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Cancer Stories: The Art of Oncology

Podcast Cancer Stories: The Art of Oncology
American Society of Clinical Oncology (ASCO)
Embark on an intimate journey with heartfelt narratives, poignant reflections, and thoughtful dialogues, hosted by Dr. Mikkael Sekeres. The award-winning podcas...

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  • The First Hero: A Son Reflects on His Father’s Illness
    Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "The First Hero” 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: The First Hero, 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. Like, share and subscribe 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.
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  • I Hope So Too: Creating Space to Hope with Patients and Families
    Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "I Hope So Too” 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: I Hope So Too, 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 Sekeres: Nicely put. Your story is particularly poignant because the patient you described was dying from the very treatment that cured his leukemia. It's this, I'm going to use the term badlands again. It's this terrible badlands we sometimes find ourselves where, yes, the treatment has been successful, but at the cost of a human life. Do you think that as healthcare providers, we react differently when a patient is sick, from side effects to our recommendations, as opposed to sick from their disease? Dr. Ricky Leiter: I think we probably do. It's hard because I think every patient in every case pulls at us in different directions. And this case was Carlos, who I called him, it was such a challenging situation for so many reasons. He was young. He really couldn't communicate with us. We were talking to his mom. Like, there were so many layers to this. But I think you're right. that underlying this, there's a sense of “We did everything we could beautifully, to cure him of his disease, and now he's dying of that, and what does that mean for us as clinicians, physicians. That becomes really hard and hard to sit with and hold as we're going back every day. And I say that as the palliative care consultant. So I can only imagine for the oncology team caring for him, who had taken him through this, what that felt like. Dr. Mikkael Sekeres: Well, you describe, again, beautifully in the piece, how the nursing staff would approach you and were so relieved that you were there. And it was, you know, you got the sense- I mean, obviously, it's tragic because it's a young person who died, but you almost got the sense there was this guilt among the providers, right? Not only is it a young person dying, but dying from graft versus host disease, not from leukemia. Dr. Ricky Leiter: Absolutely. There was guilt because of what he was dying of, because of how he was dying that he was so uncomfortable and it took us so long to get his pain under control and we really couldn't get him that balance of pain control and alertness that we always strive for was pretty much impossible from the beginning. And so it was layer upon layer of distress and guilt and sadness and grief that we could just feel every day as we stepped onto the floor. Dr. Mikkael Sekeres: Yeah. I don't know if you've ever read- there's a biography of Henry Kaplan, who was considered the father of radiation therapy, where there was this incredible moment during his career when he presented at the AACR Annual Meeting the first cures for cancers, right? No one believed it. It was amazing, actually curing cancer. And then a couple years later, people started dribbling into his clinic with cancers because of the radiation therapy he gave, and he actually went into a clinical depression as a result of it. So it can affect providers at such a deep level. And I think there's this undiscussed guilt that permeates the staff when that happens. Dr. Ricky Leiter: Absolutely, absolutely. It's right there under the surface. And we rarely give ourselves the space to talk about it, right? To really sit down and say, how are we approaching this situation? How do we feel about it? And to sit with each other and acknowledge that this is horrible. It's a horrible situation. And we feel guilty and we feel sad and we feel grief about this. Dr. Mikkael Sekeres: It's been just terrific getting to know you and to read your piece, Ricky Leiternd, a we really appreciate your writing. Keep doing what you do. Dr. Ricky Leiter: Oh, thank you so much. It's a privilege to get the piece out there and particularly in JCO and to be here with you. So I really appreciate it. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.   Like, share and subscribe so you never miss an episode and leave a rating or review.  Guest Bio: Dr. Ricky Leiter is from the Dana-Farber Cancer Institute.
