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 podcast JCO Cancer Stories: The Art of Oncology podcast unveils the hidden emotions, resilient strength and intense experiences faced by those providing medical support, caring for, and living with cancer.
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Apr 10, 2025 • 28min
Tamales: Celebrating a Mexican Christmas Tradition
Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "Tamales" by Megan Dupuis, an Assistant Professor of Hematology and Oncology at Vanderbilt University Medical Center. The article is followed by an interview with Dupuis and host Dr. Mikkael Sekeres. Dupuis reflects on how patients invite their doctors into their culture and their world- and how this solidified her choice to be an oncologist. TRANSCRIPT Narrator: Tamales, by Megan Dupuis, MD, PhDI do not know if you know this, but tamales are an important—nay, critical—part of the Mexican Christmas tradition. Before I moved to Texas, I certainly did not know that. I did not know that the simple tamal, made of masa flour and fillings and steamed in a corn husk, is as essential to the holiday season as music and lights. Whole think pieces have been written in The Atlantic about it, for God's sake. But, I did not know that. A total gringa, I had grown up in upstate NY. We had the middle-class American version of Christmas traditions—music, snow, Santa, and a Honey Baked Ham that mom ordered 2 weeks before the holiday. I had never tried a homemade tamal until I moved to Texas. We had relocated because I was starting a fellowship in hematology/oncology. A central part of our training was the privilege of working at the county hospital cancer clinic. Because we were the safety-net hospital, our patients with cancer were often under- or uninsured, frequently had financial difficulty, and were almost always immigrants, documented or otherwise. In a typical clinic day, over 90% of my patients spoke Spanish; one or two spoke Vietnamese; and typically, none spoke English. From meeting my very first patient in clinic, I knew this was where I needed to be. Have you ever been unsure of a decision until you have been allowed to marinate in it? That is how I felt about cancer care; I had not been sure that my path was right until I started in the county oncology clinic. I loved absorbing the details of my patients' lives and the cultures that centered them: that Cuban Spanish is not Mexican Spanish and is not Puerto Rican Spanish; that many of my patients lived in multigenerational homes, with abuelos and tios and nietos all mixed together; and that most of them continued to work full-time jobs while battling cancer. They had hobbies they pursued with passion and lived and died by their children's accomplishments. I learned these details in the spaces between diagnosis and treatment, in the steady pattern woven in between the staccato visits for chemotherapy, scans, pain control, progression, and hospice. In one of those in-betweens, my patient Cristina told me about tamales. She had faced metastatic breast cancer for many years. She was an impeccable dresser, with matching velour tracksuits or nice slacks with kitten heels or a dress that nipped in at the waist and flared past her knees. Absolutely bald from treatment, she would make her hairlessness look like high fashion rather than alopecia foisted upon her. Her makeup was always painstakingly done and made her look 10 years younger than her youthful middle age. At one visit in August, she came to clinic in her pajamas and my heart sank. This was a familiar pattern to me by now; I had taken care of her for 2 years, and pajamas were my canary in the coal mine of progressing cancer. So on that sunny day, I asked Cristina what her goals would be for the coming months. The cancer had circumvented many of her chemotherapy options, and I only had a few left. "Doctora D, I know my time is limited…" she started in Spanish, with my interpreter by my side translating, "but I would really like to make it to Christmas. My family is coming from Mexico." "Oh that's lovely. Do you have any special Christmas plans?" I ventured, wanting to understand what her holidays look like. "Plans? Doctora D, of course we are making tamales!" She laughed, as though we were both in on a joke. "Tamales? At Christmas?" I asked, signaling her to go on. "Yes yes yes, every year we make hundreds and hundreds of tamales, and we sell them! And we use the money to buy gifts for the kids, and we eat them ourselves too. It is tradicio´ n, Doctora D." She underlined tradicio´ n with her voice, emphasizing the criticality of this piece of information. "Okay," I said, pausing to think—December was only four months away. "I will start a different chemotherapy, and we will try to get you to Christmas to make your tamales." Cristina nodded, and the plan was made. Later that evening, I asked one of my cofellows, a Houston native, about tamales. He shared that these treats are an enormous part of the Houston Christmas tradition, and if I had any sense, I would only purchase them from an abuela out of the trunk of a car. This was the only way to get the best homemade ones. "The ones from restaurants," he informed me, "are crap." So summer bled into fall, and fall became what passes for winter in Texas. On 1 day in the middle of December, Cristina came into clinic, dressed in a colorful sweater, flowing white pants, black boots, and topped off with Barbie-pink lipstick. "Cristina!" I exclaimed, a bit confused. "You don't have an appointment with me today, do you?" She grinned at me and held up a plastic grocery bag with a knot in the handles, displaying it like a prize. "Tamales, Doctora D. I brought you some tamales so you can join our Christmas tradition." I felt the sting of tears, overwhelmed with gratitude at 11:30 in a busy county clinic. I thanked her profusely for my gift. When I brought them home that night, my husband and I savored them slowly, enjoying them like you would any exquisite dish off a tasting menu. Sometimes, people think that oncologists are ghouls. They only see the Cristinas when they are in their pajamas and wonder why would any doctor ever give her more treatment? My answer is because I also got to see her thriving joyfully in track suits and lipstick, because I got to spend countless in-betweens with her, and because I helped get her to the Christmas tradiciones I only knew about because of her. And in return, she gave of herself so easily, sharing her life, her passion, her struggles, and her fears with me. Caring for Cristina helped me marinate in the decision to become an oncologist and know that it was the right one. And if you are wondering—yes. Now tamales are a Christmas tradicio´n in the Dupuis household, too. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm a professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. What a pleasure it is today to be joined by Dr. Megan Dupuis from Vanderbilt University Medical Center. She is Assistant Professor of Hematology and Oncology and Associate Program Director for the Fellowship program. In this episode, we will be discussing her Art of Oncology article, "Tamales." Our guest's disclosures will be linked in the transcript. Both she and I have talked beforehand and agreed to refer to each other by first names. Megan, welcome to our podcast, and thank you for joining us. Megan Dupuis: Oh, thanks so much for having me, Mikkael. I'm excited to be here. Mikkael Sekeres: I absolutely loved your piece, "Tamales," as did our reviewers. It really did resonate with all of us and was beautifully and artfully written. I'm wondering if we could just start—tell us about yourself. Where are you from, and where did you do your training? Megan Dupuis: Sure. I'm originally from upstate New York. I grew up outside of Albany and then moved for college to Buffalo, New York. So I consider Buffalo home. Big Buffalo Bills fan. And I spent undergrad, medical school, and my PhD in tumor immunology at the University of Buffalo. My husband agreed to stick with me in Buffalo for all twelve years if we moved out of the cold weather after we were done. And so that played some factor in my choice of residency program. I was lucky enough to go to Duke for residency—internal medicine residency—and then went to MD Anderson for fellowship training. And then after Anderson, I moved up to Nashville, Tennessee, where I've been at Vanderbilt for almost four years now. Mikkael Sekeres: That's fantastic. Well, I have to say, your Bills have outperformed my Pittsburgh Steelers the past few years, but I think I think we have a chance this coming year. Megan Dupuis: Yeah. Yep. Yep. I saw they were thinking about signing Aaron Rodgers, so we'll see how that goes. Mikkael Sekeres: Yeah, not going to talk about that in this episode. So, I'm curious about your story as a writer. How long have you been writing narrative pieces? Megan Dupuis: I have always been a writer—noodled around with writing and poetry, even in college. But it was when I started doing my medicine training at Duke that I started to more intentionally start writing about my experiences, about patients, things that I saw, things that weighed either heavily on me or made a difference. So when I was at Duke, there was a narrative medicine writing workshop—it was a weekend workshop—that I felt like changed the trajectory of what my interest is in writing. And I wrote a piece at that time that was then sort of critiqued by colleagues and friends and kicked off my writing experience. And I've been writing ever since then. We formed a narrative medicine program at Duke out of this weekend workshop experience. And I carried that through to MD Anderson when I was a fellow. And then when I joined at Vanderbilt, I asked around and said, "Hey, is there a narrative medicine program at Vanderbilt?" And somebody pointed me in the direction of a colleague, Chase Webber, who's in internal medicine, and they said, "Hey, he's been thinking about putting together a medical humanities program but needs a co-conspirator, if you will." And so it was perfect timing, and he and I got together and started a Medical Humanities Certificate Program at Vanderbilt about four years ago. And so- Mikkael Sekeres: Oh, wow. Megan Dupuis: Yeah. So I've been doing this work professionally, but also personally. You know, one of the things that I have been doing for a long time is anytime there's an experience that I have that I think, "Gosh, I should write about this later," I either dictate it into my phone, "write about this later," or I write a little message to myself, "Make sure that you remember this experience and document it later." And I keep a little notebook in my pocket specifically to do that. Mikkael Sekeres: Well, it's really a fabulous, updated use of technology compared to when William Carlos Williams used to scribble lines of poetry on his prescription pad and put it in his rolltop desk. Megan Dupuis: Although I will admit, you know, I don't think I'm much different. I still do prefer often the little leather notebook in the pocket to dictating. It'll often be when I'm in the car driving home from a clinic day or whatever, and I'll go, "Oh, I have to write about this, and I can't forget." And I'll make myself a little digital reminder if I have to. But I still do keep the leather notebook as well for the more traditional type of writing experience. Mikkael Sekeres: I'm curious about what triggers you to dictate something or to scribble something down. Megan Dupuis: I think anything that gives me an emotional response, you know, anything that really says, "That was a little bit outside the normal clinical encounter for me." Something that strikes me as moving, meaningful—and it doesn't have to be sad. I think a lot of novice writers about medical writing think you have to write only the tragic or the sad stories. But as often as not, it'll be something incredibly funny or poignant that a patient said in clinic that will make me go, "Ah, I have to make sure I remember that for later." I think even surprise, you know? I think all of us can be surprised in a clinical encounter. Something a patient says or something a spouse will reflect on will make me sit back and say, "Hmm, that's not what I expected them to say. I should dive into why I'm surprised by that." Mikkael Sekeres: It's a great notion as a starting point: an emotional connection, a moment of surprise. And that it doesn't have to be sad, right? It can be- sometimes our patients are incredibly inspirational and have great insights. It's one of the marvelous things about the career we've chosen is that we get to learn from people from such a variety of backgrounds. Megan Dupuis: That's it. It's a privilege every day to be invited into people's most personal experiences, and not just the medical experience. You know, I say to my patients, "I think this cancer diagnosis is in some ways the least interesting thing about you. It's not something you pick. It's not a hobby you cultivate. It's not your family life. It's a thing that's happened to you." And so I really like to dive into: Who are these people? What makes them tick? What's important to them? My infusion nurses will say, "Oh, Dr. D, we love logging in and reading your social histories," because, yeah, I'll get the tobacco and alcohol history, or what have you. But I have a little dot phrase that I use for every new patient. It takes maybe the first five or six minutes of a visit, not long. But it's: Who are you? What's your preferred name? Who are your people? How far do you live from the clinic? What did you used to do for work if you're retired? If you're not retired, what do you do now? What are the names of your pets? What do you like to do in your spare time? What are you most proud of? So those are things that I ask at every new patient encounter. And I think it lays the foundation to understand who's this three-dimensional human being across from me, right? What were they like before this diagnosis changed the trajectory of where they were going? To me, that's the most important thing. Mikkael Sekeres: You've so wonderfully separated: The patient is not the diagnosis; it's a person. And the diagnosis is some component of that person. And it's the reason we're seeing each other, but it doesn't define that person. Megan Dupuis: That's right. We're crossing streams at a very tough point in their life. But there was