Cancer Stories: The Art of Oncology

JCO's Award Winning podcast Cancer Stories: The Art of Oncology features stories, dialogue, and personal reflections that explore the experience of living with cancer or caring for people with cancer, hosted by Dr. Lidia Schapira.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Afternoons in the Tower of Babel: Miscommunication in the ICU 06/29/2023

Afternoons in the Tower of Babel: Miscommunication in the ICU Listen to ASCO’s Journal of Clinical Oncology essay, by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis. TRANSCRIPT Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD () We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week. A patient dying of a toxicity that should have been treatable, but is not. The oncologist's tasks: to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility. The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning. “So, if our prayers were answered and the lung cancer is shrinking, why are we here? “It happens this way sometimes,” I hear myself saying, instantly dismayed by my own banality. This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes. “Explain ‘failing,’ explain ‘stable,’ explain ‘stable failure,’ explain ‘insufficiency.’” My first tries were themselves insufficient. I try again; choosing carefully, using different metaphors: -the heart as pump, -the bone marrow as factory, -the kidneys as filter, -the immune system as … a loose cannon. -the lungs as collateral damage The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough. Daughter-in-law, following carefully, is quick to interject, “But yesterday you said the X-ray is ‘unchanged,’ so why does he need more oxygen?” Did I say that? Yes, the notebook in her lap remembers all. “You say now ‘rest the lungs’ on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle.” Carefully, I unwrap more of our secret lexicon: “Proven infection” versus “infection” “Less inflamed” is still dangerously inflamed. Five sets of eyes, five sets of ears, five sets of questions. And the notebook. I begin again, choosing carefully. The learning is a process and occurs incrementally. I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part. But words are not all the tools we possess. There is also the language of the body. The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU. With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear. And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Barry Meisenberg, who is Chair of Medicine and Director of Academic Affairs at Luminis Health. In this episode, we will be discussing his Art of Oncology article “Afternoons in the Tower of Babel.” At the time of this recording, our guest has no disclosures. Barry, welcome to our podcast, and thank you for joining us. Dr. Barry Meisenberg: Thank you for having me. Dr. Lidia Schapira: Barry, let me start by asking you my now famous question: What are you reading now and what would you recommend for our listeners and readers? Dr. Barry Meisenberg: I will tell you that, for a very special reason, I've been reading Thomas Wolfe. You know, the author of Look Homeward, Angel, and his final book everyone knows the title of You Can't Go Home Again. But I've been reading them with a very specific view. I'm interested in all the medical interactions and I find them immediately relevant to what I'm doing. And Thomas Wolfe talks about physicians treating dying patients. And the good physicians are also really caring for the family. And there are a couple of just wonderful examples. Would you like me to read you one? Dr. Lidia Schapira: I would love it. Dr. Barry Meisenberg: So this is from Look Homeward, Angel when Tom's beloved older brother Ben is dying from post-influenza pneumonia. And part of his family just can't understand it. They can't get used to it. And they keep insisting that the local physician do more. And this doctor who's Dr. Coker in the book, that's not his real name, of course. And he says to the sister, who's pretty close to hysterical. He said, “My dear, dear girl, we can't turn back the days that have gone. We can't turn life back to the hours when our lungs were sound, our blood hot and our bodies young. We are a flash of fire, a brain, a heart, a spirit, and we are three cents worth of lime and iron which we cannot get back.” And I say this that as we learn when we're in the ICU, we see a patient in the bed and we think, “end of life” and families look at that patient in the same patient, the same bed, and think of the young person, healthy lungs and strong desire for life. And we don't always see the same thing. And I just thought that piece of advice by that doctor was wonderful. Dr. Lidia Schapira: That's beautiful. Thank you so much for sharing that with us. Dr. Barry Meisenberg: Thank you. Dr. Lidia Schapira: This is a very special piece. And the first thing that I wanted to ask you about is how did you choose the title? Dr. Barry Meisenberg: I feel, as the readers will appreciate, that we often struggle to communicate with families because of the jargon and of the strangeness of the environment. And although the Tower of Babel is obviously a biblical reference where God punishes humans by scattering their languages so they can't communicate with each other, in the more sort of vernacular sense of that word, it just refers to a failure, an inability to communicate openly. And I think that's what this article is about. Dr. Lidia Schapira: Let's talk a little bit about what the article is about. I read it as a very moving reflection, very sincere reflection from an oncologist who is heartbroken because he's about to lose a patient to complications of therapy. Help me understand a little bit about your message and how you wanted to communicate the importance of choosing the right words when the message is just so dire. Dr. Barry Meisenberg: It's actually two themes. You mentioned that sometimes when you choose the right therapy at the right time, at the right dose, and bad things happen anyhow that aren't supposed to happen, we take it very personally. And the second theme here is then our role as oncology, which I believe is at times the most important role we have, is to explain this strange environment to sometimes the patient, but also the family. And that means being aware of all the acronyms we're using and the jargon. Knowing that there are other physicians who they may have talked to who will say one thing and be seized upon one little phrase by the intensivist, by the nephrologist, by all our other colleagues. And feeling that it's our job, my job to wrap all those opinions together and to explain what it really means because they're all partial views. Dr. Lidia Schapira: And also to provide guidance for the family. At one point you needed to explain, but also help the family come to a decision, which is a very difficult decision, and that must have felt very bad for you in a very, very difficult situation in a windowless room next to the ICU. Dr. Barry Meisenberg: Again, I think it's actually our job. Our job is not just to write chemotherapy orders and order images. Our job is to care both for the patient and make sure the end of his life, in this case of his, is dignified, but also to care for the family, knowing what they're experiencing at the moment and what they'll experience after the death. I'm honored to do it. Some excellent intensivists can do this well. But I also think it's my job to do and I think it's important to teach young physicians that's their job. Dr. Lidia Schapira: So let's talk a little bit about that because I think for perhaps our generation and for more senior oncologists this always has been part of the job and we've always understood that it's our responsibility to be present. To be present as you, I think you use the word as an ambassador in some ways. To reconcile what they're hearing from other people, to provide a framework for understanding what has just happened, and to get past the technicalities of the information and the words written down in the notebook to really tell the patient and the family and comfort them to understand where they're at. But it's not the way many of our colleagues today view the job. Can you reflect a little bit on that? On whether or not it's really the oncologist who needs to be at the bedside to explain this? Dr. Barry Meisenberg: Well, by way of background, I am PGY 40, I think that's about right, PGY 40 of people of my generation. So I don't know if it's strictly generational, but I do have a whole view of an oncologist, holistic view, as opposed to a partialist view where we don't go into the hospital, we don't do end-of-life conversations in a hospital. We let the palliative care team do that or let the hospitalist do that. I just think it's not good for patient care. It's also not good for the oncologist because this is why we are viewed as a special breed of physician because we can do this. Other people are afraid of it. They don't like to deal with death or bad outcomes or bad prognosis. And we do it in our routine and people honor us for that. And so if we have a new ethic about this that “Let the intensivists do that or let the palliative care team do that,” we're losing what makes, part of what makes us special. Dr. Lidia Schapira: That's a very interesting thought when we’ll hold and probably need to come back to it and reflect over the course of the day and the next several days. Let me go back to the scene that you give us in this beautiful essay. And you talk a little bit about the notebook, which I found very interesting, where I think it's the daughter-in-law of the patient is carefully recording the words and she's picking up on some what she sees as inconsistencies. Wait, yesterday you said, or last week you said "Get out of bed," and now it’s, “He can't.” You used this word yesterday, but this word today. Dr. Barry Meisenberg: Right. Dr. Lidia Schapira: Can you share with us a little bit about how you react in those situations? Because I was just sort of feeling the frustration of trying to say, "You need to drop the pen and we need to just think about what's happening here." Dr. Barry Meisenberg: What you're referring to is this section, when the questioning, when our words are carefully examined, held up for review. Normally, I'm happy to have families write stuff down and record their questions, but if last week I said "stable" and today it's some other term to describe it, well, it is an apparent discrepancy says the notebook. And yeah, a week ago it might have been appropriate, “Get out of bed, get those lungs working.” And here we are five or seven days later, and he's on a ventilator because we need the lungs to rest. So explain that and it's in the notebook. Explain this apparent discrepancy, or another physician said he's doing good, meaning he's not progressive. And I'm saying “You’ve still got respiratory failure.” Failure is a powerful word, by the way. You’ve got to be careful when we describe heart failure, respiratory failure, bone marrow failure. So this is, whether it's the memory or the notebook, I don't consider it an enemy, but it just shows you how careful we have to be in what we say. And what we can communicate in 15 seconds to a colleague takes much more time, and you really have to use metaphor to explain that. Dr. Lidia Schapira: So let me pick your brain a little bit. You describe yourself as a PGY 40, and maybe that's literal, maybe it's not. But as an experienced clinician, what advice do you have for some of the junior oncologists about how to sort of feel perhaps when they're being challenged in a difficult situation and how to choose their words and sort of cultivate that way of being with, that presence that can really bring comfort to families? Dr. Barry Meisenberg: That's a great question, and I just hope that we would all approach this with empathy to try and understand what the family is going through. And the article tries to bring that out, that there's a