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  • You Don't Bring Me Flowers: Hospital Policy vs. Patient Joy
    Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "You Don't Bring Me Flowers” 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: You Don’t Bring Me Flowers, 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 put you on the spot a little bit, Katy, can you answer your own question? Dr. Kathryn Cappell: Boy, I'm not sure if I can still. I think that's part of where the tension in the piece arises from. I think when you're in a hospital, you're working as a team, and part of the thing I think about is nurses are an important part of that team and they structure the ward. So I don't think it's just my decision. I think it's a hospital decision as a team. And I do think there's a component of fairness. If you're going to say it to one patient, that's the policy, it should be the policy to all patients. So in some ways I reassure myself about that. But in the other side of me, it still makes me a little sad. Dr. Mikkael Sekeres: Yeah, it's well stated. I'm wondering that the hospital in which you work changed their policy or did your previous position change their policy? Dr. Kathryn Cappell: I haven't actually mentioned this story to them yet or asked them to change their policy. I do feel it's pretty common at the different hospitals. I've worked at seeing a policy similar to this, so I haven't asked. Dr. Mikkael Sekeres: Well, Katy, I want to thank you for joining us today on the podcast. Your writing is elegant, the tale that you tell resonates with all of us, and it's been just delightful getting to know you even better. Dr. Kathryn Cappell: Great to meet you as well. Thank you for having me on. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Thank you again.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.     Like, share and subscribe so you never miss an episode and leave a rating or review.  Guest Bio: Dr. Kathryn Cappell is Assistant Research Physician at the National Cancer Institute.  
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  • 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 asco.org/podcasts. 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.   Like, share and subscribe 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.  
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  • 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, "Did I Mess Up Today?” 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: Did I Mess Up Today? 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 whether that is the best way for them to develop and maintain their clinical skills. Dr. Lidia Schapira: And this brings me to another question, which is sort of our oncology workforce and the investment that we all have in our excellent clinicians and experts in diseases. If we are to pluck some of our best to perform more and more leadership, administrative and governance roles, aren't we doing a disservice to our patients and future patients? Dr. John Sweetenham: I think that in terms of our oncology leadership, both clinically and academically, it could use a bit less gray hair and I think that there are enormously talented mid-career folks who aren't necessarily advanced and getting the opportunities that they should have to really shine in those areas to develop full time clinical and academic practices and be the ones who are really clinically engaged. And then the people of, I won't say my generation, maybe the generation below me now, it seems to me that there is a benefit to gaining administrative leadership roles for those who want to go in that direction as you advance further through your career and that perhaps making sure that those people in their mid-career role, where they're probably at their most productive, are able to do clinically the things that they want to do. What I'm trying to say is I think that you're quite right that we do pick off people who are going to be really talented in a specific direction and distract them from their clinical practice. Maybe we just have to be a bit more reserved about how we do that and not distract those people who are really strong clinicians and pull them in directions that they may, indeed, be attracted to, but perhaps it's a little bit early for them to be doing it. Dr. Lidia Schapira: It's an interesting question and dilemma because on the one hand we say we don't want people who just have business degrees administrating in medical spaces. But on the other hand, we don't want to distract or pluck all of our clinical talent for administrative roles that take them away from what we prize the most and what our workforce actually needs. And that sort of brings me to my next question, which is something I'm sure you've thought about, which is, as we get older and as we have more gray hair, those of us or those of you who choose to allow yourself to be seen as gray, some of us still cover, how do we present interesting career tracks also that acknowledge the fact that perhaps people want to pivot or take on new roles and still keep them engaged in actively seeing patients because they have so much to offer? Dr. John Sweetenham: I think the key there is that there has to be a balance between how much of somebody's time, a physician's time should be taken up in those roles. I'll only speak for myself here, but when I got into a more administrative role, it was quite seductive in a way and I quite enjoyed it. It's a very different perspective. You're doing very different things, but you do get this feeling that you're still having impact, you're just doing it in a different framework. It is intriguing and it's a lot of fun. In