so much that came before that. And in the piece that I wrote, you know, what is the language? What is the food? What is the family? What are all of those things, and how do they come together to make you the person that you are, for what's important to you in your life? And I think as oncologists, we're often trying to unravel in some way what is important. I could spend all day talking to you about PFS and OS for a specific drug combination, but is that really getting to meeting the goals of the patient and where they're at? I think it's easy to sort of say, "Well, this is the medicine that's going to get you the most overall survival." But does it acknowledge the fact that you are a musician who can't have neuropathy in your fingers if you still want to play? Right? So those things become incredibly important when we're deciding not just treatment planning, but also what is the time toxicity? You know, do you have the time and ability to come back and forth to clinic for weekly chemotherapy or what have you? So those things, to me, become incredibly important when I'm talking to a person sitting across from me. Mikkael Sekeres: Do your patients ever get surprised that you're asking such broad questions about their life instead of narrowing down to the focus of their cancer? Megan Dupuis: Sometimes. I will say, sometimes patients are almost so anxious, of course, with this new diagnosis, they want to get into it. You know, they don't want to sit there and tell me the name of the horses on their farm, right? They want to know, "What's the plan, doc?" So I acknowledge that, and I say to them in the beginning, "Hey, if you give me five minutes of your time to tell me who you are as a person, I promise this will come back around later when we start talking about the options for treatments for you." Most of the time, though, I think they're just happy to be asked who they are as a person. They're happy that I care. And I think all of us in oncology care—I think that's... you don't go into a field like this because you're not interested in the human experience, right? But they're happy that it's demonstrable that there is a... I'm literally saying, "What is the name of your dog? What is the name of your child who lives down the street? Who are your kids that live far away? You know, do you talk to them?" They want to share those things, and they want to be acknowledged. I think these diagnoses can be dehumanizing. And so to rehumanize somebody does not take as much time as we may think it does. Mikkael Sekeres: I 100% agree with you. And there can be a selfish aspect to it also. I think we're naturally curious people and want to know how other people have lived their lives and can live those lives vicariously through them. So I'm the sort of person who likes to do projects around the house. And I think, to the dismay of many a professional person, I consider myself an amateur electrician, plumber, and carpenter. Some of the projects are actually up to code, not all. But you get to learn how other people have lived their lives and how they made things. And that could be making something concrete, like an addition to their house, or it can be making a life. Megan Dupuis: Yeah, I love that you say that it is selfish, and we acknowledge that. You know, sometimes I think that we went into internal medicine and ultimately oncology... and I don't mean this in a trite way: I want the gossip about your life. I want the details. I want to dig into your hobbies, your relationships, what makes you angry, what makes you excited. I think they're the fun things to learn about folks. Again, in some ways, I think the cancer diagnosis is almost such a trite or banal part of who a human is. It's not to say that it's not going to shape their life in a very profound way, but it's not something they picked. It's something that happened to them. And so I'm much more excited to say, "Hey, what are your weekend hobbies? Are you an amateur electrician?" And that dovetails deeply into what kind of treatment might help you to do those things for longer. So I think it is a little bit selfish that it gives me a lot of satisfaction to get to know who people are. Mikkael Sekeres: So part of what we're talking about, indirectly, is the sense of otherness. And an undercurrent theme in your essay is otherness. You were an 'other' as a fellow in training and working in Texas when you grew up in upstate New York. And our patients are also 'others.' They're thrust into this often complicated bedlam of cancer care. Can you talk about how you felt as an 'other' and how that's affected your approach to your patients? Megan Dupuis: I think in the cancer experience, we are 'other,' definitionally, from the start, for exactly the reasons that you said. I'm coming to it as your physician; you're coming to it as my patient. This is a new encounter and a new experience for both of us. I think the added layer of being this person from upstate New York who didn't... I mean, I minored in Spanish in college, but that's not the same thing as growing up in a culture that speaks Spanish, that comes from a Spanish-speaking country—the food, the culture. It's all incredibly different. And so the way that I approached it there was to say, "I am genuinely curious. I want to know what it's like to be different than the culture that I was raised in." And I'm excited to know about that thing. And I think we can tell—I think, as humans—when somebody is genuinely curious about who you are and what's important to you, versus when they're kind of just checking the boxes to try to build a relationship that's necessary. I think my patients could tell that even though I'm not necessarily speaking their language, I want to know. I ask these questions because I want to know. I think if you go to it from a place of curiosity, if you are approaching another person with a genuine sense of curiosity... You know, Faith Fitzgerald wrote her most remarkable piece on curiosity many, many years ago. But even the quote-unquote "boring" patient, as she put it, can have an incredible story to tell if you're curious enough to ask. And so I think that no matter how different I might be culturally from the patient sitting across from me, if I approach it with a genuine sense of curiosity, and they can sense that, that. that's going to build the bond that we need truly to walk together on this cancer journey. I think it's curiosity, and I think it's also sharing of yourself. I think that nobody is going to open up to you if they feel that you are closed to sharing a bit of yourself. Patients want to know who their doctor is, too. So when I said I asked those five or six minutes' worth of questions at the beginning of a new patient encounter, I share that info with them. I tell them where I live, how long it takes for me to get to clinic, who my people are, the name of my dog, what I like to do in my spare time, what I'm proud of. So I share that with them too, so it doesn't feel like a one-way grilling. It feels like an introduction, a meeting, the start of a... I don't want to say friendship necessarily, but a start of a friendliness, of a shared communal experience. Mikkael Sekeres: Well, it's a start of a relationship. And you can define 'relationship' with a broad swath of definitions, right? Megan Dupuis: That's right. Mikkael Sekeres: It can be a relationship that is a friendship. It can be a relationship that's a professional relationship. And just like we know some personal things about some of our colleagues, the same is true of our patients. I was wondering if I could pick up on... I love that notion of curiosity that you brought out because that's something I've thought a lot about, and I've thought about whether it could be at least one way to combat burnout. So could you put that in context of burnout? Do you think maintaining that curiosity throughout a career is one potential solution to burnout? And do you think that being open with yourself also helps combat burnout, which is counterintuitive to what we've always been taught? Megan Dupuis: Wow. I think that this is such an important question, and it's almost like you read my justification for a Medical Humanities Certificate Program. One of the foundational arguments for why I thought the GME should support the creation of this program at Vanderbilt was because we hypothesized that it would improve burnout. And one of the arms of that is because it engenders a sense of genuine curiosity. When you're thinking about the arms of burnout: it's loss of meaning in your work; it's depersonalization of patients, right, when they're treated as objects or numbers or a ticket in the system that you have to shuffle through; when it's disconnection from the work that you do. I absolutely think that curiosity is an antidote to burnout. I don't think it's the whole solution, perhaps, because I think that burnout also includes systemic injury and structures of our medical healthcare system that no individual can fix in a vacuum. But I do think when we're thinking about what are the changes that we as individual physicians can make, I do think that being open and curious about your patient is one of the best salves that we have against some of these wounds. You know, I've never left a room where a patient has shared a personal story and felt worse about it, right? I've always felt better for the experience. And so I do think curiosity is an incredibly important piece of it. It's hard, I will acknowledge. It's hard for the speed that we move through the system, the pace that we move through the system. And I'm thinking often about my trainees—my residents, my fellows—who are seeing a lot, they're doing a lot, they are trying to learn and drink from the fire hose of the pace of medical development, checking so many boxes. And so to remain curious, I think at times can feel like a luxury. I think it's a luxury I have boomeranged back into as an attending. You know, certainly as a resident and a fellow, I felt like, "Gosh, why does this attending want to sit and chitchat about this person's music career? I'm just trying to make sure their pain is controlled. I'm trying to make sure they get admitted safely. I'm trying to make sure that they're getting the right treatment." And I think it's something that I've tried to teach my trainees: "No, we have the time. I promise we have the time to ask this person what their childhood was like," if that's something that is important to the narrative of their story. So it sometimes feels like a luxury. But I also think it's such a critical part of avoiding or mitigating the burnout that I know all of us face. Mikkael Sekeres: I think you touched on a lot of really important points. Burnout is so much more complicated than just one inciting factor and one solution. It's systemic. And I love also how you positioned curiosity as a bit of a luxury. We have to have the mental space to also be curious and engaged enough in our work that we can take interest in other people. I wanted to touch on one more question. You write in your essay that a patient in pajamas is a canary in the coal mine for deteriorating health. And I completely, completely agree with that. I can vividly recall a number of patients where I saw them in my clinic, and I would look down, and they had food spilled on their sweatshirt, or they were wearing mismatched socks, or their shoes weren't tied. And you thought to yourself, "Gee, this person is not thriving at home." Do you think telemedicine has affected our ability to recognize that in our patients? Megan Dupuis: Yes, I do think so. I can remember vividly being a fellow when COVID first began in 2020, and I was training in an environment where most of my patients spoke Spanish or Vietnamese. And so we were doing not just telemedicine; we were doing telephone call clearance for chemotherapy because a lot of the patients didn't have either access to the technology or a phone that had video capability. A lot of them had flip phones. And trying to clear somebody for chemotherapy over the phone, I'll tell you, Mikkael, was the number one way to lead to a recipe of moral injury and burnout. As a person who felt this deep responsibility to do something safe... I think even now with telemedicine, there are a lot of things that you can hide from the waist down, right? If you can get it together enough to maybe just put a shirt on, I won't know that you're sitting there in pajama bottoms. I won't know that you're struggling to stand or that you're using an assistive device to move when you used to be able to come into clinic without one, or that your family member is helping you negotiate stepping over the curb in clinic. These are real litmus tests that you and I, all of us, use when we're deciding whether somebody is safe to receive a treatment. And I think telemedicine does mask some of that. Now, on the other hand, does telemedicine provide an access point for patients that otherwise it would be a challenge to drive into clinic for routine visits and care? It does, and I think it's been an incredible boon for patients who live far away from the clinic. But I think we have to use it judiciously. And there are patients where I will say, "If you are not well enough to get yourself to clinic, I worry that you are not well enough to safely receive treatment." And when I'm thinking about the rules of chemo, it's three: It has to be effective, right? Cancer decides that. It has to be something the patient wants. They decide. But then the safety piece—that's my choice. That's my responsibility. And I can't always decide safety on a telemedicine call. Mikkael Sekeres: I completely agree. I've said to my patients before, "It's hard for me to assess you when I'm only seeing 40% of you." So we will often negotiate them having to withstand the traffic in Miami to come in so I can feel safe in administering the chemotherapy that I think they need. Megan Dupuis: That's exactly right. Mikkael Sekeres: Megan Dupuis, it has been an absolute delight getting to chat with you. It has been just terrific getting to know you and talk about your fabulous essay, "Tamales." So thank you so much for joining me. Megan Dupuis: Thank you for having me. It was a wonderful time to chat with you as well. 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 Megan Dupuis is an Assistant Professor of Hematology and Oncology at Vanderbilt University Medical Center.