family struggling in a strange environment. And our patients and families may be very accomplished people, but now they're in a new environment that they can't control, they don't understand, so let's care about them as well. And I never take it personally, someone's challenging my advice or my knowledge. That's almost like expected. So that's how I would try and explain our role there. This particular family wasn't difficult in that way at all, and I hope that didn't come across that way. They were just very concerned and wanted to know and wanted to be educated and looked to me to provide that in a very respectful sort of way. But we certainly have had other families who insist that obviously there's something else better someplace else and some knowledge beyond what I bring to the table. But once again, what you just sort of care- I guess the best word is empathy or compassion for what they're going through. Dr. Lidia Schapira: Barry, if you can bear to share this information, is this a patient who died of a complication of immunotherapy? Dr. Barry Meisenberg: That's exactly right. Lung cancer, smoking history, got immunotherapy. Excellent clinical response until interstitial pneumonitis. So like a more than 50% response to the initial, I think just one cycle. And then though, the symptoms of dyspnea and progressive respiratory failure ended up in a hospital and other complications along the way, heart attack and whatnot. So it is based on a real patient, although the conversations are based on accumulated experience. But it was an actual patient and we knew it early, we used high-dose steroids early, and it just didn't seem to make a difference. And then second-line, third-line, therapies, many of your readers will know that these are all sorts of anecdotes, and one of them was tried as well, but just progressive respiratory insufficiency in a way that just like everything else, when there's a response, we don't really fully understand why some people respond and some don't. Dr. Lidia Schapira: And how do you deal with and how have you learned to deal with the grief that follows losing a patient, especially under these circumstances? Dr. Barry Meisenberg: Yeah, I don't know that I have learned how to deal with it. I mentioned in the article that I was welcomed into the circle of grief by this family who appreciated what I was feeling. Somehow it's kind of remarkable that some people do that. Some grieving people can understand others are grieving. So I don't really think that I've got a solution other than this sort of banal notion, as I mentioned in the article, that it's always been this way. Bad outcomes, bad things happen, and maybe it's the way of the world. I would feel differently if I had missed something, perhaps, but I grieve, I but don't blame myself and ready for the next patient next challenge. Dr. Lidia Schapira: I always think it's wonderful when we are the recipients of such amazing compassion from families and those moments really sort of, in a way, rekindle our vocation and our ability to sort of recharge a little bit, to be present for the next family. I wonder if writing about it in a way helped you process this experience. Dr. Barry Meisenberg: Oh, I think it absolutely does. And I'm so happy that this journal and this society gives us this opportunity and other journals as well. Because processing, which I guess is a modern term, is so important for us. There's a whole interest in reading things of this nature, not overly saccharine and not overly stereotyped because it doesn't always work out that way. But I absolutely feel that we're a brotherhood and sisterhood, and we need to share with each other because these are things we all go through, which I believe is the whole purpose of this section. Am I right? Dr. Lidia Schapira: You're absolutely right. And you sort of anticipated my final question, which was, as a community, I certainly feel we need these stories and we need to share these stories. But I may have asked you this question in a prior conversation, but can you tell me how you use stories in your career for teaching or for sharing experiences, or reflecting with colleagues or trainees? Dr. Barry Meisenberg: I think they're a great opportunity, and obviously we want to encourage young people and medical staff of all ages to write their own and share. But we have a program specifically for residents and trainees where we look at some poetry or very short essays, some of the journals about these kinds of issues, and then reflect. One of them for example is how do you overcome physician errors, and a whole set of readings and poems about errors that have been made and how they linger with you your whole career. Someone wrote a beautiful line, "worn smooth by mental processing," because in general, we don't give them up. So these kinds of things I think are very helpful in reflecting and helping people understand that this is something we are all going to have to face and we’re all going to have to deal with in our careers. And you can’t hide it, you’re going to deal with it so we can’t hide from it and it is an effective coping measure. Dr. Lidia Schapira: Well, thank you so much for sharing your thoughts. My... /episode/index/show/aoopodcast/id/27316197

Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care 06/15/2023

Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care Listen to ASCO’s Journal of Clinical Oncology essay, by Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. TRANSCRIPT Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. In this episode, we will be discussing his Art of Oncology article, "Market, Gift, Everyday Ethics, and the Emmanuel Levinas in Patient Care." At the time of this recording, our guest has no disclosures. Alan, welcome to our podcast, and thank you for joining us. Dr. Alan Astrow: Thank you for inviting me. Dr. Lidia Schapira: Your article has a very long title, and we've got Markets and Gifts and Ethics and a philosopher. So let's start by helping our listeners and maybe our readers to really understand the intention of this essay. What is the message of the essay? Dr. Alan Astrow: The message of the essay is that we need to be reflecting and be mindful of the values that underlie medical care as we practice every day. Dr. Lidia Schapira: And if I were to quiz you a little bit on that and push a little bit, what are those values? And how does perhaps market conflict with ethics and mission? Dr. Alan Astrow: Trust, caring, honesty, thoroughness, dedication to the patient, focus on the patient and the patient's needs. The problem with market or the danger of market is that it can sometimes distract us from focusing on the patient and that patient's needs. Dr. Lidia Schapira: So how would you respond to somebody who says, but we need organization, we need markets and finances in order to have a system that provides health care? Where do you see the front of conflict, perhaps between those who are more mission-driven, as you've just beautifully articulated and have the trust in the patient's care front and center, and those who are more concerned with the productiveness and efficiency in collections? Dr. Alan Astrow: I have tremendous respect for my administrative colleagues who are focused on keeping hospitals solvent. I worked at a hospital earlier in my career that was not focused as it needed to be on making sure the hospital had a sound strategic plan. And that hospital is now condominiums. So, absolutely, we need to be aware of financial realities and hospitals need to pay their bills. But underlying that, we can't think that the first mission of a hospital is to earn money. The first mission of a hospital is to provide service to those in need. And then our colleagues in administration have to help us find ways to do that in a manner that's financially responsible. But we think first of the patient and that patient's needs. And patients understand that. Patients don't want the hospitals to go bankrupt, and patients want their doctors and nurses to be paid. Patients do worry sometimes, with good reason I think, that the system may be overly focused - that's the issue, it's an issue of balance - overly focused on markets, overly focused on finance. It seems as if we're living in a world in which money is driving everything. Money is speaking with too loud a voice. That's the issue. Money is important. But the needs of the patient and what our mission is to patients have to be the driving force of the hospital. That has to be the predominant voice, the loudest voice. Markets should be serving the patient and the patient's needs, not the other way around. Dr. Lidia Schapira: I think I understand that clearly. But now let's talk about the gift that's in the title, and that, in my mind, was a very imaginative way of presenting what we bring that is not just a service. Talk a little bit about how you understand the gift of presence or the gift of caring. Dr. Alan Astrow: The gift is when you're really lost in the task itself. When you're really focused on that patient in front of you and trying to understand the patient and trying to address the concerns that the patient has. And during those moments when you're focused on that patient, you're not thinking about money. No, you should not be. But the first predominant impulse needs to be what the underlying mission of that organization is. And in medicine, it's caring for the patient. And so, for example, when we hear administrators saying we're going to reach out to this and that market, well, that to me shows a mistaken focus. We understand that the hospitals need to raise money from banks and other places in order to make needed capital investments. But we need to think first and foremost about the people in the communities we serve, and then the markets should be at the service of people and communities. I think in general, it's a larger issue. The power of money is speaking in too dominant, in a way, in too many aspects of our world. And medicine, above all, needs to resist that. And there's a manner in which healthcare institutions are functioning these days which I think leads patients to have reason to doubt. And so if they have doubts about what our primary interests are, they will lose trust. And the loss of trust is devastating to the medical relationship. Dr. Lidia Schapira: Let me explore that a little bit with you, Alan. I would say that in my mind, providing that caring presence is part of the mission of medicine, but you talk about a dimension of gift. Help me and our listeners and readers understand a little bit more about the gift. You talk about the gift being something that's exchanged, that there's even a reciprocity in giving and receiving gifts. How are we to understand that perhaps through the lens of the philosophers and the big thinkers here? Dr. Alan Astrow: I'm borrowing this from Lewis Hyde. He was referring to a traditional gift economy. And according to Hyde, who is taking this from cultural anthropologists, that in many tribal communities, tribal societies, just, for example, in the Native American cultures in our land that were not cash-based, they're based upon a notion of gift. You would provide a gift to the other without any expectation of payment, but there was a passive understanding that at some point that gift would be returned to you. And that's how these societies, according to cultural anthropologists of course, it's probably hard to pin this down, but that's the way Hyde has presented it. This was the base of the economy of gift-oriented cultures. And he was surmising that there's always an element of gift he felt was particularly in the world of creative artists, because if the artist is just thinking about how he or she could make money, their work is not likely to be very good. The artist needs to focus first on the gift dimension to it, the part that comes to them really as a gift. Your talent is a gift, and you may be able to see that your talent as a