the message and what drove you to write this story? Dr. Janet Retseck: Mr. L and I connected right away when he came to my clinic. At that time, he did have a curable lung cancer, but everything that could go wrong did go wrong. Yet he had a dispositional optimism. He always told us, no matter what was going on, "I'm doing great,” just like that. When he died, I had a lot of grief around that. And at that time, I thought I would perhaps write about that grief and whether I had any right to that grief. And so I opened up a software that allows mind mapping, and I just looked at it last night in preparation for this interview. And on one side, it has all the things that I cared about and connected with Mr. L, and on the other, there's this bright purple line going with big letters "Do Better." Then I reflected again on our connection with the Vulcan “Live long and prosper,” and how ironic it was that that's what one of our connections was. And yet he was not living long and prospering, and nothing about that over-the-top optimism of Star Trek had happened at all with all the medicine that I was able to give him. And that's where it came together. Dr. Lidia Schapira: Let's talk a little bit about that Vulcan salute. My digging around a little bit led me to understand that it was Leonard Nimoy who introduced that and that it's really a representation of a Hebrew letter, Shin. So how did you and Mr. L come up with a Vulcan salute? What did it mean to you? It's very moving how you tell us about it and what it symbolized. And so I just want to give you a chance to tell our listeners a little bit more about that. Dr. Janet Retseck: Well, there was a point during his chemoradiation when Mr. L developed the COVID infection, and radiation oncology wanted to continue with radiation, and he wanted to continue with chemotherapy. And everything we knew at the time, we felt it would be safe to do so because it's a pretty low dose. It's just radio-sensitizing. But anyone getting chemotherapy in our infusion center had to be in an isolation room. And this has a glass window. And I was walking past, and I saw him in there, and I kind of goofed around with him. The scene from the movie Wrath of Khan came to me, where Spock is in an isolation room, and Kirk connects with him through the glass. Spock is dying, and Kirk doesn't want him to die, and they give the Vulcan salute to each other through the glass. And of course, he couldn't quite do it. He knew what I was doing. He watched Star Trek in the past, but he wasn't especially a fan. But after that, that was our thing. Whenever he came in, he was trying, he was struggling to push his fingers apart. That was one of the ways we just connected with each other, to signal our affection for each other. Dr. Lidia Schapira: There is a lot of affection here. When I finished reading it, I read it several times, but I just thought the word "love" came to mind. There's so much love we feel for patients. We often don't quite say the word because we have these weird associations with love as something that's forbidden, but that's what this feels like, and that's the origin for our grief. I mean, we've really lost a loved one here as well. Mr. L sounds incredibly special, even in that last scene where he wants his family to imagine a future without him. So tell us a little bit about your reflections from what you've learned from and with Mr. L about how people who have really no future to live think about their own future and sort of their presence or their memory for those who love them. Dr. Janet Retseck: That's a very complicated question. For Mr. L. I think he was certain he was going to do well, that with all everything that we would be giving him, that he would survive and spend more time with his family and that's what he held onto. And I don't know that it was sort of delusional hope. We get every brand of acceptance and denial as oncologists. We have people coming in with their magic mushrooms, their vitamins, their vitamin C infusions. We have people going down to Mexico for their special secret treatments that have been withheld by pharmaceutical companies. We have people denying altogether that they are sick, coming in with fungating masses. But Mr. L was very different from that. His disposition was "Everything is good and it's going to be good, and I trust you 100%," and that's a big responsibility— is to take the patient's trust and to try to deliver on that. And in some way, my grief when he died was I could not do that in a lot of the ways the medicine world is at now. We break our patients' trust. Dr. Lidia Schapira: That's an interesting way of looking at it, and I sort of would push back a little bit on that. Dr. Janet Retseck: As you should. Dr. Lidia Schapira: Good. I'm trying to do my job here and say that you shared that you both were disappointed by the limitations of what current medicine can offer, and that's I think where you sort of spin your sort of philosophical and very beautiful reflection on the future. It is my understanding that that's where the title of this piece also comes, that you and Mr. L sort of could bond over his optimism and over the sort of futuristic view that medicine can fix anything until you couldn't. And then you both sort of adapted, adjusted, accepted, and again bonded in a very different way through the bonds of affection and support in presence. So I would not want your readers to think that your heart is broken because you disappointed him because you couldn't cure him, but that your heart is broken, if it was, because you had such affection and respect for him. I agree with you that he seemed to be well served by his optimism and it was working for him until it wasn't anymore. And I wonder if you could talk a little bit more about how you think about that optimism and hope and acceptance. Dr. Janet Retseck: Well, I should come clean and say I'm an optimist myself. I have to be, as an oncologist. Here we are starting at the very beginning with a patient, a curable intent, or is palliative intent, and we are giving