Mar 25, 2025 • 17min
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.
Mar 13, 2025 • 24min
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.
Jan 28, 2025 • 21min
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.
Jan 14, 2025 • 20min
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.
Dec 10, 2024 • 30min
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.
Nov 26, 2024 • 21min
Episteme: Knowing Your Patient
Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "Episteme" by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease. TRANSCRIPT Narrator: Episteme, by Michael J. Slade, MD, MSCI I know you know, must know. The tides have woken you night after night after night, borrowed blood flowing in and now out, unaided by your dwindling marrow. You must know your story is read and written in a perfecta tense. You must know the end somewhere deep in your empty bones. Still, you speak of summers, of fish caught or lost beneath the calm surface of a distant lake. "There's nothing to do in December," you say, skin pale in the cool light leaking from the door. It's late now, deep in the evening and my knees ache as I nod and wonder about a different world where you were not you and this was all decided months ago. "Day by day," I mutter and shuffle to my next door, leaving you alone to wait on the cataclysm, on that night when the blood of strangers runs wild and catches your breath, that night in the ICU, where they wait, tube in hand as you sweat and shake, where I still promise to care for you knowing, knowing you will never wake again. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, "Episteme." Our guest's disclosures will be linked in the transcript. Mike, welcome to our podcast and thank you for joining us. Dr. Michael Slade: Thank you, Lidia. It's great to be here. Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write? Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers. Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone. Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works. Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients'? I assume the "I" is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of "I," but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well? Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, "Oh, the chances of you responding," "The chances of you surviving," "The chances of you being cured," it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing. Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice. Dr. Michael Slade" When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, "Am I going to be cured?" "Am I going to have this side effect?" "Am I going to make it out of the hospital?" And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful. Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know. Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, "I have seen this story play out so many times, and I know things are not going well. I know how this is going to end." But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap. Dr. Lidia Schapira: And you say it very clearly. You say, "You must know your story is read and written in the perfect tense." It's almost like you're shouting it here, right? Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, "What are you talking about?" I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end. Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, "they are coming up for air." They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right? Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, "Oh, I feel fine. Why do I need chemo after surgery?" Or, "Oh, I feel fine. Why do I need a bone marrow transplant?" And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, "Oh, man. If only we had done things a little bit differently." I acknowledge that we just can't align our views of the world, but still at the same time saying, "Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process." So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this. Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, "it's the evening and my knees ache," and then you say "I shuffle," suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms. Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, "Hey, I had a patient with a bad outcome when they got X,Y,Z." Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, "Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?" Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem. Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right? Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this. Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an 'us' that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there. And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word 'cataclysmic', which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the "They," which isn't you or your team, it's the 'they' are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while 'they' are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey? Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard. Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the 'knowing' and then italicize it at the end, just to add another dimension of emphasis there? Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it. Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that. Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is more beautiful than what I started with. So I have a lot of gratitude to folks who have given me some pointers about how to improve this. Dr. Lidia Schapira: It's lovely to hear you say that. To end this, I would love to hear you tell me a little bit about comments, perhaps, that colleagues or even patients may have made based on work that you've published or what you hope that people will take away from this. Dr. Michael Slade: I had published maybe one poem back in medical school, and then I published something as a fellow. And I remember in our program, we have this big office and we basically all have cubicles, and we have sort of the computers all set up, and we're in and out, you know, seeing consults and everything else. And I had published something in JCO a few years ago, that was about indirectly the experience of trying to be on call and triage patients and all this. I had maybe three or four different fellows within the week that that was published, sort of stick their head over and be like, "I never read poetry, but I saw your name on this. So I flipped to the back of the JCO magazine and read it." And that captured so many of the feelings that I've had this year in a way that I couldn't put on paper. Again, I've been writing stuff since college and most of it sits in a folder somewhere and it's never read by anybody. So the idea that it could go out into the world and could make people have that sort of sense of catharsis that I'm not alone in this. Somebody else has had this experience and had this feeling. I've had that same experience with some of my very brilliant colleagues who paint or who participate in other sorts of artistic endeavors. And it's nice to know that there's a community of people out here. We're all just trying to navigate the same stuff. And if we can sort of help each other, if we can capture these experiences and retranslate them in a way that people can process their own, sometimes, grief. I think it's really wonderful. Dr. Lidia Schapira: Yes. To create a thoughtful community and accompany one another. Well, thank you for sharing your art and your wisdom and your knowing with us today, and please keep writing. 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. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Michael Slade is a Medical Oncologist at Washington University School of Medicine.