physician is a gift. And so much of our skill really comes from the gifts that others have given us in a way. Just think of our training. We think about how hard we worked and it's true and how many years we gave into our training. But isn't it also true that we learned from the illnesses of others? They shared their stories, they shared their experiences with us even when we didn't know that much and we didn't have that much to offer to them really. We were relatively unskilled. We developed our skills through treating people who presented themselves to us in a way hoping that we would help them, certainly. But their presence to us, since we were not well-trained at that point, was a bit of a gift. That's how I would see it. And if you see it as a gift, perhaps it could help us in our orientation toward the service we need to provide to others, those moments when we might feel somewhat resentful. Well, maybe it's a good time to just remind ourselves a bit. Not that I don't feel resentful or exhausted or- I'm just like anyone else, but I can remind myself that yes, it's a gift to be a doctor or a nurse. I believe, I really believe that. In so many fields there's so much just about the finances and the bottom line, and that's not true about being a doctor or a nurse. That's not ultimately what it's about. And it's one of the great pleasures of being a doctor how we can help other people with our skills. Dr. Lidia Schapira: When we hear the word "gift," unfortunately, our minds may go to things that we need to declare that could potentially be conflicts. But you're talking about gift in a totally different way. You're talking about giving the gift of our presence and recognizing the gifts that our patients give us by teaching us, by allowing us to learn from their experience through their experiences. And in your essay, you talk a little bit about appreciating this and have an impact on the culture of medicine. So, can you talk a little bit more about how this appreciation of gifts exchanged and time spent together and talents shared can impact favorably on the culture of medicine even perhaps, as you're hinting, improve our sense of wellness or reduce our risk of burnout? Dr. Alan Astrow: When we think of our work as partly a gift we can give to others and a gift we have received from others, I believe it enhances our morale and the morale of whatever enterprise we are part of. If we all, I believe, are able to appreciate more of the dimension of gift in healthcare, it has the potential to have us see things differently, organize the way we care for patients and each other differently, and potentially transform our whole system of care. Because finally, it starts with one-to-one encounter, I believe. But the one-to-one encounter is influenced by the larger systems that shape what we're able to do. So, I think if we doctors and nurses are able to articulate a gift dimension to care, I think we can help our administrators see it that way. Because I think my experience working with many in administration is that they have chosen to work in the field of healthcare because administration wants to see it that way, too. Many of our most talented administrators could be working in other fields - finance, law - they could be making more money in other areas. But they chose to enter healthcare because they do want to provide service to others. And it may be that many in administration, but many of those who are responsible for keeping hospitals financially solvent, are just as concerned as we doctors are by the overweening presence of financial concerns as they more and more dominate our day-to-day lives as physicians, nurses, and others in healthcare. I don't want to sound like a Pollyanna here. We do have to be able to pay for things, no question about it, and there's no simple solution to any of these problems, and how should healthcare be paid for? Should we have single payer? These are complicated issues. But I think if we think about it, we should think about how we can organize our system of care so that we can further enhance the dimension of gift. That would be the point. Dr. Lidia Schapira: Well, we really appreciate the depth of your reasoning. It certainly is appealing to me, and I hope that it resonates with many of our readers. You've made a very strong pitch here for humanizing and really putting mission front and forward in your incredibly erudite way. So, Alan, how does Levinas enter our conversation? And how does Levinas enter the thinking that you had in putting these pieces together for the essay? Dr. Alan Astrow: So Levinas is one of the great thinkers of the 20th century, and his core insight is that the reason we are here as human beings, in his view, is to bring the ethical order into being. So we're not here to earn the maximum amount of money. We're not here to face our own mortality. No, we have a specific purpose to bring the ethical order into being. And, as doctors and nurses engaged every day in actions that we're trying to help people, he would claim that we should be trying to bring the ethical order into being in healthcare in our day-to-day actions. He was very focused on the idea of face-to-face ethics, that it's in the experience of the other, seeing the face of the other, that you need to respond. We ought to respond to the needs of the other. At that moment, we're not thinking of ourselves at all. We're just responding to the needs of the other. And in that way, we are bringing the ethical order into being. Dr. Lidia Schapira: So the dimension of gift giving is layered onto this ethical order. How do we put the two thoughts together? Dr. Alan Astrow: When you give a gift, ideally, you're trying to think about the other. You're trying to think about what the other needs. The gift is not about you. It's about what's going to make the other happy. It's what's going to make the other feel acknowledged. That's what the nature of a gift is. And you're not really expecting anything back. In medicine, too, it's not about what the patient could do for us, it's only about what we can do for the patient and the patient's needs. So, it's a true gift of the doctor to the patient. And that's why the patient can feel trust in us because they sense that it's a gift of us to them. We are not expecting patients to do anything for us at that moment. We're not expecting them to be paying us, although we hope we'll get paid. We're not expecting them to enroll in a clinical trial, although we might eventually hope that they will. But at that moment, it's pure gift. That's where the trust comes from. The gift comes first, the others later. Dr. Lidia Schapira: So one could argue, Alan, that that is just the ethical conduct of medicine, that there is no extra here, that there is no gift, that that is just how we should behave. So help me understand a little bit more then, about how you understand gift. From my experience, as I was taught by cultural anthropologists, gift can be a gift of time, gift can be a gift of presence. And it is those sorts of additional things that we convey through our actions or transmit through our presence. Reciprocally, we also are gifted by our patient's presence and by their gift of spending the time they have left with us. How do you understand gift? Dr. Alan Astrow: Okay, so you're saying a gift is something extra that we add on. Okay, I can accept that. I wouldn't deny that. My point would be that, yes, a gift orientation is central to the ethical practice of medicine. Yes, it is the ethical practice of medicine. But what we're seeing in our current world is that that orientation is increasingly threatened. Isn't that what we're seeing? That doctors are selling practices to private equity? That we have more and more for-profit businesses in healthcare? And it seems in too many places, patients fear that the primary focus is not on the gift dimension, but the primary focus more and more seems to be on the mercantile aspect, the money aspect. So my point would be that, yes, we ought to know what the ethical practice of medicine is. But it's too easy to forget, isn't it? And don't we see that that's what's happening? People are forgetting. We all need to be reminded - who is going to remind us? Dr. Lidia Schapira: Thank you, Alan, for your contribution. And to our listeners, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. /episode/index/show/aoopodcast/id/27158520

Cemetery Rounds: Encountering Former Patients' Graves 05/23/2023

Cemetery Rounds: Encountering Former Patients' Graves TRANSCRIPT Listen to ASCO’s Journal of Clinical Oncology essay, “Cemetery Rounds” by David Steensma, a hematologist-oncologist in Boston. The essay is followed by an interview with Steensma and host Dr. Lidia Schapira. Steensma describes the complex emotions that result from encountering graves of former patients on walks through a cemetery in his New England hometown. Narrator: , by David Steensma, MD, FACP In the summer of 1784, the body of a 4-month-old infant named Sally was the first to be laid in the earth of the hill next to my home. The gravedigger’s backhoe still cuts into the ground about once a week in what has become the largest cemetery in this Massachusetts town. During the recent pandemic, the graveyard was an open place with no need to wear a mask, so I often walked its quiet paths in the evening to stretch my legs after long hours hunched over a computer. These unhurried ambles were a chance to reflect on the day’s events and make plans for future days—and sometimes to ruminate on life and how it ends. Little Sally’s simple slate marker, with a willow and urn carved above the names of her parents and a short, grim epitaph—“A pleasant plant, a blooming flower, Cut down & wither’d in an hour”—has been joined by thousands of other tombstones over the past two centuries. After a dozen years living in this Boston suburb, I now recognize some of the names on these memorials: Stones that mark the final resting place of people who were once friends or fellow members of the same Congregational church that Sally’s family belonged to long ago, and stones with surnames shared by nearby schools and streets. There are too many gravestones that recall young people who were once classmates of our children in the town’s schools. Walking past those memorials means remembering moments of shock and sadness: news about car wrecks and ski accidents, suicides, sudden collapses on hockey or football fields, and the other disasters that take the lives of the young. Stones for the 21st century children are all in the newest part of the cemetery, with its memorials for those who died within living memory. In that part of the cemetery, visitors still often leave toys, Boston Bruins or New England Patriots pennants, lacrosse sticks, and horse reins. Sally’s stone, in contrast, is the oldest part of the cemetery. It is surrounded only by close cropped grass and stout trees. Once I saw a freshly cut flower laying on Sally’s grave, and I wondered who left it. It is rare to see those ancient graves get special attention—a bracing reminder that no matter how bright our star might shine in our own era, we will all eventually be forgotten. The largest and most prominent gravestone in the cemetery recalls the grandson of a local eccentric. This boy drowned in New Hampshire’s Lake Sunapee at age 17 while trying to save another teenager who had fallen from a boat. It was the second time a close family member of the man had drowned: In 1893, as a child, he watched his older sister slip beneath the swift water of the Annisquam River. He reacted to this pair of tragedies by declaring a lifelong war on gravity. Grief is not always rational, although it may be productive. The eccentric man became wealthy—by predicting the 1929 stock market crash and by starting a successful business analysis firm—and he created a well-funded private foundation to understand and combat gravity. This Gravity Research Foundation sponsored important conferences