these very harsh drugs, and I am optimistic I am going to do good rather than hurt the patient. And I tell them that right up front, this is what we hope will happen. Optimism really subtends to everything that I do, as well as an oncologist. So I don't mean to say we shouldn't hope, we should not be optimistic about what we can do now, but there's also that tension with the desire to do better always for our patients. Dr. Lidia Schapira: Janet, I was struck by your sort of teaching us about the origin of the word optimism. So, say a little bit more about what led you to go back to thinking about what the word actually means and how your patient illustrated this for you. Dr. Janet Retseck: Thank you for asking that. It was actually serendipitous because I had settled on the Star Trek motif for thinking about my relationship with Mr. L and Star Trek with all of its optimism about the future, and it just fits so well with Mr. L's disposition. And I thought I need to differentiate that from hope or wishful thinking or magical thinking because it is something very different. So I went to the handy dictionary and looked up optimism, and right there the first definition: optimism is a philosophy developed by Leibniz regarding the best of all possible worlds. In other words, this is the world that is the best possible one of all the possibilities, even with all the suffering and the evil and the pain that we have to deal with. And so I thought, well, maybe I'll learn a little bit more about this Leibniz. I'd heard the phrase ‘best of all possible worlds’ before. I did a little research and I found this wonderful article that I cite in my paper that described Leibniz and his optimistic science. And I thought, well, this is a real way in to thinking about Mr. L and putting into a larger context of optimism versus hope and optimism and its focus on the future. And really that idea of, not that everything that's happening to him is for the best, but it's the best. He got the best, and he very thoroughly believed that he was getting the best treatment, and he was. But my point was that even though it was the best, it wasn't enough yet. So where is that ‘enough’ located? And I think it is located in the future, but it's a future we can continue to hope for, and a future I think will come to pass someday. Someday we will not need to be oncologists, just like there don't need to be doctors who... /episode/index/show/aoopodcast/id/27694122

“Why Me?”, a Question of Opportunity 07/25/2023

“Why Me?”, a Question of Opportunity Listen to ASCO’s Journal of Clinical Oncology essay, ““Why Me?”, a Question of Opportunity,” by Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre. The essay is followed by an interview with Wein and host Dr. Lidia Schapira. Wein considers if patients are able to make rational decisions about their health when they are able to accept the reality of illness. TRANSCRIPT Narrator: , a Question of Opportunity, by Simon Wein, MD “Why me?” A question is an opportunity. It is also an invitation and a revelation. A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication, or talking. Some questions appear mechanical, such as “Will I be able to drive again?” while others are more obviously self reflective, such as “Why did I get sick?” However, even the most mechanically minded question may be fraught with emotional significance. A recent Art of Oncology poem entitled “Questions for the Oncologist” listed a litany of questions the doctor encouraged his patient to ask. All, except one: “But please, don’t ask me that one thing./Don’t ask, ‘why me?’/You wouldn’t like the answer. I don’t.” Later, the doctor-poet provided the answer: “Bad luck is a second-rate explanation, I know.” The poem was sensitively, empathically, and thoughtfully written, apparently recalling an emotionally intense case. The poem reminded me of a patient I looked after some time ago and of a mentor past. An obese 60-year-old man came in. He was miserable and in pain. Ten months after definitive surgery and radiotherapy for lung cancer, the disease had returned with pain in his right chest wall. While awaiting full biopsy results, we irradiated the lesion and started nonsteroidal analgesics and duloxetine for the neuropathic pain (with the hope it might also improve his mood). Within 3 weeks, the pain had been significantly relieved although his misery was unchanged. We talked. He had been divorced for many years, worked in hi-tech, lived alone, and had lost contact with his two adult children. His parents had migrated in middle age, and he was an only child born in a new country. His parents struggled, and the family dynamic could be described as sullen. The family did little together and was silent a lot of the time. He recalls his parents, especially his father, as emotionally distant, involved in their own lives. Growing up he spent a lot of time alone. At university, he studied engineering and married his first girlfriend; however, the marriage fell apart as, in his words, “I did not know how to live together with someone else.” In his sullen home life, he had not acquired the skills of building a family nor had he developed a coherent world view. Despite good pain relief, his sense of brooding and demoralized loneliness persisted. Underneath was a seething anger. He kept asking “why me?” I assumed at first that he was referring to the cancer. He was, but not only. I consulted with a mentor, and he said he often answered that question with: “Why not you?” I tried it. The patient was flummoxed. It pushed him to reflect. With further probing, over time, his thinking changed from a closed loop of “Why me,” to “What is life asking of me?” And further afield he reflected on his childhood, his failed marriage, and estrangement from his children. Why did this happen to me? He shook off some of his depressed mood as he began to piece together his life’s trajectory. In an insightful moment of acceptance he noted: “Indeed, why not me … What makes me special that I should not have the disease?” Sadly, there was no