Oct 22, 2024 • 21min
The Holiday Card: Processing the Unexpected Loss of a Patient
Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "The Holiday Card" by Dr. Laura Vater, who is a gastrointestinal oncologist at Indiana University Simon Comprehensive Cancer Center. The article is followed by an interview with Vater and host Dr. Lidia Schapira. Dr Vater shares how she processed the unexpected loss of a patient and how a colleague unknowingly helped her cope. TRANSCRIPT Narrator: The Holiday Card, by Laura B. Vater, MD, MPH I kept her family holiday card tucked into the side pocket of my black briefcase for a year and 3 months after she died. I carried it back and forth to the office each day, never viewing it but with a deep awareness of its presence. It was a transitional object, my therapist said. I took it with me for reasons that were not logical or even fully clear to me—perhaps part of me thought if I kept it in that dark space, then maybe her death was not real, after all. Death is not new to me. Much of my work as a GI oncologist is palliating my patient's symptoms and helping them navigate the end of life. But she was not supposed to die. She was a vibrant, kind person, and I was treating her for a potentially curable condition. A team was assembled, a tumor board discussion was held, and a comprehensive plan was derived from published clinical trials and national guidelines. She was on track to finish chemotherapy and recover. She was meant to have decades more with her husband and teenage children. This is what gnawed at me—death out of place. It was during a nap on a normal day, months into her treatment course. There were no proceeding symptoms or perceptible changes. The autopsy showed no apparent cause of death. Amid it all, her family was kind and expressed thanks. "She was grateful for your investment in her," they said. "She felt cared for." Rechanneling my distress, I rechecked the dose of every chemotherapy agent she received, along with each supportive medication. It was all per protocol, verified by pharmacy teams, and infused without adverse reactions. Yet, the questions remained. I continued to carry the weight of responsibility, along with the holiday card. In clinic the next week, I met a patient with the same diagnosis. Again, there was a multidisciplinary discussion, and we planned to give him the same drug regimen. After reviewing the more common side effects with him, a lump formed in my throat. "In exceedingly rare cases," I said, "cancer treatment may lead to death." My eyes began to water, and I pushed back the tears to answer his remaining questions. He completed the treatment and, over time, had no sign of recurrence. Many more patients followed with the same diagnosis and positive outcomes. And the card remained in the bag. Over a year later, a senior mentor and I had a shared patient with two malignancies. We carefully discussed and managed her care, but she unfortunately had a rapid clinical decline and was admitted to the intensive care unit. Her family elected for comfort care, and she died soon after. We saw each other in the hallway the following week. "Just awful, wasn't it?" he said. I exhaled and nodded. Perhaps he could see the invisible burden I carried, and he sighed. "We do the best we can with the data we have, but we're treating terrible diseases. Sometimes, bad things happen that we cannot predict or prevent. We did everything we could for her." Something deep inside me released in that moment. Often, mentors do not realize how healing their words can be—even brief ones shared in passing on a busy clinical day. Eventually, on a quiet afternoon at home, these words gave me the courage to reach into the side pocket of my work bag and remove the white envelope. My name was written and underlined in royal blue ink. Slowly opening the card, I saw once again a snapshot of life: a beaming family with arms around each other amid a blanket of paradise-green trees. They were huddled so close that there was no space between them. I imagined how she might have felt at that moment, the warmth of her children pressing on either side and the joy spreading across her face. Perhaps someone had told a joke just moments before. My face crumpled, and I began to sob. How badly I wanted to cure her, to restore her to health, to see her year after year for follow-up, and hear about her children's unfolding lives. And now, they were navigating the world without their mother. One of the most challenging aspects of practicing oncology is the uncertainty of it all. Even when the variables are the same—diagnosis, staging, and treatment—the outcomes are unpredictable. We, of course, know and rationally accept this as physicians. It is the nature of our work to care for diverse and varied human beings. But even so, when devastation occurs unexpectedly and without apparent reason, the toll of grief can be crushing. It is often the support we receive from one another that helps us heal. We must remind our mentees that despite our greatest efforts in a field of extensive data, unpredictable outcomes still happen. We will have questions that may never have answers. Our minds may try to cope with this randomness in ways that are not always logical. Our grief may linger like an open wound for months or even years to come. Caring words shaped by time and experience can help us process, cope, and continue on. I am not typically a person who holds onto holiday cards, but I have a tray in the bottom drawer of my home desk with about a dozen meaningful ones. This card now lives among them. I still often think about my patient and her family, and I even look at the card from time to time. However, it is no longer in that liminal space within the side compartment of my bag. It has become integrated into my life and remains part of me—her story forever interwoven with my own. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Laura Vater, a gastrointestinal oncologist at the Indiana University Simon Comprehensive Cancer center. In this episode, we'll be discussing her Art of Oncology article, "The Holiday Card." Our guest disclosures will be linked in the transcript. Laura, welcome to our podcast, and thank you for joining us. Dr. Laura Vater: Hi, Lidia. Thank you so much for having me today. Dr. Lidia Schapira: It's our pleasure. So let's start by just asking you a general question that I think our authors like to share with listeners. And that is, why do you write? When do you write? When did you start writing? Dr. Laura Vater: Yeah, so I started writing, actually, during my first few years of medical school as a way to process and cope through many of the challenges and the difficulties and the emotional ups and downs of training. When I was a third year medical student, I was pregnant, and I was rotating through the high risk maternal fetal medicine rotation, and I witnessed a stillborn child, and that child was about the same gestational age that I was pregnant at that time. And I thought about that family. Had they picked out a crib, and had they chosen the color of paint for their walls? And anticipating this life and having it end in this just grief. And participating in that ritual of loss really evoked a deep emotional chord in me that I remember walking out right after that shift was about 2:00 in the morning and it was freezing cold in February. As I was walking in the parking lot, I just started crying. And I thought, I need a way to process and cope with the challenges that I'm witnessing in my training that served me very well. I always journaled through medical school and residency as an internal medicine resident, as an oncology fellow, and now during my gastrointestinal oncology practice. And sometimes I go a week or two without journaling, sometimes I'm writing every day and it kind of depends on the week, but it is truly something that helps me process and cope. Dr. Lidia Schapira: So it's good to know that you are so comfortable with words and writing as a way of processing. But I'm curious to have you address the next layer, which is then to go back and turn it into a piece of art, turn it into a piece of writing that you want to share with others. Can you talk a little bit about that process and the role that's played in your professional development? Dr. Laura Vater: For a long time, writing was something very informal in my life, and then I started really enjoying spending time writing, and so I started participating in different writing groups. I participate in a Gold Humanism Writing Group with Judith Hannan. I did the Fall Narrative Medicine Workshop at Columbia, part of the Pegasus Physician Writers at Stanford University, where we meet every month to go over our writing. We've created a Writing for Wellness program on campus. And so this went from something very informal then something that I really was drawn to and loved, and that, really working with my peers, participating in writing prompts, reading both fiction, medical related nonfiction, and narrative stories, that's really crafted my ability as a writer to turn something that's just a reflection into something more, into something that I hope will help others. I think we all feel that way, right? If we share something that is perhaps a bit vulnerable, sometimes shrouded in shame, that perhaps it might help another trainee or early career physician through what they're going through. Dr. Lidia Schapira: Well, maybe you're the best person that I can think of to answer this question, but tell me a little bit about how you see this narrative in oncology and narrative medicine applied to practice to training. Dr. Laura Vater: I think that it's something that is necessary. It's something that helps me to pause, to slow down, to see the humanity in my patients, and also to hold on to my own humanity. And so it's truly something that allows me to continue to practice, and I hope to practice well through paying attention to the nuances of my patients and their stories. Sometimes, I'll be sitting in a room with a person, and I'll notice the color of their glasses, or I will be moved by something, a direct quote that they say. And I think that both reading narrative essays and writing helps me to slow down and to pay more attention. I think it helps, hopefully helps me to be a better clinician, but also allows me to have more meaning in what I do. Dr. Lidia Schapira: Yeah, perhaps even we can use the word 'joy'. It's more interesting if you're curious and open and you see these things. Can I ask you how you deal with the emotional labor and the emotional investment in your patients? You seem to be somebody who has no difficulty engaging at a very deep level. But how do you work that through and fit it into the rest of your life? Dr. Laura Vater: You know, it's interesting that you asked me that question, because over the last two weeks, that has been the question in my mind that I've been coming back to. I've been covering for a partner that's been out of town and another partner on maternity leave. And so I found that my clinical work has been a bit busier and that I've hit that point in my early career where I know my patients very well. But as a gastrointestinal oncologist, many of my patients, I'm walking through devastating recurrences of what we thought was curable pancreatic cancer is now stage 4. So I've found that even over the last two weeks, I had a few days last week where I came home after the clinic and I had nothing left in the tank. I have my husband and my eight year old daughter, and I just had a few days last week where I actually asked myself, I said, "How am I going to continue to do this work, both clinically, physically, intellectually, and emotionally exhausting days, right?" Our clinics can be all of those. Our clinical work can be all of those. And so I actually took some time over the weekend. I've been intentional for a very long time about how can I connect with patients deeply to know them as human beings, help them to walk through really awful things, but then be able to have both health and wellbeing and joy in my own life. Because I think we deserve that. We deserve the health that we strive so hard to give to others. It's something that I'm still processing through. Things that help me cope? Of course, I regularly go to therapy. I think that really helps because I have a lot of patients who do pass from their cancers. And I also write. Writing is a tool that I come to, and sometimes it's even writing, "I'm emotionally exhausted today. And this and this, and this happened." And sometimes it's being in nature, sometimes it's listening to music, sometimes it's just doing nothing. Reading a book I've read before or watching a show I've read before. But I keep coming back to this idea of, there's this thought of we all develop some emotional calluses. The things that evoke emotion in us when we are first learning medicine, when we're medical students, are not the same things that may evoke emotion in us as we progress through our careers. For me now, it's often a person that I have a deep connection with that I've known over time. And in that moment when something really devastating happens, I'm finding that that is probably the most emotionally difficult thing, especially if that person is particularly young or has young children. And so I'm increasingly trying to find ways to cope with that, because we need to do that to protect our longevity, to be able to do this work. Dr. Lidia Schapira: Yeah. And to stay fresh for our patients as well. I think that we are a culture that is immersed in grief, and we volunteered for this work. But I think we volunteered perhaps when we didn't quite understand all of the areas that this grief and the sorrow and this immersion into that culture can really deeply penetrate. It sounds like you have used all of the possible resources, and you're incredibly open and frank about it. I wonder if in your institution, people talk about it as frankly as you do. Dr. Laura Vater: I have had mentors who have talked with me. I have the benefit of being trained through residency and fellowship at the same institution where I work. So I've known some of my mentors for almost 10 years, more than that. And so sometimes I will ask them, "How do you cope with this?" Some of my peers are incredibly funny and, not in a- sometimes sarcastic, yes, but not in a demeaning way towards patients, but they just bring a lightness to the clinic. Especially in the world of gastrointestinal oncology, where a mentor once told me that eight out of ten of my patients will not live long term. And so a lot of what I do is palliative care and end of life care. And I think we knew that. Like you said, we know what we sign up for. But sometimes the reality of that can be much, much different than that. I do reach out to my mentors. I try not to burden them. But sometimes if we're in a clinic and I notice that we have a down moment, I might say, "Wow, I'm dealing with this." And they'll sometimes share an experience from their early career or even recent and I think that's healing. There is something about being vulnerable with your peers, whether that's through writing and formally publishing a story and reading a story of someone you've never met, or even in those moments in the clinic or in the hospital where you share something with your residency team or your colleague that can be very healing. Dr. Lidia Schapira: And even being able to open yourself up and be vulnerable together, or cry with somebody, or cry reading somebody else's story. There are some essays that have been published in The Art of Oncology that make me cry every single time I read them. And it's a way of feeling that I'm sort of in solidarity with a colleague's pain, or that I feel sort of understood, or that I have a community of peers, people who are also drawn to these very tense, emotionally intense situations, but find meaning in it and find meaning and keep going back to it on a very intentional basis. And I think you're probably one of the club. So let's talk a little bit about your essay, this beautiful essay about this holiday card that you kept tucked in your briefcase until it was the right moment when you could process something that was deeply, deeply painful to you because it was a death that was out of place, that wasn't supposed to happen. Tell us a little bit about how this became a story for you. Dr. Laura Vater: I still remember the moment that I woke up to an email from this patient's husband, unfolding that this patient had unexpectedly died the night before. And that was the first email that I read that morning. It was early, and I remember pacing in my office until it was late enough that I could call him. And, of course, then came all of the questions and all of the uncertainty and unfortunately, without answers ever being found. And just like before, when I was a medical student, I needed somewhere for this to go. I needed somewhere for this to go. And so this became even that day, journaling about this experience, in a way, of course, that protected my patient's identity. And as things unfolded over the next few months, I kind of came back to the same word document. And just anything that came into my mind as I was processing through this went there because I knew it needed a safe place to go. And then months later, this was something I talked about through therapy over many, many months, actually, and then eventually to this encounter I had with this mentor who provided very healing words in a moment when he had no idea that I was processing all of this about a different patient. And how that eventually led me to be able to pull the card from my bag and really grieve, really allow myself to grieve in that moment. You don't stop grieving, but it helps you to find a healthy way to process through something very difficult and be able to cope and continue on and hopefully share with others that these things we go through in medicine, we're not isolated in our experience. You're not alone in what you go through when something like this happens early in your career. These are normal things that you're going to think, and it may take months or even years to process through. Dr. Lidia Schapira: Yeah, I think the healing intention of your mentor's words or of a senior colleague or somebody just willing to sort of stand with you or be with you and share that is something that is so incredibly valuable. Maybe some of our listeners can think of moments where somebody has been there for them or where they have been there for somebody else. Laura, I think that there's one or two books there hidden in your files. Maybe that's next. I mean, just the evolution of the process and the formation of your professional identity, your clinical persona, and the intention and attention you bring to the work. Is there a book in the making? Dr. Laura Vater: Thank you, Lidia. That's very kind of you. I'm hopeful that at some point there may be a nonfiction book. I didn't share this with you yet, but I also write fiction. I've actually completed one novel, and I'm working on my second novel. Writing has become something that I never anticipated myself spending much of my time doing in my non clinical space, but much of what my fiction writing is really about the mental health of clinicians and well being, and also many of these challenges that we face. And so hopefully more to come in the next few years with those, yes. Dr. Lidia Schapira: Yeah. I look forward to another conversation and to reading more of your work. Laura, this has been a lovely conversation. Thank you. Dr. Laura Vater: Thank you, Lidia. Dr. Lidia Schapira: And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at 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. Laura Vater is a gastrointestinal oncologist at the Indiana University Simon Comprehensive Cancer Center.