attended by Albert Einstein and other luminaries and awarded prizes to Stephen Hawking, Freeman Dyson, and a half-dozen Nobel laureates in physics. Gravity, however, remains unconquered and incompletely understood. All of us will eventually be pulled into the earth by its unrelenting grip. A growing number of gravestones bear the names of people who were once my patients at a Boston cancer institute. Some days it is hard to see those stones on my evening walks, noticing name after name that once graced a clinic schedule or hospital rounding list, and to be so starkly reminded of how our best efforts ultimately failed them. Most of the time, though, what I recall are the happier moments with these patients, which keeps these walks from being morbid. Cancer centers are not known for being joyous places, yet surprisingly, often there is laughter in clinic rooms or on morning hospital rounds. We oncologists celebrate milestones with our patients: remissions achieved, college degrees completed, new grandchildren, and long awaited weddings attended. We know that graves like these await all of us, but for a while, we can put that aside and not just live but thrive. In one corner of the cemetery, a small marble bench faces a stone that marks the final resting place of one memorable former patient: A young woman with a wicked sense of humor who, as a grieving relative said at her funeral, was wise beyond her years, and taken before her time. When I rested on that bench last night, I was reminded of what French vascular surgeon Ren´e Leriche wrote in 1951, at the end of his long career: Every surgeon carries within himself a small cemetery, where from time to time he goes to pray-a place of bitterness and regret, where he must look for an explanation for his failures. For me that cemetery is a physical place as well as metaphorical. Yet when I think of her, I always smile, remembering who she was, and the happiness she brought to those around her. When she was alive, her hospital room was a place of laughter and hope rather than bitterness and regret. Even after a long day in the clinic, when I made hospital rounds in the evening, it was a joy to see her and discuss the events of the day. I do not know how she kept it up for so long in the face of so many disappointments and frustrations. Everything we tried to treat her cancer eventually failed her—every antibody, cell therapy, and drug after drug after drug. Even when new treatment regimens were declared at national meetings to be active, well tolerated, and worthy of further study, she always seemed to be one of those who had not responded or who suffered intolerable side effects. One door after another closed so that soon the only available doors were the ones that took her back home, with the support of a kind and skilled hospice team. At times, she could sense my sense of failure as I sat by her bedside and would try to reassure me as if the sorrow was mine instead of hers. It’s all right, it will be OK. We did what we could. You did what you could. Now it’s time to move on. Where did she get the strength? Eventually, as evening turned to night, it grew cold in the cemetery. I moved on, buoyed by her memory. Saying good night to Sally, I headed home. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. David Steensma, who currently leads hematology early development for a biotech company in Cambridge, Massachusetts, and was for many years a faculty member in the Leukemia Program at Dana-Farber Cancer Institute and Harvard Medical School, and also a past Editor for Art of Oncology. In this episode, we'll be discussing his Art of Oncology article, “Cemetery Rounds.” Our guest disclosures will be linked in the transcript. David, welcome to our podcast and thank you for joining us. Dr. David Steensma: Thank you for having me. Dr. Lidia Schapira: I'd like to start by asking you a little bit about your process for writing. You have published beautiful essays in JCO and in other venues, and I know you've always been a writer. Talk a little bit about that, especially for some of our younger listeners Dr. David Steensma: This is the first article that I've submitted to the Art of Oncology in a number of years, actually, and this one was a long time in gestation. One of the things that I found over the years is that whether I'm writing and how much progress I'm making is a really good barometer of where I'm at mentally. And I think the fact that this took the better part of three years to write probably illustrates how difficult these last few years have been for me as they have for so many of us. Sometimes writing happens very quickly. You get a germ of an idea, something maybe you've been mulling over for a long time and it all falls into place. But much more often, it's a process in which one is trying to express what is very difficult sometimes to say appropriately. Dr. Lidia Schapira: Some of your articles, including this one, have elements of history in it, and I think that's something that you've always been interested in, not only medical history but history in general, sort of what was happening at a time when somebody was ill or an illness was first described, or in this case, people were buried. Tell us a little bit about that, about combining your interest in history with your medical writing. Dr. David Steensma: I think I like to tell stories and really always have. If I didn't do medicine, one of the other two alternatives was journalism. And I've always been interested in how things got to be the way that they are. So I think that naturally is reflected in the writing. Dr. Lidia Schapira: I know you're also an avid reader, so what would I find now on your night table or on the desk alongside the medical journals that probably are unopened? Dr. David Steensma: Wow. I have some science. I have Ed Yong's amazing book about the microbiome. I just started reading I’m Glad My Mom Died by Jennette McCurdy, a former child actor, which has just got rave reviews, so reading about her difficult upbringing in this memoir and her mother's death from breast cancer. And so the third one over on the shelf over there that I have off is ASCO-SEP because I'm doing the 10-year medical oncology board renewal next week. I've been doing the LKA for hematology, but I've also kept up MedOnc and internal medicine. It was just too painful to think about all three. So I have all these NTRK and ROS1 inhibitors and pathways for advanced cervical cancer jumbling around in my head right now, which I'm sure a lot of our listeners could relate to. Dr. Lidia Schapira: I can relate to the anxiety I felt the last time I was recertified, and I swore it would be the last time. So thank you for spending a little time with us. Maybe it's a distraction from the other. Yeah. I wanted to talk about “Cemetery Rounds.” We were so happy to get your paper after all these years. A reviewer said, “Oh, thank goodness, Steensma's writing again.” Tell us a little bit about this quiet, meditative practice of walking along the cemetery near your home, especially during the pandemic. Dr. David Steensma: Well, the pandemic did so many weird things, and just everything was different, from the way we bought food to the way that we caught up with loved ones to the way we structured our days. Everything changed, and one of the things we ended up doing was spending even more time in front of our computers. And I'm kind of fidgety, always have been. So by the end of the day, I'd had a lot of energy I needed to get out and thought about where I could walk nearby that was a good place to stretch my legs. And we lived right around the corner from an old cemetery and quite a large one, a cemetery that actually got quite busy during COVID, so I didn't really think about that part of it. But they brought in at the beginning of the pandemic, all kinds of extra materials for digging graves and cleared out some additional area. It was really quite striking just seeing that happen. But one of the things I think I didn't prepare myself for mentally, walking through that cemetery, which is a beautiful place, very respectful, and well kept, was how many patients and other people I would recognize. And just walking past stone after stone with names that I recognized, people who had been my patient or those of colleagues that I'd interacted with on inpatient services over the years, a number of children who had been our kids' classmates in the town's public schools and who had sadly run into one tragedy or another. It was really quite striking how many of the people I felt like in a very old cemetery, how many names I recognized. There were a lot, of course, I didn't, but their surnames were on the streets nearby and the town founders. And this sort of made me reflect, particularly when I noticed that we don't normally see our patients' graves. We may attend their funerals or their memorial services, but even that often the last time we see them is when they're going home to a hospice setup or to an inpatient hospice or sometimes just at a last clinic visit, and then something sudden happens. So this seemed like something that could have been very sad. But I think partly because of the tranquility of the place and the mindset of the pandemic, there was actually a lot of reflection of positive things, interactions with these patients - the happiness sometimes that we brought to each other, conversations that had been difficult, but also events that have been happy milestones that they got to see because of our care. And then also the hard realization that ultimately modern cancer care failed them that's why they were there. So just a lot to reflect on in a time when it seemed like death was all around anyway because of the pandemic. So I thought, gosh, this would be something I think people could relate to. Dr. Lidia Schapira: It struck me that you describe your approaching these gravestones as an intimate space that we normally don't get to be part of, that sort of belongs to the family and the friends and the community, but the clinician is often not there. And it struck me also that the immediate thing you talk about was how therapies have failed them. And I just wondered if you could talk a little bit more about that. Maybe because we're both part of the same culture, it's so easy immediately to think that we did something wrong and that's why they ended up there. But can you reflect a little bit more about that particular aspect of our work? Dr. David Steensma: Yeah, just because an outcome was sad doesn't mean that mistakes were made, but may reflect the limitations of the science and art of medicine as they currently are. I think surgeons wrestle with this a lot. And in fact, I included a quote in the essay by Rene Leriche, a well-known French vascular surgeon in the 1950s, who talked about how each surgeon has their own personal cemetery of a place that they go to reflect from time to time. And that's something that in M&M conferences I was always shocked as a student and trainee just how brutal they were on each other and on themselves. It's part of this surgical culture. But I think surgery naturally lends itself to thinking that somehow you did something wrong. And perhaps in medicine, we're a little bit more in touch with the fact that we followed the guidelines perfectly. We got advice from colleagues, patients were presented at conferences. We enrolled them in clinical trials of things that seemed interesting and promising and just that the disease just kept coming back. And so that's not necessarily a personal failure. And I think in that circumstance, there's maybe a little bit more space, a little bit more permission to connect with the memory of that person in a positive way and reflect on who they were and what they meant for their families and for the others that they interacted with. And so when I see these stones, I don't think, "Oh man, I really screwed up, and that's why they're here." Never, never. I think about, "Gosh, we tried so