fairy-tale ending. He died alone. When a patient asks a difficult question such as “Why me?” or “How long have I got doc?” the psychologically astute analysis is, “Why and what does the patient want to know?” and “Why now?” Responding with the question “Why not you?” may sound harsh, even confrontational. “Why not you?” is designed to be challenging to shift the locus and focus of thinking from a passive and often ineffectual cry, “Why me?” Nevertheless might such a response appear insensitive and lacking empathy? Over the years, I have learnt that practically any question can be asked of a patient so long as it is asked for the sake of the patient, in an appropriate manner and in the right circumstance. In short, the questions must be empathic. Wiseman suggested the empathic response has four characteristics: to see the world as others see it, to be nonjudgmental, to understand another person’s feelings, and to communicate your understanding of that person’s feelings. Avoiding difficult and embarrassing questions may provide short-term relief but possibly sets the stage for later unresolved angst. I recently did a sabbatical in palliative care in Australia, a fair distance from the Middle East both physically and culturally. The openness and tempo of questions asked of patients and family in Australia might be considered brusque (or confrontational) and hope depriving in the Middle East. Although the influence of culture is pervasive, it is the individual who needs our help and who ultimately determines the conversation. Sometimes the individual is not open to talking therapy. It is an important communication skill to know when not to probe. “Why me” is both a deeply philosophical and a naive question. “Why me” addresses the question of justice and seeks an explanation on the assumption that ours is a rational world. However if a person thinks the world is inherently random, then such a question is naive and without intellectual value since everything is bad luck, like a random genetic mutation. “Why me” can be a profound philosophical question as the doctor-poet implied when he concluded: “Search for a better answer within, as I have. Unsuccessfully, so far.”1 The “answer within” bypasses the issue of whether it is a meaningless world or a god-driven world. The “answer within” locates the responsibility within ourselves to try to make sense of what is happening with my life. An answer within suggests a philosophy that we can make sense and meaning of my life, despite the world’s apparent carelessness or bad luck. Alternatively many people, especially here in the Middle East, hold a theological belief, and the question “Why me?” is resolved within the theology of their religious beliefs. The believers are, in a way, lucky. Patients who ask the existential question “Why me?” can be challenged to reflect on themselves. “Why not you?” is a probing question that, with skill and some luck, may enable a measure of acceptance: “Indeed, why not me” (Fig 1). Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. In this episode, we will be discussing his Art of Oncology article, "Why Me? A Question of Opportunity." At the time of this recording, our guest has no disclosures. Simon, welcome to our podcast and thank you for joining us. Dr. Simon Wein: Thank you very much, Lidia. It's a pleasure to be speaking with you. Dr. Lidia Schapira: It is our pleasure as well. I'd like to start this conversation by asking our contributing authors to tell us what they're currently reading or if they have a book they've just read they want to recommend to colleagues and listeners. Dr. Simon Wein: So I recently picked up and reread The Count of Monte Cristo by Alexandre Dumas. I don't know if you've read it. It's a very long production because in those days they used to have a weekly chapter, weekly several chapters, and they didn't have WhatsApp and television and cinemas. And it's very long, but it's a wonderful read. I enjoyed it very much. The other book I'm reading now, more slowly, is The Nature of Natural History by Marston Bates. He is an American zoologist, and it's a wonderful read about his overall view of life, animals and plants, and I'm enjoying it very much. I have a great interest in gardening, and I think his views are very interesting. Dr. Lidia Schapira: That's wonderful. So let's turn now to your essay, "Why Me?" This essay starts as a conversation with an author who has published a prior work, a prose poem of sorts, in Art of Oncology. Tell us what it was about that read that sort of triggered you to want to respond and then clearly elaborate into what's turned into a beautiful manuscript. Dr. Simon Wein: I think what really grabbed me was the sensitivity of the oncologist as he was writing it, and the pain, it's a little bit strong, that word, but the difficulty he had in dealing with this fear that the patient would ask him, "Why me?" He wrote it so beautifully with such empathic sensitivity, that it really grabbed me, that question, "Why me?" that he was scared of. And it recalled for me, my mentor from many, many years ago, Dr. Wally Moon. And I remember as clear as yesterday, he'd say, "Patient asked me the question, 'Why me?' I'd ask him back, 'Why not me?'" So that's what it triggered off for me reading that essay, those two things. Dr. Lidia Schapira: Simon, you also make an interesting point that I want the listeners also to think about, and that is that a cultural context influences whether or not we feel comfortable even asking these questions, right? And you contrast your experience in a recent setting in Australia with your typical practice in Israel and the Middle East. Can you talk a little bit about that? Dr. Simon Wein: The older I get in this profession, the more I'm impressed by the importance of culture and yet how much we have to honor the individual and that ongoing tension between those two points of the compass. And I was brought up in Australia and sort of rather Anglo-Saxon and reserved in that way, and in Australia much less likely, in a sense, to be forthcoming and