Sep 30, 2024 • 17min
Rain Talk: Finding Words of Comfort at the Bedside
Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "Rain Talk" by Dr. Karl Lorenz, who is a palliative care and primary care physician and Professor of Medicine at Stanford University. The poem is followed by an interview with Lorenz and host Dr. Lidia Schapira. TRANSCRIPT Narrator: Rain Talk, by Karl A. Lorenz, MD, MSHS Rain splattering, a cacophony of glassy dollops plopping, sliding, colliding, crashing, plashing melted pearls. Drops careening, onto the ground now streaming, seeking, trickling, slowing, flowing into a rill of connections. Water nourishing blades of grass becomes a field of forage, or the smallest sprout of a redwood fairy circle. Life springs forth from the pitter patter, as words too, joined in thoughts, converge, merge, spill, flow into action. You lay cancerous, stoically shrouded. I stood frozen, purged of words, anxious amid the pulse, beep, thrum, dry rustle of nurses' coming and going. A stiff-coated doctor fractured the quiet— "I wish things were different." Her words fell stinging. Fighting soul ache, I gripped your shoulder. Grimacing, muffling sobs, as gasps, a gurgling cry, erupted into a torrent of tears clouding sight. Reaching, we grasped hand over wrist over hand. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Karl Lorenz, a palliative care and primary care physician and a Professor of Medicine at Stanford University. In this episode, we will be discussing his Art of Oncology poem "Rain Talk". At the time of this recording, our guest has no disclosures. Karl, welcome to our podcast, and thank you for joining us. Dr. Karl Lorenz: Thank you for inviting me. It's such a pleasure. Dr. Lidia Schapira: I'd like to start by asking you a broad question about the role of literature and poetry in your career as a physician, educator, and palliative care physician. Tell us a little bit about the history and trajectory of your participation in the arts. Dr. Karl Lorenz: Yeah, thank you. Well, arts have had varied expressions in my life. I was a musician for many years, and I'd like to mention that because there's so many similarities between the types of art and overlap, and I think, what they teach us and how they engage us. But I was an instrumental musician for a long time, and then actually I studied opera and sang choral music in Los Angeles, which was really wonderful. I became a writer, I guess at some point. I was an English major as an undergrad. And the funny thing is I was an English major because I thought, "Oh, you know, I want to be a doctor. I'm not going to get to do this again." And of course, that turned out not to be true, but it also was a portal, I think, into the emotional and meaning based motivations that I had for entering medicine anyway, which is an interesting place to start, right? And thinking about what drives us toward medicine, but also what sustains us. And in the time after entering medical school, I've had a bit of a drought with regard to writing. I wish that I had had more mentoring when I was actually studying medicine and training, but you're just scrambling to live during those years. Afterwards however, those experiences were so powerful that I did find myself scribbling from time to time, not necessarily constructively. And over the years, I learned that maybe I could do a little bit more with that. Dr. Lidia Schapira: So tell us a little bit about the origin of this beautiful poem. Is it something that you scribbled in response to a particular event and then came back to months or years later? How does this emerge? Dr. Karl Lorenz: So I've always aspired, or at least in recent years, especially aspired, to be more of a writer. Writing is such a craft, but for me, because I haven't treated it as such, I find myself writing under circumstances that are more emotional or spontaneous. I don't say that with any pride. It's just the truth. I think those things are a font of inspiration for writers in general, but certainly it's also a craft. So for me, I was standing on the porch of our house in North Carolina in the middle of an incredible downpour. But it was atypical in that the sun was shining at the same time, and it was such a beautiful sight. I found myself taking pictures of the water dripping off of the bushes and the eaves of the house above a lake. And just the emotions sort of welled up in me, and I wanted to capture that. So I started writing, and this poem sort of spilled out, not in this form, actually, it was quite a bit different, but I was capturing the sensory experience of standing in that rainstorm protected under the porch. And that's actually where some of the onomatopoeia comes from. The words and their collision, at least in the first stanza, were very much about what I was experiencing standing under that porch in the rain. Dr. Lidia Schapira: They're very powerful, and rain is such an amazing metaphor. So before having me tell you what this said to me as a reader, why don't I go and ask you about bringing rain and water as a metaphor into what seems to me, reading this, a very intimate experience at the bedside, where you, the narrator, or where the narrator is really the loved one of the patient lying on the bed. Tell me, did I get that sort of right? Dr. Karl Lorenz: I'm sure you've had many of those experiences, Lidia. And, yeah, the rain is a good invitation for that, right? It does bring life. I think that was part of the emotion I was experiencing into the eaves just to see it coming off of those green leaves on those plants or just that particular place where this cabin sits is actually technically a rainforest, western North Carolina, up in the Appalachians. And so it's just, it's lush, it's fecund, if I could use that word. It's bursting with life all the time. And so that conjunction is really so much what the metaphor was about for me at the time. And then the sounds themselves are physically confluent. And so I think that's where language emerged as the vehicle for metaphor, because for me, those things have been so much characteristics of conversation and communication. Dr. Lidia Schapira: To go back to rain as water, I mean, we think of water as something that just flows through our fingers. And then you contrast that with a tempo, the force, the splashing, the colliding of the rain droplets. But it's all very life affirming. And again, I want to contrast that with what you're telling us later, which is water sort of as tears emerging in response to something that clearly is very devastating for the narrator and brings forth and evokes the grief about the anticipated loss. Tell us about mixing these things together. Again, I'm just filtering through my imagination as a reader, which is something that poetry gifts us, right? It helps us just create in our own minds the scene. But I wonder if you, as the poet, can tell us what you intended. Dr. Karl Lorenz: I think those tears are a sign of pain, but aren't they also life giving? I mean, it's when we acknowledge loss that it becomes real, and then we can do something about it. And I guess as a palliative care doctor, that's always the place that I want to take patients to, not because I want them to lose. They're not going to lose because of me. It's actually when we acknowledge loss that we win in a sense, because then we can respond in a way that is life giving out of that loss, which we can't avoid most of the time. Sometimes we can, and we make wrong judgments about that. But many times I see it work the other way, that we don't come to terms with loss. Then we miss those opportunities to express love, to experience forgiveness, to build or renew, invigorate relationships, to make memories, to leave legacy, etc. And so those tears really are life giving in the sense that they are a place of acknowledgement where that kind of life begins. Dr. Lidia Schapira: I wonder also a little bit about your perspective here as a narrator. I see you more as the doctor who is at the bedside empathically saying, "I wish things were different." And yet here the narrator is not the doctor. So it's not seen through the eyes or the lens of the palliative care clinician or the oncologist or critical care doctor, that it is from the person at the side of, or the loved one of the patient who is on the bed stoically shrouded, as you say. Tell us a little bit more about your choice of that perspective for your narrator here. Dr. Karl Lorenz: Oh, that's interesting. I don't know that I've thought about that myself. I guess I've had losses in my own life. And that's a really interesting point that you make. I guess maybe in writing the poem, I saw myself as kind of standing in the corner of the room with somebody that I love. No, that's interesting. I don't think it was conscious, actually, until you asked that question that I saw myself in the room as a narrator. I suppose it comes because of the fact that this is a poem that's rooted in personal experience. Yeah, I have been in the doctor's role many times. I've also been in the family role. And so I have seen it both ways. Dr. Lidia Schapira: And I would say that to me as a reader, it also was an active empathic imagination, because one of the things that empathy involves is sort of really taking the perspective, imagining we are in somebody else's shoes. So here I thought it was very beautiful when you talk about soul ache, fighting soul ache, I gripped your shoulder, and then it is the grasp hand over wrist over hand. So there's the visual of the bodies coming together in an embrace. Was that based on a scene you imagined, or again, did it just kind of pour out of you almost like the rain poured onto the porch on that day? Dr. Karl Lorenz: I'm a very touching person in the sense of I hug, I grasp, I hold. Touch has always been a tool that we use in medicine. I think it's one that we should be both cautious about, but also not overly cautious about. I think it's just a human expression and it's important, right? And so I have been touched physically in ways that are so profound and meaningful, and I think sometimes I have given touch in a way that is also in that regard. And so it's really just a human experience. Touch. Yeah. I guess this poem is about these different ways that we make those profound connections. It's a different form of communication. Dr. Lidia Schapira: It's an incredibly sensory poem. At least it was for me, because between the touch at the end and the last stanza and the sound, you really are engaging the reader in incredibly profound ways. There's a lot of vitality for me in this poem. It's just beautiful. And again, the sound of the rain that I think of as water, an element that flows, but producing such a crashing, loud noise. And then this encounter in what may be an ICU or a hospital ward. I mean, it clearly is a medicalized setting, right. With so much drama, it is really very beautiful. Tell me a little bit about how you plan to use this poem in your art as a clinician, as a teacher of young clinicians, or perhaps as a colleague. I find this very beautiful piece, and I wonder what your intended use is. Dr. Karl Lorenz: Oh, boy, that's a great question. The funny thing is, I think I have used art and poetry and film in medical teaching in the past. Now so much of what I do is more cerebral, health services research. Of course, I still do clinical teaching. We find ourselves so busy and distracted. I would love to use this in teaching. I haven't actually thought about using my own poetry or writings in teaching, but yeah, this is probably a good one to try that with. I love Akira Kurosawa. I've used Kurosawa films about perspective and actually culture and its role in medicine. And I definitely have toyed with a lot of these modalities, but using my own art or poetry in this case, that's sort of scary. I guess I could do it. Dr. Lidia Schapira: I think you can. And I have a final question, which I feel compelled to ask as a host for this particular podcast, and that is that once you had this poem and decided to share it with