much, and he or she went through so much, and yet this was where they ended." Dr. Lidia Schapira: It seems to me a very healthy approach, certainly. And I loved the surgeon's quote here in the essay, that every surgeon carries within himself a small cemetery, not just the surgeon. I think, as you said, we do as well. I also love the framing of the fact that it's not so much guilt but sorrow that we carry for them and also that they affect our lives. I remember when you talked about your patients, I remember the article you published about Michaela, the little girl who played the cello on the Leukemia ward and got to be famous. And in this particular article, you talk about a young woman who somehow seemed to think that she needed to comfort you and reassure you that you did everything that you could. Those are such beautiful memories, and you have such a talent for sort of paying tribute to your current and past patients that this is really so beautiful to read. And with that, I just wanted to ask a personal question, if I may, and that is, do you miss the clinical work? Dr. David Steensma: I do, definitely. So, yes, I am always impressed by the strength of patients and of their families often, and people manifest that in different ways. But I've just seen so many amazing things over the years. When I decided that I wanted to try to influence cancer care and hematology care in a different way and move to direct hematology and early development in a research institute affiliated with a company, I, unfortunately, had to step back from seeing patients at Dana-Farber because it was considered a conflict of interest. It hadn't been until just a few months before but, you know, new rules. So I do miss that. And I've been thinking a lot about ways to get back to making those connections because, yes, it is meaningful to be developing new medicines, but there's something also very immediate about being there for a person in a time of need. And those relationships that you build, by far, that was the hardest part of making the job transition with so many patients that I had long-term relationships with; that was hard. Dr. Lidia Schapira: So my last question is more philosophical. I am teaching a course for undergraduates that involves explaining how people experience illness. So I've been reading a lot of illness memoirs throughout my career, and I was looking for scholars who had worked on this and found, of course, Arthur Frank and his themes of how illness is portrayed by patients, stories of shipwrecks and catastrophes or quests or restitution of meaning. And I wondered if you had given any thought to the same sort of narratives that oncologists play in their heads of how they treat patients. What do you think are the most important themes in the way oncologists think of and remember the patients they've treated? Dr. David Steensma: One of the things that's special about oncology is that even though it's a profession that is very much scientifically based, that we connect with patients at a point in their narrative and often get to know them over months, years, and that narrative and who each of us is along that journey change over time. So I think that's what makes our field really compelling. At least it was very attractive to me. That's very much true. I think of other fields as well, where you do have longitudinal care of a patient, but there is something special about a cancer diagnosis and what that makes people think and how their families and people around them react. That I think, is unique. It really is an honor to be with patients through this narrative, and Arthur Frank has written about that and about the sort of patient story and how that evolves. And I think that's a healthy way of thinking about what people go through. And we also have to remember it's their story that we're fortunate to be able to witness. And when you walk past a tombstone, you know... /episode/index/show/aoopodcast/id/26936730

A Labor of Love: End-of-Life Support for Young Patients 05/18/2023

A Labor of Love: End-of-Life Support for Young Patients Listen to ASCO’s Journal of Clinical Oncology essay, “ by Dr. Rebecca Kowaloff, a Palliative Care Attending at the University of Massachusetts. The essay is followed by an interview with Kowaloff and host Dr. Lidia Schapira. Kowaloff shares how she connects and supports young patients and families at the end of life. TRANSCRIPT Narrator: by Rebecca Kowaloff I had always thought that I gave too much space for death at the bedside of my patients. More than most of my medical colleagues, I seemed to accept its inevitability and had learned to talk about it, to watch it, and to sit with it. I did not cry, even for the patients robbed in their middle age by cancers sucking their life from within, aging them in hyperspeed before my eyes. Why did the weight not feel heavier to me when so many around me seemed unable to carry it? Despite the frailty of his body when we met, caring for Michael showed me my strength. He was a 25-year-old investment banker on Wall Street when he was diagnosed with a rare sarcoma. I wondered what he was doing the moment that first cell divided. Was he working late, handing a $100 tip to a taxi driver as his father said he sometimes did, or practicing with his college soccer team? Was this disease written into his genetic code when he was traveling the world with his family, smiling with missing teeth on a dock in Egypt in the pictures his father showed me? Did his body know it would have only 29 precious years, making him so generous to strangers, so thoughtful of others, and so eager to experience life and travel the world? I am sure he was full of hopes and dreams that shattered at the moment of his diagnosis. Amid the onslaught of emotions at diagnosis and as various chemotherapy regimens failed him, he started a foundation for sarcoma research to leave a legacy of helping children with similar rare tumors. Outside the hospital, we would almost have been peers as I was less than 10 years older and could imagine the assumptions he would have had about his life would be similar to my own. Suddenly there was no meeting a life partner, no wedding, and no children. There was no career advancement, no retirement trips, and no new hobbies or interests. There are books that will go unread and current events unexperienced. The world which had been expanding at a spectacular pace suddenly contracts to one person’s orbit: family, close friends, and what dreams can be realized on a shortened timeline in a perhaps newly limited body. He moved from New York City home to his mother’s house, returning, in some ways, to childhood. His soft-spoken mother listened to my prognostications with grief but not surprise, and my heart ached and eyes welled as I thought how she was watching her baby die. Each night on my drive home, I wept for her. When she saw him walk for the first time, she must have wondered what sports he might play. When he spoke for the first time, she might have wondered what conversations they would have, what speeches he might give, what school plays he might perform, and what songs he might sing. Like me she might have imagined cheering him on in sports, dancing with him at his wedding, and holding his children. She had watched him forge a path onto Wall Street and earn the friendship and respect of teammates on ever more advanced soccer teams. The sadness of her first child leaving home for college had surely receded as he self-actualized into a thoughtful, well-liked, and successful young man. And then came the diagnosis, and she watched all that her son had built slip away, watched him cling to as much normalcy as he could as the sarcoma ate his legs, sank his eyes into his skull, and sucked the color from his still-thick hair. His father appeared one evening almost a month into his hospital stay with the desperate questions of a parent who has been in such deep denial he had not even told his brothers back home about Michael’s illness. In a power suit, he blubbered that he could not live without his son, his "light," and begged me for fantastical treatments to fix him. In a tiny windowless meditation room, I rode the waves of despair with him. I explained over and over why our best efforts were no match for Michael’s cancer. Michael and I were practically peers and yet he entrusted me to lead him into this deep dark forest of the unknown, his final journey. Most times when entering his room I thought he had begun to "transition," his eyes half closed, his skin so pale and translucent, and his body so frail. One morning, I sat next to his bed and gently told him he was not improving, his lungs were failing, and I could not, would not, recommend intubation, which seemed imminent. He protested, asserting from behind an oxygen mask that he felt he was improving. He talked about physical therapy and restarting the treatment that had led him to this hospitalization, that had finally failed as he had always known it eventually would, but which was his last hope. His denial was his last defense. I met him where he was, shared his hope, but held fast to reality, framing the decision not as a choice he had to make, but as a recommendation from a trusted physician and an acceptance of his body’s truth. He agreed, do not resuscitate, do not intubate. He thanked me and asked why I was the only honest one on his team. When we entered the room to recommend against a BiPap bridge to nowhere, his father tried to block the painful conversation with his body and his pleas “No, please, I don’t want him to hear this!” I sat at Michael’s side, completing an arc of love and care with his mother, sister, and nurse, and put into words what he knew and was living. His answer broke us all, “Done.” This one word, said with surprising strength and finality, felt just as defiant as all his previous optimistic phrases, although it was an acquiescence to reality. To his end, Michael directed his care and made his own decisions, and he made it clear that he was finished with cancer before it finished him. For the first time ever, I sobbed at the bedside. I told Michael I would never forget him and what an honor it had been to care for him. The only response he could muster was, “Likewise,” which will live inside my heart forever. His mother, pregnant with grief for 4 years since his diagnosis, began her labor of loss, the painful, arduous separation of child from mother. His breathing became more labored, more erratic. Eventually his consciousness shifted beyond the scope of the room. Had his eyes been open, I know I would have seen the look that I have come to identify with those on the precipice of death: Eyes beginning to glaze, one foot in this world, one in the next, looking beyond us. There was no more color to drain from his face, his translucent skin draped across the angles of his frame. Finally, 3 days later, he returned to that from which we all come into being. The pictures at Michael’s funeral were interchangeable with my own from my childhood and college years. The lost tooth photos and pictures taken in friends’ swimming pools, huge grins on family vacations in the woods, or in front of monuments. I could almost hear the raucous whoops of a soccer team celebrating after a game and could hear the giggles of posing teenage girls with boys jumping exuberantly and mischievously behind them. The red-faced newborn peering over his mother’s shoulder and the toddler posing in overalls with his baby sister were similar to pictures of my own son. His childhood snow suit was tacked to the wall next to his college jersey. He was every mother’s child. His college soccer coach in the funeral receiving line commented on how hard my work must be. I thought back to weeping at the bedside with his family and nurse. I thought back to Michael’s bony hand reaching for mine on the bed as I walked him through a symptom management plan and his reassurance that he trusted me to keep him comfortable. I recalled sitting