outgoing in what we want to say. And in Israel, people are much more open. And yet when we come to the consulting room in Israel as in other parts of the Middle East, indeed in Eastern Europe, a lot of the literature has demonstrated that we don't want to tell the truth straight out directly. And in Australia, on the other hand, even though it's a reserved society, people are straight out in the consulting room. Bang. They'll say, "This is the prognosis and this is what it is." So I've developed this model for my own thinking, is that in the West, the individual is the final moral arbiter of deciding ethical behavior, whereas in the Middle East it's more the family or, in a broader context, the culture. And so in Israel, you're much more likely to speak with the family, involve the family, or they'll come in and ask you not to say this to Grandma, and you have to make up your mind where the individual stands and where the cultural family influences. But from my point of view, I still think that the individual has to be honored and respected ultimately in the final decision. Dr. Lidia Schapira: Simon, I want to also ask a little bit about your style and your communication style with patients. You are so clear in your descriptions to address not only physical pain but emotional pain and suffering and misery, as you call it. How do you sit with a patient and try to draw them out in a way that is empathetic and respectful, but also to help them understand that you actually care? Dr. Simon Wein: I'll take you back to another mentor I had. That was Bill Breitbart at Memorial. I did a two-year fellowship in psychiatry psych-oncology there many years ago. As I said, I came from Australia. I was rather green in psychological terms, and I used to do rounds with Bill. And I remember this one patient I had with Bill, and it was a middle-aged man. He was a working blue-collar man. And Bill went up to him, we were asked to see him for depression, and Bill went up to him and started talking with him, and within 30 seconds he'd started asking about the tattoos on his arms. And I thought, wow, that's fairly personal to get into that. You only just met the bloke and you're already talking about that. And of course, from that I learned and with other experiences, that you can ask any patient any question so long as three conditions are fulfilled, and this is what I teach to the residents. The first condition is that it has to be at the right time. Sometimes you have to ask the patient privately and you ask the patient, the family, then to leave. It has to be the right you can't ask questions like this in the corridor, so the timing has to be right. The second thing, and this is I learned a lot from Bill and from my previous mentor, Wally Moon, you have to ask it in the right way. You have to ask with the right intonation. You could have said to that guy with the tattoos, "Wow, look at those tats. I mean, where did you get them from?" You know, that might have then made him shirk a little bit and stand back. Or you could have said, "Hello, Mr. Jones, goodness gracious, look at those tattoos you've got. They look very interesting. Do you mind telling me about them?" And so the way you ask. But I think the third condition for asking any question to any patient is that it has to be for the sake of the patient. It's not for me, it's not for anybody else. It has to be that in some way, this question will benefit the patient. The patient will respect that, they'll see that. And so I remember once I wanted to go and take a photograph of this guy who had these enormous hemangioma tumors on his leg. And I went in and I felt uncomfortable. And I realized the reason I felt uncomfortable was I was taking these photographs for myself, not for his sake. Eventually, I spoke to him and he agreed. He was agreeable for education and so forth. But I think those three conditions, the right time, asking it in the right way, in an empathic way, that's a key word, empathic or sensitive or charming or pleasant way. And for the third condition, for the sake of the patient, and I think that's really, really critical in being able to ask a patient any question. Dr. Lidia Schapira: That is such a thoughtful, beautiful answer. And I'm going to switch to another topic just because I want to pick your brain and I'm curious to know how you would handle this. And that is, I know you do palliative care and you've clearly trained in the psychological aspect of serious illness, but do you think, wearing your palliative care hat, that cancer is special and that cancer patients are a special population when they ask, "Why me?" Dr. Simon Wein: That’s a really good question, isn’t it? In our hospital now, I started off in palliative care about 15 years ago. For the first 10 years, we only did cancer patients. I’m an oncologist by training. But now we’re opening up to non-cancer patients. I think that in society there’s little doubt that the myth of cancer being the same as a death sentence is very strong. There are many patients with advanced New York Heart Association IV heart failure whose prognosis that is much worse than many of our cancer patients. But cancer has gotten this flavor of death, of Damocles’ Sword hanging over your head and that’s that, and it raises- immediately goes to all the existential questions of meaninglessness and emptiness and death and fear and loneliness and all that, much more than these other ones. And it’s not true. Cancer patients today may live much much longer than we once knew and much longer than many other non-cancer patients. So I think there is something very special about that. And cancer has got this other horrific aspect about it which is that the body is eating itself up. Your own cells have turned against you. And I think psychologically, emotionally– Well, auto-immune diseases are not dissimilar in the sense of the body turning against itself. But cancer, it’s a sense of the cells dividing and coming on and eating you up. It’s got that mythical aspect to it. Dr. Lidia Schapira: And if I may add one