the world and publish it, why did you choose an oncology readership for your poem? Can you talk a little bit more about why this is perhaps important to put in an oncology journal that has built its reputation on delivering sort of the best science in the field? I certainly have been outspoken about the importance of having this sort of little space for the soul of our colleagues and our readers and our investigators. But I wonder if it was intentional that you said, "This is something either I'm gifting this to you guys," or "This is something that you need. You need to remember all of the tears and the love and the soul searching that accompanies being that patient in the bed." Dr. Karl Lorenz: Well, I love JCO and the oncology community and how my colleagues are working to refine the science and the excellence of clinical care. Yes, there is a science of the soul and a science of communication and a science of caring, and I think our patients want us to practice in an elevated way across all these dimensions of what they need. And I think that's maybe the reminder or the embrace. We can't do one without the other. And I do mean that we shouldn't do the art without the science or the science without the art. And so I love that marriage about medicine, and I love that marriage about the practice of oncology. What better place for it to be? A poem that captures that in the spirit of one of the hardest moments in our encounter with patients should go in a place where it's understood. Dr. Lidia Schapira: Well, thank you, Karl. Is there any final message that you want to convey? Or is there something that I haven't asked you that you'd like to talk about before we close? Dr. Karl Lorenz: Maybe I just express gratitude. So often we write and we just don't know that we have an audience. I feel that way. And so to know that it connected with you or with other readers is just such a pleasure, because I think we write, and maybe it's healing for us in a way, but it's also healing for us to know that it's healing for others. So, thank you. Dr. Lidia Schapira: What a lovely way to end this idea of community, and I think that's one of the intentions that we have through this podcast, also of connecting people to others and helping us all reflect together and feel accompanied by colleagues. So, thank you for sending this to JCO. And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at 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 individuals' individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Karl Lorenz MD, MSHS is a palliative care and primary care physician and Professor of Medicine at Stanford University.
Sep 10, 2024 • 32min
Just Humor Me: Laughter in the Cancer Clinic
Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "Just Humor Me" by Dr. Stacey Hubay, who is a Medical Oncologist at the Grand River Regional Cancer Center. The essay is followed by an interview with Hubay and host Dr. Lidia Schapira. Dr Hubay share how even though cancer isn't funny, a cancer clinic can sometimes be a surprisingly funny place. TRANSCRIPT Narrator: Just Humor Me, by Stacey A. Hubay, MD, MHSc Most of the people who read this journal will know the feeling. You are lurking at the back of a school function or perhaps you are making small talk with your dental hygienist when the dreaded question comes up—"So what kind of work do you do?" I usually give a vague answer along the lines of "I work at the hospital" to avoid the more specific response, which is that I am an oncologist. I have found this information to be a surefire conversational grenade, which typically elicits some sort of variation on "wow, that must be so depressing" although one time I did get the response "Great! I'm a lawyer and a hypochondriac, mind if I ask you some questions?" After I recently dodged the question yet again, I found myself wondering why I am so reticent about telling people what I do. While discussing work with strangers in our hard earned free time is something many people wish to avoid, I think for me a significant motive for this urge to hide is that I do not actually find the cancer clinic to be an overwhelmingly depressing place. Admitting this to others who are not engaged in this work can lead to at the very least bafflement and at worst offense to those who believe that laughing while looking after cancer patients is a sign of callousness. I am an oncologist who laughs in my clinic every day. Of course, the oncology clinic is sometimes a bleak place to work. Cancer has earned its reputation as a fearsome foe, and the patients I see in my clinic are often paying a heavy toll, both physically and emotionally. Many are grappling with their own mortality, and even those with potentially curable cancers face months of challenging treatment and the torture of uncertainty. Yet somehow, perhaps inevitably, the cancer clinic is not just a place of sadness and tears but also a place of hope and laughter. Although most of us recognize humor and use it to varying degrees, few of us consider it as an academic subject. A few lucky souls in academia have taken on the task of developing theories of humor, which attempt to explain what humor is, what purpose it has, and what social function it serves. Although there are almost as many theories of humor as there are aspiring comedians, most explanations fall into one of three categories: relief theory, superiority theory, and incongruous juxtaposition theory.1 Relief theory holds that people laugh to relieve psychological tension caused by fear or nervousness. I suspect this is the most common type of humor seen in a cancer clinic given the weight of fear and nervousness in such a fraught environment. The second category, people being what we are, asserts that sometimes we laugh out of a feeling of superiority to others. It goes without saying that this sort of humor has no place in the clinician patient interaction. Finally, we laugh at absurdity, or as Kant put it, at "the sudden transformation of a strained expectation into nothing."2 This last category is also surprisingly fruitful in the oncology setting. Laughter in the cancer clinic is still to some extent considered taboo. Near the start of my oncology training, I remember laughing until my stomach hurt with my attending staff in the clinic workspace between seeing patients. What we were laughing about escapes me now, but what I do clearly recall is an administrator in a buttoned-up suit striding over to us in high dudgeon. "Don't you people realize this is a cancer clinic?" she admonished us. "This is not a place for laughter!," she added before striding off, no doubt to a management meeting or some other place where the policy on laughter is more liberal. At this point, my attending and I looked at each other for a beat and then burst into helpless gales of laughter. We do not tend to think all that much about why we are laughing at something, but looking back now, I think at least part of the reason was the absurdity of a person so unfamiliar with the culture of the cancer clinic presuming that physicians and nurses somehow park their sense of humor when they arrive at work and turn into a herd of gloomy Eeyores. We oncologists are starting to come clean about the fact that we laugh in the clinic and there is now a modest amount of work in the medical literature addressing the use of humor in oncology. One survey of patients undergoing radiotherapy in Ottawa found that a stunning 86% of patients felt that laughter was somewhat or very important to their care, whereas 79% felt that humor decreased their level of anxiety about their diagnosis.3 If we had a drug that decreased anxiety levels in 79% of patients, had minimal to no side effects when used correctly, and cost the health care system zero dollars, should not we be using it? Sometimes, it is the patient or their family member who introduces an element of humor into an interaction as on one occasion when my patient was filling out a pain survey which included a diagram of the body on which he was asked to circle any areas where he was having pain. As his wife ran through a detailed list of his bowel habits over the past few days, the patient circled the gluteal area on the diagram he was holding, pointed to his wife and said "I've been suffering from a pain in my ass doctor." His wife looked at him pointedly for a moment before the two of them started laughing and I joined in. Sometimes, a patient's use of humor serves to level the playing field. Patients with Cancer are vulnerable, and the physician is an authority figure, meting out judgments from on high. My patient from a few years ago was having none of that. I met him when he was referred to me with widely metastatic lung cancer, a diagnosis typically associated with a dismal prognosis. The patient, however, was not buying into any of the usual gloom and doom that is customary for these interactions. As his daughter translated the information I was providing, he tilted his chin down, fixed his gaze on me, and proceeded to smile at me in a disarmingly friendly way while simultaneously waggling his generous eyebrows up and down throughout the interview. Over the course of 45 min, I became increasingly disconcerted by his behavior until eventually, I was unable to finish a sentence without sputtering with laughter. If you think you would have done better, then you have clearly never been on the losing end of a staring contest. By the end of the interview, all three of us had happily abandoned any hope of behaving with more decorum. Laughter and the use of humor require a certain letting down of one's guard, and the fact that all three of us were able to laugh together in this interview took me down from any pedestal onto which I might have inadvertently clambered. One study from the Netherlands noted that patients used humor to broach difficult topics and downplay challenges they faced and concluded that "Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making."4 Although it could be a coincidence, it is worth noting that several years after meeting this patient, I discharged him from my practice because he had somehow been cured of lung cancer. Perhaps laughter really is the best medicine. On other occasions, it might be the physician who takes the plunge and uses humor during a clinical encounter. The same Dutch study by Buiting et al noted that 97% of all specialists used humor in their interactions and all reported laughing during consultations at least occasionally. One of my colleagues, a generally serious sort whose smiles in clinic are as rare as a total eclipse albeit not as predictable, managed to win over his patient with a rare outburst of humor. During their first meeting, the patient listed off the numerous ailments he had experienced in the past including his fourth bout with cancer which had prompted this appointment. As he finished reciting his epic medical history, my colleague looked at him somberly over the rim of his glasses for a moment and asked "Sir, I must ask—who on earth did you piss off?" The patient was so tickled by this interaction that he recounted it to me when I saw him a few weeks later while filling in for my colleague. Although humor is a powerful tool in the clinic, it is of course not something that comes naturally to all of us. Attempts at humor by a clinician at the wrong time or with the wrong patient do not just fall flat but can even be damaging to the physician-patient relationship. Even if a physician uses humor with the best of intentions, there is always the possibility that they will be perceived by the patient as making light of their situation. As Proyer and Rodden5 point out, tact is essential and humor and laughter are not always enjoyable to all people, or to borrow a phrase frequently used by one of my patients, "about as welcome as a fart in a spacesuit." Socalled gelotophobes have a heightened fear of being laughed at, and with them, humor and especially laughter must be wielded with great care if at all. All I can say in response to the legitimate concern