outside his room with his father as he cycled through despair, gratitude, and nostalgia while looking through the pictures he kept close to his heart in his suit jacket. My heart was full of awe at the unbelievably precious opportunity to enter someone’s life and family at such an extraordinarily raw and sacred time. I was full of gratitude to be able to join that journey as a human being, sharing sadness and honesty and, thankfully, hopefully, being able to bring some small measure of comfort. I responded, as usual, “but it’s so rewarding.” Driving from the funeral, I thought about his family returning home after the last acquaintance had left the funeral home, with the distractions of planning a service, choosing a casket, and greeting mourners while sharing anecdotes over. Like returning home from the hospital with your first newborn, their lives had irrevocably changed. New parents must adapt to a new presence, a new being in their life. They must make space for it. Michael’s family now had to adapt to the absence of a presence. Like a new mother’s first discovery of stray burp cloths on the couch and tiny socks stuck in the recesses of the washing machine, they will be caught off guard by his chapstick tube left behind on the coffee table and his half-read book left beside his bed. Caring for Michael showed me that my strength to be present for and bear witness to these difficult deaths is my humanity and my presence. I understand that I do not feel consumed by the heaviness of the work that I do because I distance myself from it, but because I sit with and bear witness to the human experiences, recognizing that doing so is my greatest gift. Becoming a mother changed my practice in a powerful way. I now recognize that every patient is somebody’s baby. Many of the mothers who no longer recognize their children once looked at them with an all-consuming maternal love. I return to Michael’s bedside in my mind as a way to dip back into my humanity and a grace that is not accessible in everyday life. There are no medications or procedures that will lessen the pain of loss or fear of death, and we in palliative care have only the feeble tools of medicine at our disposal. Michael’s story reminds me that in the end, the greatest tool we may have to offer is love. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of Oncology. I'm your host, Dr. Lidia Shapira, associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Rebecca Kowaloff, Palliative Care Attending at the University of Massachusetts. In this episode, we will be discussing her Art of Oncology article, At the time of this recording, our guest disclosures will be linked in the transcript. Rebecca, welcome to our podcast and thank you for joining us today. Dr. Rebecca Kowaloff: Thank you. I'm excited to be here. Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing. Are you the kind of physician who writes and has always written, or is the process a difficult emotional experience? Do you write for pleasure, or was this a one-time piece for you? Dr. Rebecca Kowaloff: This is actually a new thing for me, but I think it will become something I do more regularly. I've always enjoyed writing. I was a history major in college. I loved writing papers, but more creative writing is new to me. But since I started my current job and went into full-time palliative care, I've just been struck by some patient stories and found myself sitting on my computer after seeing them, and these stories just poured out. Dr. Lidia Schapira: And when you talk about patient stories, I imagine those are patients that you've cared for, or are you referring to writings from patients, what we generally call illness narratives? Dr. Rebecca Kowaloff: No, patients that I've cared for. Dr. Lidia Schapira: And how do you think that understanding the story of a patient can inform the work that we do and how we teach our trainees? Dr. Rebecca Kowaloff: That's a good question. I think that we sometimes lose a patient's humanity when we're caring for them and their disease and getting caught up in treatment options. And I think remembering that they have a story, that they are an individual and not like any of the other patients who might have had a similar diagnosis, helps us bring back to giving them the best care, but also, I think, brings us back to why we went into medicine. And that's what I try to pass on to trainees that I work with. Dr. Lidia Schapira: That’s so important. So in a way, it's connecting with or rekindling that sense of vocation, and that has to do with being of service, but also being attentive to the humanity, our own as well as that of patients. Dr. Rebecca Kowaloff: Exactly. Dr. Lidia Schapira: Have you recently read any books or stories that you found particularly impactful or that you would want to share with colleagues? Dr. Rebecca Kowaloff: Yes. As I thought back to some of the books that I've particularly enjoyed recently, I think that that sense of story and the story of maybe the common person or I really like historical fiction, so characters that are in textbooks, that are sort of uni-dimensional, being brought into a more three-dimensional arena, are ones that I'm really drawn to. I really liked City of a Thousand Gates by Rebecca Sacks, which looks at the Palestinian-Israeli conflict through multiple lenses and really challenges readers to see multiple perspectives. And I think that's something that I'm really drawn to in the books that I like. Another book that I really enjoyed was called The Five, and it was a look at, actually the five victims of Jack the Ripper, but looked at their lives and who they were as people. Something that I was embarrassed to say I hadn't really thought of before, but I found it fascinating not just to learn about them, but to really think about, they had their own stories, and instead they were caught up in this larger narrative. Dr. Lidia Schapira: Let's turn our attention to the essay that you beautifully wrote and said and has a title that I think needs to be unpacked a little bit. So let's just start with your choice of title. It mentions ‘labor’, and there's a strong theme in the essay of the labor associated with childbirth, but also the labor associated with losing a child. And you bring in your personal experience of motherhood. And then the other important word in the title is ‘love’. And that doesn't often appear in a medical narrative. So tell us a little bit about how you came to put these two words together and present them in the title. Dr. Rebecca Kowaloff: I've always been struck by the way that birth and death mirror each other and that on either end of those is this unknown we come from, wherever we come from, into consciousness, and then we leave into another realm that we always are wondering what's on the other side. So they're both this sort of liminal space between whatever lies beyond and then this life. And then in this particular case, I was really struck by how I was seeing this case, particularly through his mother's eyes, and was able to, I think, really appreciate a level of maternal love that I hadn't before I became a mother myself and what that must have been like for her and feeling it a little bit myself by proxy. And then recognizing that in this particular case, I felt like she had known that this death was coming for a while. The way that pregnancy, you know, that there is a birth coming and then the labor is that separation of the mother and the child. And so I tried to kind of draw that out as well, but I felt like love was what I really felt permeating this case—felt for this patient. Again, sort of that maternal feeling, but also because we were similar in age, a feeling of connection on that level, and that love was really the biggest thing that I could bring to this—that I can't fix death, I can't fix loss, but just being present with love is something I can bring. Dr. Lidia Schapira: I want to go back to that because you use the word love so organically and yet it's been a word that we've been reluctant to use in medicine. I think that there is no question that a mother feels love for her child, but the idea that a palliative care physician or an oncologist feels love for their patient is something that we don't often talk about and yet you're perfectly comfortable with that. So I want to ask you to tell us a little bit more about that because at least in my generation when we were trained, we were cautioned and perhaps even warned not to speak of love when we talked about what we felt for patients. And as a result, I think the medical literature is full of words like caring, but really the sentiment that we're talking about is love. And you very organically and normally basically say it like that and that you brought love to the bedside and that you felt love. Tell us a little bit about that. Dr. Rebecca Kowaloff: Yeah, I think you're right. We use words like compassion, empathy, caring because love is such a charged word. But I think if we can think of it as love, then it maybe becomes easier because we've all experienced love, I think, and hopefully felt love. It may be, again, give us that renewed sense of purpose to say that I just have to be a human being who feels love and that is something that comes naturally to human beings when we see others in distress or sorrow or whatever it may be. I think that makes maybe this work more accessible, more fulfilling. And I think it is what we feel and we just are afraid to use the word sometimes. Dr. Lidia Schapira: In this particular case, Rebecca, you also talked about identifying with a patient in so many different ways. You say, we could have been friends. So you talk about him as a peer, as somebody that you felt some feelings of companionship towards, and then you also talk about him as his mother's baby. And I thought that was really a beautiful and very original way of presenting the complexity of the feelings you had. You write in your essay that you normally don't weep or cry at the bedside, but there was something about this particular bedside situation, and Michael in particular, that led you to weep. Can you share a little bit of what that was like for you? Dr. Rebecca Kowaloff: Yeah, I think I had been, as I say in the piece, thinking of this as his mother watching her baby die. And that is, of course, an incredibly emotional concept for any mother. And then when he came to terms with it himself, I think it was tears of relief that he was not accepting, but at least he was acknowledging, but then also in terrible sadness that here, indeed it really was happening and that she was watching that happen. I was glad that that came out, not only for him and his family to see that I was there with them in that emotional space, but it just felt very cathartic to let those tears that I'd been letting out in the car actually come out at the bedside but just also to know that that was possible for me to do. And that just felt very connecting to the patient and their family. Dr. Lidia Schapira: And I imagine it might have even felt freeing for you in the sense that you bring your genuine person to the bedside and that you can allow yourself to connect and express your own emotions without that necessarily distracting them from their sorrow or drawing attention to you or in any way diminishing your expertise in that setting. Dr. Rebecca Kowaloff: Exactly. In palliative care interactions, I teach my trainees that if the people don't cry that we may not have gotten to the heart of the issue. And so I think tears are a sign that... /episode/index/show/aoopodcast/id/26866701

At a Loss: Patient Deaths and Clinical Research Coordinators 04/25/2023