a way, I think it comes down to time. I think that somewhere around, for me, a 40% clinical commitment, I think I could have continued that. And I think if I could have resisted the temptation to be drawn more into the administrative side, or if somebody had said to me, “No, you're not going to do that,” then I would have resisted the temptation to do that. I think that there are people who would say, “Well, you can't take on a physician leadership role in a busy academic center and do it as a part time job.” Well, there's probably an element of truth in that, but you certainly can't take care of patients as a part time job either. And I do think that one of the things that we should ask ourselves maybe in terms of developing physician leaders is should we insist that there is a minimum amount of clinical time that the individual still has to commit to? And that may be the answer. I think that it does help to maintain credibility among colleagues, which, I think, is very important, as I mentioned in the article. So that's my only perhaps suggestion I would make is just don't allow your physician leaders to get so wrapped up in this that they start to kind of walk away from what we were all trained to do. Dr. Lidia Schapira: I'd love to hear you talk a little bit more about your experiences, reflections on what you call the ‘art of oncology’ and the ‘art of practicing in oncology.’ Dr. John Sweetenham: I think that many of us, myself included, tried throughout my career to be evidence-based. I tried really hard to do that, and I hope for the most part, I succeeded. But I think there are times when that does get challenged. Let me give you one example that comes to mind, and that would be just occasionally, from time to time, I had the good fortune to take care of people of some power and influence. And there is, I think, in that situation, a temptation to be drawn into doing what those people want you to do, rather than what you think is the right thing to do. It can be very, very difficult to resist that. And so to my mind, part of the art is around being able to convince those folks that what they're suggesting would not necessarily be in their best interest. That would just be one example.  I think the other thing also that strikes me is you can't walk away from the emotion of what we do. And I still think back to some of the folks that I took care of when I was practicing bone marrow transplantation. This would be even back in the UK and folks would contact me some years afterwards. Some of my former patients from the UK would contact me and would still keep in touch and had medical complications, oncology complications, that followed them. And it struck me then, they were 5,000 miles away. I had no useful advice to give them, really, other than to listen to their physicians and get second opinions and those kinds of practical things. But it did strike me that part of the art is, and perhaps art is the wrong word, but there is a big emotional commitment when people feel 20 years on that they're still wanting to keep in touch with you and let you know what's happening in their lives, you know. And so I think that however much we try to be scientific and detach ourselves from all of that, our interactions with folks, I think sometimes we don't realize how impactful and long lasting they can be. Dr. Lidia Schapira: I would say that that speaks to your success in establishing a therapeutic alliance, which is probably one of the things that we often undervalue, but is a huge element of truly human-centered, compassionate practice, whatever we want to call it.  But I do have one last question, and that is how you have dealt with or how you have learned to deal with in your practice, with some of these feelings of regret and relief that you mentioned that came with hanging up the stethoscope but the huge emotions that accompany making decisions about one's practice. Dr. John Sweetenham: It has almost been a natural sort of stepwise progression. So it's almost a journey for me. And so like I mentioned to you earlier on, I struggled around the time when I gave up inpatient practice. I struggled again a little bit when I gave it up completely. Although it was very much balanced by this sense that I didn't have to worry if I was kind of screwing up anymore, so that was good. But I think the other thing is there are other things going on. And so rather than dwelling on that, I've stayed active to some extent in the oncology world by some of the other things I do. I'm still trying to write one or two other things at the moment. And I guess it's partly a kind of distraction, really that has helped me to get through it. But I think in the end doing other stuff, I've actually traveled a fair bit. My wife and I have traveled a fair bit since I actually stopped working. And the other thing, I guess it sounds a bit lame and corny, but after 40 years or so, there are a lot of good memories to think back on. And again, it sounds very cliched and corny - I console myself with the fact that I hope for some of the folks that I took care of that I made a difference. And if I did, then I'm happy with that. I have closure. Dr. Lidia Schapira: What a lovely thought. I was thinking of the word distraction as well before you said it. Well, listen, I look forward to reading what you write and to being inspired and to continue to be in conversation with you. Thank you so much for joining our show today. And for our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review.   Guest Bio: Dr. Sweetenham, host of ASCO Daily News podcast, has recently retired after 40 years of practice in academic oncology.
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