about the use of humor being misconstrued is that as with any other powerful tool physicians learn to use, one improves with time. As far as PubMed knows, there are no courses in medical faculties devoted to the fine art of the pun or the knock-knock joke. But even if we physicians cannot all reliably be funny on command, perhaps there is something to be said for occasionally being a little less self-serious. One must also be mindful of patients with whom one is not directly interacting—to a patient who has just received bad news, overhearing the sound of laughter in the clinic corridor has the potential to come across as insensitive. Moments of levity are therefore best confined to a private space such as the examination room in which physicians and patients can indulge in anything from a giggle to a guffaw without running the risk of distressing others. The final reason I submit in support of laughing in a cancer clinic is admittedly a selfish one. While humor has been shown to have the potential to reduce burnout,6 the real reason I laugh with patients in my clinic is because it brings me joy. The people at parties who think my job must be depressing are not entirely wrong. I have noticed that when I have a positive interaction with a patient based on humor or laugh with a colleague about something during a meeting, I feel better. Surprise! As it turns out, this is not just an anecdotal observation. In 2022, a study was published whose title was "Adaptive and maladaptive humor styles are closely associated with burnout and professional fulfillment in members of the Society of Gynecologic Oncology."7 The SGO has not to my knowledge been widely recognized up to this point for their sense of humor, but I have a feeling that might change. Humor is an essential part of the way I approach many situations, and given that I spend the majority of my waking hours at work, it is neither possible nor I would argue desirable for me to leave that part of myself at the entrance to the cancer center. So to the administrator who admonished my mentor and me to cease and desist laughing in the cancer clinic, I respectfully decline. My patients, my colleagues, and I will continue to laugh together at any opportunity we get. Joy in one's work is the ultimate defense against burnout, and I for one intend to take full advantage of it. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Stacey Hubay, Medical Oncologist at the Grand River Regional Cancer Center. In this episode, we will be discussing her Art of Oncology article, "Just Humor Me." Our guest disclosures will be linked in the transcript. Stacey, welcome to our podcast, and thank you for joining us. Dr. Stacey Hubay: Thank you for having me. It's a pleasure to be here. Dr. Lidia Schapira: It is our pleasure. So let's start by chatting a little bit about what humor means to you and what led you to write this piece and share it with your colleagues. Dr. Stacey Hubay: I didn't realize how important humor was to me until recently. I just finished a Masters in Bioethics, which was 20 years in the making, and this was the first time I'd been writing anything that wasn't a case report for many, many years. And there was actually specifically a course called "Writing in Bioethics," and this was the first thing that came to my mind. And I realized sort of how much humor there is in my day to day work life, which, because none of the other people in this bioethics class of 10 or 14 people were working in oncology, they were surprised. So I thought it would be interesting to write about that. And then when I started thinking about it, I realized how integral it is to most of, I guess not just my practice life, but the way I deal with life. And then I could see a thread going back all the way to the beginning of my practice in oncology, and I'm like, "I should write about this." And I don't think it's unique to me either. I think it's probably many of us in this field. Dr. Lidia Schapira: It is. So let's talk a little bit about humor in the practice of such a serious specialty as we tend to think, or people tend to think of, as in oncology. You talk about humor also connecting you with joy and practice, can you tell us a little bit more about that? Dr. Stacey Hubay: I'm just as surprised, probably as anybody, at least when I first went into this field, which is now more than 20 years ago, how much happiness I found in the field. I meant what I said in the beginning of this essay. When I run into people or strangers, you're getting your hair cut or you're at your kid's volleyball practice, and people always say, "Oh, so what do you do?" And I always say, "I'm in healthcare." And if they start drilling down, eventually I have to admit what I do. And I say, "I'm an oncologist." And immediately the long faces and people say, "That must be so terrible." And I'm like, "Well, it can be, but it's not as bad as you might think." And they're like, "Oh, it must be very difficult." And I know that avenue of conversation is closed once or twice. I think I did try saying, "You know what? I have a surprising amount of fun in my clinic with my patients." And they were aghast, I think is the word I would use. And it made me realize sort of what a taboo it is for many people, including maybe some of us in the field, to admit that we sometimes enjoy ourselves with our patients in our clinics. Dr. Lidia Schapira: So let's talk about that. Let's talk about joy, and then from there to laugh. I think the reason why laughter seems sort of stranger than joy is laughter assumes that we see some levity, humor. And some people would say, there's really nothing funny about having humor. And yet you seem to see it and find it and share it with your patients. So take us into your exam rooms and tell us a little bit more about your process. Dr. Stacey Hubay: It's funny, when I think about the humor in my clinics, I don't see myself as the one who's necessarily sort of starting it, although maybe sometimes I do. I think perhaps it's just that I'm more open to it. And I think it's frequently the patients who bring it in with them. Obviously, we know patients in the oncology clinic, they're often very nervous. It's a very anxious time for them. And we are in a position of power compared to our patients, they're very vulnerable. And so sometimes the patient makes a joke, sometimes I wonder if it's a way of testing if that kind of relationship will work with you. They're kind of testing you to see if you will respond to that. And it's also a way of them relieving their own anxiety, because one of the theories about humor is just a way of alleviating tension. It makes sense that oncology is a place where humor would be welcome, because it's one of the most tense places, I think, in medical practice, although I'm not sure it's present in other places like at the ICU. So the patient often brings it in, and then you respond to it, and if you're on the same wavelength, it sort of immediately establishes this kind of trust between you and the patient. It's not something you can do with everybody. Sometimes some people will not be open to that at any time. And some patients, you have to get to know them quite a bit before that starts to come into the mix. But I find with most people, if you follow them for long enough and you have a good working, therapeutic relationship with them, just like you would the people you like, your friends, your family, that comes into a relationship almost unavoidably. And I used to think, "Oh, I'm not supposed to do that," when I first came into practice. I'm a serious oncologist, which I am, and I can be a serious oncologist. And I also just didn't have the bandwidth for it. I think I was so kind of focused on, I have to know what I'm doing. Early in my practice, I didn't have the mental energy to devote to that. And then as that part became easier, I became kind of more open, I think, to that, coming into the interactions with my patients. And over time, I started realizing that was probably what I enjoyed the most about my working day. At the end of the day, I'd come home and tell stories, and my kids would be like, "It sounds like you have fun at work." And I go, "You know? I really do. Surprisingly I do." Dr. Lidia Schapira: That's so very cool. I think there's so much wisdom in what you just told us, which is that at the beginning, especially when in the first few years of your practice, you really are so focused on being clinically competent that you may be just very nervous about trying anything. And then as you relax, you actually say in your essay that for some people, this may bring relief and may level the playing field. So if there is an opportunity and you're loose enough to find it, you may be able to keep that conversation going. It made me wonder, I don't know if you've had any experience yourself as a patient or accompanying a family member as a caregiver to a medical visit. Have you used humor when you are the patient or when you're accompanying the patient? Dr. Stacey Hubay: That's an interesting question. I haven't been a patient apart from my routine family medicine visits for quite a long time. But when I was much younger, I was a teenager, I did have that experience. I was maybe 15 or 16. I had some parathyroid issues. And I remember seeing these specialists in Toronto, and they were very serious people. I remember thinking, if I want to become a physician, because it was at the back of my mind at that time, I'm going to be a lot more fun than these people. I'm going to enjoy myself a lot more. And little did I realize how difficult that actually was at the time. But I found them kind of very serious and a little bit intimidating as a 15-year-old kid. I hadn't reflected on that before. I'm not sure if that's something that I'm deliberately pushing back against. I think now if I see a physician as a patient, I probably am much more willing to bring that in if the physician is open to it. But you can usually tell many physicians, you meet them and you're like, "You're not going to even try that kind of thing." But if they're open to it, I think it would bring me much more fun as a patient as well. Dr. Lidia Schapira: Yeah. Do you teach your students or trainees or members of your team to use humor? Dr. Stacey Hubay: That's a very interesting question. How do you do that? So I mentioned, I just finished this Masters of Bioethics, and one of the excellent courses in it was how to teach bioethics, which really was a course about how to teach anything. And most of us who are in medicine, we've spent a lot of time teaching without being taught how to teach. In my own practice of teaching, we mostly use one on one with people coming into our clinics and seeing patients with us. And I think mostly some of it's through observation. I will say to people who work with me that we all have to find our own style. It's important, no matter what your style is, to try and connect with patients, because you're trying to create a therapeutic alliance. You're on the same side. The way that works for me is you don't laugh with people you don't trust. When you're trying to make a plan with people in these difficult situations, I think if you've already formed this alliance where they realize you're with them, they're more likely to believe you and trust your recommendations. I tell trainees, I'd say, "This is my way of doing it. And if it works for you, that's wonderful." But I can see that for some people it's difficult. Although even the most serious clinicians, one of my very good friends and colleagues who I mentioned in my essay and I talked about, he doesn't make a lot of jokes with his patients, which is perfectly reasonable, but the occasional time he does, the patients were so struck by it because they knew him as such a serious person. They bring it up, "Remember that time my doctor said this," and they thought it was a wonderful thing. So it's difficult to teach. It's just how would the Marx Brothers teach someone else to be the Marx Brothers? It can't be done. Only the Marx Brothers