At a Loss: Patient Deaths and Clinical Research Coordinators Listen to ASCO’s Journal of Clinical Oncology essay, by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials. TRANSCRIPT Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP () As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient’s chart to coordinate study appointments and collect clinical information. When opening a patient’s electronic health record, a snapshot immediately appears on the screen with the patient’s medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient’s name], who is deceased. Date of death: [date].” We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study. In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors’ laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients. CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works. When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us. As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient’s death has a profound impact on us. We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden. Knowing that patients with serious illnesses die did not protect or prepare us for the waves of emotion we experienced when a patient in our study died. Some of us have had personal losses after which we also thought: “Maybe I do not have the right to be upset”— a childhood friend we are no longer close to dies, or we learn that a good friend has had a miscarriage—and our grief is confounded by our feelings of guilt. We experience disenfranchised grief1: grief that is not openly acknowledged, socially accepted, or publicly mourned. For us, there is no place to grieve with the patient’s family or the clinical care team. Over time, our grief builds up, and it is hard to find a way to release it. Friends and family do their best to understand, but because they do not work in health care, they can find it difficult to grasp the complex emotions we experience. We seek solace with each other, but lacking coping mechanisms or clear direction, we ultimately bury our grief to continue doing our job. Oncology and palliative care clinicians routinely care for seriously ill and dying patients. To learn how they deal with their grief, we asked our Dana-Farber Cancer Institute study principal investigator and three palliative care clinicians (two physicians and a psychologist, who is a bereavement expert) how we could begin to process our otherwise disenfranchised form of grief. We learned that Dana-Farber Cancer Institute palliative care clinicians hold weekly bereavement rounds or remembrance2: a time carved out every week to read a poem or listen to a song and then share meaningful stories about each patient who touched their lives and had died that week. We adapted the bereavement rounds for our laboratory group of CRCs and principal investigators. We spoke about each patient we had lost, sharing the things that most affected us over the course of our interactions with them. We spoke of Jack (names are changed to protect patient identities), who was beloved by everyone in the clinic. His hearty laugh could be heard throughout the halls whenever he came in for a visit. On the last clinic visit before he died, Jack’s appointment was delayed, and he sat in the waiting room for over an hour. When we offered to help find him a room, he stood up and offered a hug in gratitude. The memory of such a seemingly routine request stayed with us for weeks after his death. When we spoke about Jack and his family during these bereavement rounds, we were able to share the wave of grief that overwhelmed us, that grief we had kept suppressed for over a year. We also shared stories about James (names are changed to protect patient identities) and his wife; they met in college and had been together for more than 50 years. Throughout his treatment, James told us often how upsetting it was that his immunosuppression prevented him from spending time with his grandchildren in person. Our hearts broke thinking of his wife and the reunions with grandchildren that would now never happen. Surprisingly, speaking about patients in our studies who died felt like a welcome release; finally sharing these memories and the worries we had harbored since each patient’s death was restorative. Bereavement rounds have been invaluable in processing the grief we experience throughout the year. We found ourselves wishing we had known of them sooner, although it would be hard for CRCs who do not work with palliative care programs to be told about them. Through our quarterly bereavement rounds, we have learned to foster healthy grieving processes, creating time to honor each patient and acknowledge their impact on us. This investment in our health and well-being has been crucial to maintaining resilience in the face of challenges that our job entails. We feel cared for by the larger program and know it is investing in us as whole people. Our professional development now extends beyond Health Insurance Portability and Accountability Act training and Collaborative Institutional Training Initiative certification to include education in bereavement, burnout, self-care, and compassion fatigue. Direct supervision and mentorship around grief and loss incorporated into our routine check-ins and meetings have been helpful, as well as an open door policy with our supervisors for informal support. We frequently debrief in response to challenging interactions or situations, including the death of a patient. The designation of this safe space has emphasized a culture of support in our team settings. Learning to lean on each other when faced with emotional experiences has become a core aspect of sharing regular study responsibilities, especially when a patient dies. One practical strategy which has helped us is going on a grief walk. After learning of a patient’s death, we stop work and take a 15-minute walk, either alone or with a colleague. We give ourselves the space and time we need to begin our grieving process. Losing patients is part of our job as CRCs, as it is for many health care providers. Implementing programs and routines to understand and lessen the emotional burden on us has helped us better navigate our duties while fostering the coping strategies we need to do our job well. We want to learn and to immerse ourselves in academic medicine, and to do this, we need the support of our research team and institutions if we are to navigate the grief we feel when our patients die. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Hermioni Amonoo, Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. In this episode, we will be discussing her Art of Oncology article ‘At a Loss: Patient Deaths and Clinical Research Coordinators’. At the time of this recording, our guest has no disclosures. Hermi, welcome to our podcast and thank you for joining us. Dr. Hermioni Amonoo: Thank you, Dr. Shapira, for the warm welcome and introduction. Dr. Lidia Schapira: Let me start our show by asking this very broad question, and that is how did this article come about? We normally have first-person reflections in Art of Oncology, but this is a group reflection pulled by collective first-person plural, and clearly, you played an important role. How did this start? Dr. Hermioni Amonoo: So as you know, my line of research is trying to understand the well-being needs of patients with hematologic malignancies who are undergoing hematopoietic stem cell transplantation. So this is a really seriously ill group of patients who we are trying to understand what well-being looks like for them in the midst of a serious illness and quite intensive treatment with several toxic side effects and a prolonged recovery. And so in doing this work, unfortunately, a lot of our patients, even in our trials, pass away either from their diseases or complications from the treatment. And so I have noticed over the past few years that a lot of my clinical research coordinators who are young, 20-something-year-old, freshly minted college graduates, who are very critical to the work that we do, have to grapple with the loss that comes with working with our patient population. A lot of these individuals take on these clinical research coordinator roles because they want firsthand experience with patients, but that is one thing. But then working with patients who you bond with, even from mundane conversations, and then having them die was a huge sense of loss and frankly, a bit of a surprise for them. And so, as a psychiatrist, used to sitting with people in grief and helping them reflect different losses that they encounter, but I quickly realized that supporting my CRCs was a little bit more than even what my training had prepared me for and definitely, my training as a researcher hadn't prepared me adequately to be able to support these young clinical research coordinators. And so in our struggle, or I would say I've had a burden for this for several months, I would say a couple of years now. And so one of the ways that I struggle, I manage different burdens is to write about it. So I sort of shared the idea with my clinical research coordinators, a couple of them now, and they really caught on to the idea. And so we decided to share what our experience has been with this. And then I also reached out to a couple of colleagues in palliative care and the director of bereavement services at our cancer center to also support us, or support me to support our clinical research coordinator. So that's sort of how this idea came about. And that's a really long-winded response. I'm sorry. Dr. Lidia Schapira: It's so interesting to think about this, writing as a tool for processing a difficult experience is something that we often discuss with our authors for first-person narratives. What makes this entry and this essay so original, in my opinion, is that this is a group effort and you have so beautifully spoken about the need to, especially for these very young 20-something-year-olds, to process this very difficult experience of grief. And in addition to this manuscript, you speak here of doing this through some form of bereavement rounds, something that you've taken from a clinical setting where we find that it helps support people working with patients who are very ill and who experience a lot of losses to the setting of a research lab. Tell us a little bit about how that idea came about, how you're implementing this very original and useful tool in your own group. Dr. Hermioni Amonoo: It started out with, before instituting what we call remembrance rounds, my CRCs would typically call me whenever they heard of a patient's death. They will literally call my cell phone, I'll stop everything and sort of take a moment of silence with them and ask them how they were doing and check in via supervision and things like that. But it definitely felt inadequate considering the amount of pain that they experienced with the whole process. And so our palliative care teams have this remembrance of bereavement rounds every week. And obviously, on a palliative care service, they have a lot of patient deaths per week where pretty much every clinician on the team would get together for half an hour to an hour. You have different members leading these rounds where someone will share about a patient who had passed away, a memory or something about the patient, and the whole group will reflect on it. For our purposes, we thought it would be great to adapt that for like a lab setting. Fortunately, we don't have a huge volume of patient deaths per week but we realized that a month or every three months we would have close to between five to ten patients who would die from our trials, which is, again, a lot. And so, in conversations with our Director of Bereavement Services and our palliative care colleagues, we picked that time frame every quarter to get together as a lab where the names of patients in our trials who have passed away would be shared. And different members of the team who have interacted with a given patient will share, like a memory, either from a conversation, a poem, or a song, or something that brought to life the individual as a way to just process and acknowledge the loss that comes with losing patients. And I think it's also even more critical in the lab setting because, unlike the clinical setting where there is some