more thing, in my mind, it’s also that cancer treatment is so grueling and awful and sometimes actually exacerbates the suffering. So I think that it’s cancer and the fear of consequences and exposure to cancer treatments, would you agree? Dr. Simon Wein: A lot of our patients come to us, but they won’t say to the oncologist how tough the treatment has been. They don’t want to sort of feel weak in front of the oncologist they don’t want to give up on that chance of getting out of the cancer. Because if they say that to the oncologist, the oncologist might say, “Oh, you don’t want to miss this chance, but you’re not good. But maybe we take a break from the cancer treatment.” But many of them are absolutely exhausted. Absolutely exhausted. And then the other aspect of that, not just the fear of the oncologist, but also with the family. The family are egging them on, and I often say to the family, “Listen, guys. Mom is very, very tired. You haven’t got the treatment. You’re young, you’re well, you don’t feel sick, you want to fight.” The patient doesn't want to disappoint the family. The family don’t want to disappoint mom. Nobody talks to each other and they have this dance of the macabre where nobody’s talking to each other and the patient just keeps getting this treatment. I mean that’s one of the things why I think it’s worth confronting patients with the question, “Why not you?” If only to have some sense of acceptance of what it is. Now often in palliative care oncology, when you say acceptance, it means “Right, I accept I am going to die.” But I don’t see it like that. I think if you have a measure of acceptance, then it will enable you to make more rational decisions about your cancer care. I mean how rational can you be in deciding about the cancer? We don’t know. The oncologist gives you 30%. Well, how can you interpret 30%? I don’t know. So the rationality is limited. But if you’re understanding of what’s going on, I think it helps you make more rational- to have treatment and continue or not. So I think that’s why it’s a useful thing to try and do that. But some patients don't want to, and I just don’t push it. And many is the time that I’ve said to a patient, “You know, this is very bad. You’ve got cancer.” It’s like they come back next week, “How’s my virus going?” It’s like ‘It’ll just pass and that’s it,” and so you realize that and you just continue on. Dr. Lidia Schapira: And so my last question to you, Simon, is this: as an oncologist, as a palliative care physician, as an expert in communication and psycho-oncology, what do you say to your oncology colleagues who have trouble responding to the question that patients frequently ask, ‘Why me?’ Dr. Simon Wein: Lidia, it's a good question because not often do I get a chance to speak to oncologists in this way. We're often kept out of the room, and when the decisions are made, it's very difficult to backtrack a decision about treatment. Very difficult. One, because you can destroy any trust that the patient will have built up in the system, and two, it's not really collegial then afterward to go and undermine. And so that's why I write lots of articles on these subjects, Lidia, and I hope that the oncologists will read them and I hope that they get published. I distribute them at work and... /episode/index/show/aoopodcast/id/27529515

But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care 07/11/2023

But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care Listen to ASCO’s Journal of Clinical Oncology essay, ” by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented. TRANSCRIPT Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD () For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit. Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him. For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different. While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions. Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant. When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients? I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one’s disease trajectory. Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload. As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two. While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities. Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community. There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions. There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter. The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections. As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, “‘But Where's My Doctor?’: The Increasing and Relentless Fragmentation of Oncology Care.” At the time of this recording, our guest has no disclosures. David, welcome to our podcast, and thank you for joining us. Dr. David Mintzer: Thank you for the invitation, Lidia. Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about. Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing. Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer. So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this? Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down. Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that? Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff. But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make. Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable? Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years. Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer. This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out. Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners? Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly. Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that. Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything. We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss. Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in? Dr. David Mintzer: Well, as... /episode/index/show/aoopodcast/id/27433482

Cancer Stories: The Art of Oncology

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