are the Marx Brothers. Not that I'm comparing myself to the Marx Brothers by any means, but I think you find your own style. Maybe what I'd like to show trainees who come through with me is that it's okay to enjoy the patients, even in a very serious discussion. Dr. Lidia Schapira: Yeah, I would almost say that it speaks to the fact that you're very comfortable with your clinical persona in that you can allow yourself to be totally human with them. And if human means that you can both sort of align around seeing some humor or cracking a joke, that is perfectly fine. I have a question for you, and that is that a lot of my patients in my practice, and maybe some of our other listeners come from completely different cultural backgrounds, and many don't speak the same language as I do. So for me, thinking about humor in those situations is impossible just because I just don't even know what we can both accept as funny. And I don't want to be misunderstood. Tell me a little bit about how to think of humor in those situations. Dr. Stacey Hubay: That's a good point you make. It makes me think about how when I read Shakespeare's plays, we all think his tragedies are fantastic. And when I read his comedies, I'm like, "This isn't very funny." Or if even when you watch sort of silent movies from the 1920s, I'm like, "Did people really laugh at this?" So you're right. Humor is very much of its time and place and its culture. And even people from the same time and place might not share the same sense of humor. That being said, somehow it still works with the people who are open to it. Somehow it's not necessary, because you've made a very witty joke, or vice versa, that we all understood all its complexities. It's more the sense that we're laughing together. And I talk about a gentleman that I met in my practice in this essay, and he didn't speak English, so his daughter was translating for us. And nobody was making any kind of verbal jokes or humor. And this was the first time I was meeting him in consultation, and he just kept making funny faces at me the whole time I was talking, and I didn't know what to do. I was completely bamboozled by this interaction. And it actually ended up being sort of one of the funniest visits I'd had with a patient. By the end of it, I could barely get a sentence out. And I thought, this is absurd. This is a very serious situation. This poor gentleman has stage 4 lung cancer, brain metastasis, but he just wouldn't let me be serious. So I think that humor can transcend cultural, linguistic boundaries amazingly enough. Again, if the person was open to it, this person was almost determined that he was going to make me laugh. It was like he'd set out that by the end of his visit, he was going to make sure that we were having a good time. And I was just, "I'm helpless against this. We're going to have a good time." I remember coming out of the room, the nurses I was working with, they're like, "What was going on in that room? Is he doing well?"I'm like, "Well, in a way, yes, he is doing well." At the end of this visit, we were all in a very good mood. But I'll sometimes use sign language, or I'll make some stab at French or whatever it is that the patient speaks, and then they just laugh at me, which is also fine, because they can kind of see that you've made yourself vulnerable by saying, "You know, it's okay if I can't speak your language." And they just smile and laugh with me. So it's not that it's a joke so much, it's more that they just feel comfortable with you. But you're right, it is more challenging. It's something I wouldn't usually do in such a situation unless I had gotten to know the patient, their family, reasonably well. Dr. Lidia Schapira: Let's talk for a moment about wellness and joy in practice. What gives you the greatest joy in practice? Dr. Stacey Hubay: Undoubtedly the people that I see and I work with. When you go into medicine and you train, we all train in academic settings. And I had excellent mentors and academic mentors, and the expectation, because you're trained by people who are good at that kind of work and succeeded, is that you might want to pursue that, too. And it took me a while to realize that that's not where I get most of my joy. I like being involved with research and I appreciate that people are doing that work and I love applying that knowledge to my practice. But I get my joy out of actually seeing patients. That wasn't modeled a lot necessarily to us in the academic setting. It's taken me quite a long time to realize that it's okay to lean into that. If that's what I like about my practice and that's what I can bring to the interaction, then that's what I'm going to do. And I started looking back, it would have been nice to realize, it's okay. It's okay to be a clinician who really enjoys seeing patients and wants to do a lot of that. Again, different kinds of people become physicians, but a lot of the people we had as mentors, they had chosen academic careers because, not that they didn't like patients, they often did, but they really wanted to pursue the research aspect of it. And they would try to cut down on their clinical work and say, "It's nice if you don't have two clinics, you can focus on the research." And I think to myself, but I like doing the clinics and I like seeing the patients, and it would be a shame to me if I didn't have that. It's not just the patients, but my colleagues as well, who are also great fun to have around, the nurses we work with. Really, it's the interactions with people. Of course, we get joy from all kinds of other things. In oncology, it's good to see patients do well. It's wonderful to apply new knowledge and you have a breakthrough coming from immunotherapy to lung cancer, melanoma. That sort of thing is fantastic, and it gives me joy, too. But I have the feeling that when I retire at the end of my career, I'm going to look back and go, "Remember that interaction with that patient?" Even now, when I think of when I started in clinical settings as a medical student, I remember, I think it was my first or second patient, I was assigned to look after an elderly woman. She had a history of cirrhosis, and she was admitted with hepatic encephalopathy and a fractured humerus after a fall. I didn't know what I was doing at all, but I was rounding every day. And I went to see her on the third day, she was usually confused, and I said, "How are you doing?" She looked at her arm and she said, "Well, they call this bone the humerus, but I don't see anything particularly funny about it." I thought, "Oh, she's better." That's actually one of the earliest things I remember about seeing patients. Or the next year when I didn't realize I was going to pursue oncology. And I was rotating through with an excellent oncologist, Dr. Ellen Warner at Sunnybrook, who does breast cancer. We were debriefing after the clinic, and she said, "Someday, Stacey, I'm going to publish a big book of breast cancer humor." And I thought, "I wonder what would be in that book." And that's when I got this inkling that maybe oncology had just as much humor in as every other part of medicine. And that proved to be true. Dr. Lidia Schapira: What was it, Stacey, that led you to bioethics? Tell us what you learned from your bioethics work. Dr. Stacey Hubay: I think it's because basically I'm a person who leads towards the humanities, and for me, bioethics is the application of philosophy and moral ethics to a clinical situation. And I think medicine, thankfully, has room for all kinds of people. Of course, you have to be good at different things to be a physician. But I always imagined myself, when I went to school, that after a class, you'd sit around a pub drinking beer and discuss the great meaning of life. And I thought, this is my chance to pursue that. And I was hoping to kind of– I didn't think of it as that I was going to this because I was interested in humor and joy in oncology, although I obviously am. I was thinking that I would be able to make a difference in terms of resource allocation and priority setting, and I still want to pursue those things. Things often lead you down a side road. And bioethics, for me, has sort of reminded me of what I like about this work. And because I was surrounded by many people who are not doing that kind of work, who were surprised how much I liked it, it made me think very carefully about what is it that I like about this. So the bioethics degree, it's finally allowed me to be that person who sits around in pubs drinking beer, discussing Immanual Kant and Utilitarianism and whatever moral theory is of flavor that particular day. Dr. Lidia Schapira: What led you to write this particular story and put it in front of your medical oncology colleagues? Is it your wish to sort of let people sort of loosen up and be their authentic selves and find more joy in the clinic? Dr. Stacey Hubay: That's a good question! The most immediate impetus was I had an assignment for my degree, and I thought, I have to write something. But I'd been writing down these sort of snippets of things I found funny. Occasionally, I just write them down because they were interesting to me. And because we often relate stories to people, "What did you do today? What was your day like?" And because you tell these stories over and over, they develop some kind of oral, mythical quality. You're like, "Here's what I remember that was funny that happened, and it might have been many years ago now." And I think I'd been thinking a long time about writing it down and sort of organizing it that way. And I guess having to produce something as part of this degree program was an impetus for me. But I'd always wanted to do it. And I think the main thing was I wanted to make it clear to myself what it is I like about it. It's actually made it, for me, much more clear. It was sort of a nebulous thing that I like my work and what is it like about it. And this is what I like. I like the joy I get from patient interactions. And then a secondary goal is I hope that other people, if they were to read this, they realize it's okay for us to have joy in our work as oncologists. And there is a lot of doom and gloom in the world and in our practices, but there's always, always a chink that lets the light in, there's always some humor in what we do. And so I hope that if other people can find that, too, that they enjoy their practice and they last a long time and ultimately help patients through this difficult journey. Dr. Lidia Schapira: Are you somebody who likes to read stories? And if so, what stories have you read recently that you want to recommend to our listeners? Dr. Stacey Hubay: Oh, I am reading The Master and Margarita because three different people recommended this novel to me over the last three years. When a third person did, I thought, "That's it. Got to read it." It's a Russian novel from the 1930s that was banned until, I think, the '60s or '70s. It's like a satire of Russian society in the '30s. And actually, what I like about it, I haven't finished it. I'm a third of the way through, as I think it's one of the so-called classic novels, people tell me, but that's funny. A lot of the classic novels are kind of tragedies or romances, and this one is sort of absurd black humor in the face of a difficult situation, which I guess is related to oncology, again. So this sort of oppressive, difficult society, the 1930s and Soviet Union, how do you deal with that? With humor. So I'm quite enjoying it, actually. So I recommend that one. Dr. Lidia Schapira: Well, you're an amazing storyteller, and I really enjoyed our conversation. Is there any final message that you want to convey to our listeners? Dr. Stacey Hubay: If you have a chance to become an oncologist, you should do it. It's just the best career I can imagine. Dr. Lidia Schapira: Well, with your laughter and with that wonderful wisdom, let me say, until next time, to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Stacey Hubay is a Medical Oncologist at the Grand River Regional Cancer Center.