form of a closure because as a clinician you may be able to call the patient's family and you sort of have permission to do that. But in the research setting, my CRCs felt like once they recorded the patient had died, they had no business in calling family members or doing anything like that. And so it was helpful to create the safe space to process all of that. In addition to the remembrance rounds, we also arranged with our bereavement services in the cancer center where there are actually cancer center bereavement cards where clinicians could write notes to families. And so our CRCs have started doing that as well, where we could use the cancer center template and if they wanted to, could write a note to the family as a way to share how they were feeling about the situation with the families as well. So that is something that in addition to bereavement rounds, we started doing which is also helpful. Dr. Lidia Schapira: I was very moved and I was very struck, as were the reviewers, by a few things in your article. One, is that you take responsibility for supporting your research assistants. Two, is that you take on what I will say is an almost mentorship role for helping them process this in a way that sort of still leaves them engaged with the content material and stimulates their growth as professionals. And hopefully, some of them will be future medical students, physicians, and maybe even oncologists and psychiatrists. In fact, our reviewers wrote that after reading your paper, they had implemented similar protocols in their own labs and that's pretty amazing. So tell us a little bit more about how your efforts, you think, contribute to creating a more supportive culture in general in our workplaces, both in the lab and research setting, but also this translates into clinical settings. Dr. Hermioni Amonoo: So I think maybe more so than others, I see my clinical research coordinators as really critical partners in the work that we do, especially in clinical research. They are the face of the trials that we do in some ways. They meet all our patients who are eligible for our studies. And they do spend a lot of time with them, especially in the longitudinal studies that we do, where there are multiple assessments. They are calling patients, they are speaking with them in waiting rooms, and they are really essential to a lot of things that we do. When I think about how much we compensate them monetarily wise, it really isn't a lot for really talented college graduates. And so I think, for me, I view an intangible way of making this whole experience worth it, based on how much they contribute to my research program, is to really mentor them. I think as an individual, mentorship has been very critical to my own career development, and working and mentoring CRCs is one way that I pay it forward. And I think because that is very much a part of our lab and our team culture, the CRCs are also willing to go above and beyond and really contribute to the work that we do. Because there is so much that as a principal investigator, you can't always be with them 10 hours in the day that they are working. But when you really get them to latch onto the heart of what you're doing and knowing that they are also going to grow professionally and explore different things about medicine, in general, has been really rewarding. In fact, I've had research coordinators who came... /episode/index/show/aoopodcast/id/26637039

Capturing Memories for Children with Cancer in a Low-Resource Setting 04/11/2023

Capturing Memories for Children with Cancer in a Low-Resource Setting Listen to ASCO’s JCO Global Oncology's essay, “Capturing Memories for Children with Cancer in a Low-Resource Setting” by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. This Art of Global Oncology essay is followed by an interview with Silverstein and host Dr. Lidia Schapira. Silverstein shares her launch of a framed picture legacy project in Malawi for those with childhood cancer in a low-resource setting. TRANSCRIPT Narrator: Capturing Memories for Children With Cancer in a Low-Resource Setting () I was the paparazza, capturing salient moments from our program’s “Palliative Care Day” where children with cancer and their guardians played games, completed artwork, sang and danced, and enjoyed meals together. It was a precious day for these children with life limiting disease to shed the weight of their diagnoses and instead share laughter and joy with one another. As a pediatric resident on a global health year in Malawi, I was invited to document our team’s activities with the intent to share with potential donors. However, with a click of the camera’s button, I realized the opportunity for an unintended greater impact. I scrolled through the day’s pictures and could not help but think the recipients of the pictures should not be strangers, but instead the families or even children themselves. Although families had already provided consent for each picture, they never expected to see them. Pictures capture moments in ways words cannot describe. Coming from a Western society where we celebrate and honor life in pictures, I wondered what happens when you do not have a camera or phone capable of capturing these events. What visual memories do you have when your child dies? Does it feel differently when remembering a lost child without pictures to look at? Do vivid memories fade and, in time, make it difficult to imagine your child’s face? As I reflected on this, I acknowledged the overwhelming frequency of childhood cancer death in our setting—in contrast to a .80% survival rate for childhood cancer in the United States,1,2 the childhood cancer mortality rate is estimated to be as high as 90% in sub-Saharan Africa.3 Most of these children present with advanced disease, where disease directed treatment is less likely to be effective,4 and limited availability of medical and supportive care further contribute to poor outcomes. Although progressive medical infrastructure has sprouted across regions of sub-Saharan Africa to help address these disparities, widespread gaps exist in interdisciplinary services. Families of children with cancer face substantial psychosocial, emotional, and spiritual distress. Many families are fortunate to have robust community support, but we must consider how we, as a medical system, can further support families. Our role includes providing comfort to families, especially when curative medical therapy is not an option and a child’s final days near. We must integrate humanities and holistic support for our families as we scale up global health programs, just as is already done in high income settings. So, when I set my camera aside, I earnestly turned to my local colleagues for their counsel. They grinned as they confirmed the potential value of my blossoming idea. I went to a nearby store where I printed the pictures and purchased basic supplies—glue, string, tape. We collected old boxes from prior hospital pharmacy deliveries and bought local vibrantly colored fabric—chitenje—from the market. From these materials, our first frame was designed. These local materials were obtained on a minimal budget. I shared the first picture and its frame with our social worker who presented the aunt of P with the picture (Fig 1); P had leukemia and had died recently from complications associated with central nervous system disease. In his picture, there he was, coloring during the event we held a few weeks prior. He wore sunglasses and shared that smirk we had all quickly fallen in love with. As she graciously accepted the frame, the corners of P’s aunt’s mouth turned upwards into a rarely seen smile; she bowed her head silently as we spent a moment remembering P and sharing in his memory. The next week, I had the privilege of joining our team on a bereavement visit to the home of B’s father. B had recently died at home and our team visited to provide grief support and share prayers together. We sat in a circle on well-worn couches and chairs as B’s father offered he did not have any physical belongings or keepsakes of his son beyond leftover medical supplies from home wound care management; any clothes or toys were passed along to other children and other families. As he shared with us, he removed a cloth covering their makeshift table to reveal a cardboard box, inside of which he retrieved these remaining medical supplies so they could be given to another family. We pulled out a framed picture of B that was taken before the program had formally started but was printed and framed just as the others. I watched as B’s father’s eyes welled up with tears in surprise and gratitude; he accepted the gift and stood to shake each of our hands. One by one, we started taking more pictures. My colleagues explained the idea of the project as we obtained consent from each new family. Often we were met with a bit of initial skepticism but also willingness to participate. Pictures were taken away from the crowded medical wards and instead in courtyards with benches, grass, and trees as possible. As we delivered the first batches of framed pictures to families, the skepticism was quickly replaced with enthusiasm, and families embraced the program. We could not seem to print consent forms fast enough, as caregivers changed outfits, brushed their hair, and sought us on the wards to request portraits. They claimed their pictures like prizes. Some of the children lived to see them. Others died. The picture project served as emotional support for families, most of whom had or would lose their children. In time, the program transitioned from volunteers constructing frames to caregivers themselves making the frames together; they sat in open green spaces and connected, providing an organic social support system for one another. With the start of the COVID-19 pandemic, I returned to the United States to continue my training, and my colleagues in Malawi faced new challenges of their own. Just as staffing shifted at my home institution, so too were modifications made in Malawi to optimize patient and team safety. Although our framed photograph program paused similarly to many supportive care programs across the world, months later, my colleague shared a picture with me: a group of caregivers gathered on a lawn, a pile of frames and photographs scattered on the ground, the program restarted, and the memories being created and shared once more. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. In this episode, we will be discussing her Art of Global Oncology article, ‘Capturing Memories for Children with Cancer in a Low Resource Setting’. At the time of this recording, our guest has no disclosures. Allison, welcome to our podcast, and thank you for joining us. Dr. Allison Silverstein: Thank you so much for having me. Dr. Lidia Schapira: Allison, your essay captures an experience that you had when you were working in Malawi as a medical resident or pediatrics resident. Tell us a little bit about that. Dr. Allison Silverstein: Thank you. I participated in a four-year pediatrics global health residency where I completed three years of my residency in Houston, Texas, and one year of my residency abroad, working clinically in Lilongwe, Malawi. During that time, I split my time working with children who have HIV, as well as working in the pediatric hematology and oncology wards, both inpatient and outpatient. Dr. Lidia Schapira: Where did your passion for global health start, and where is it now? Where is it taking you? Dr. Allison Silverstein: I think I have always had a love of traveling and experiences, learning about new cultures, meeting new people. And when I was in medical school, I participated in a one-week more voluntourism-type trip, admittedly. And I remember handing a woman who had rheumatoid arthritis, like 30 pills of a medication, and leaving that encounter and feeling just gutted that either these medicines would work and in 30 days, she wouldn't be able to get more. Or they wouldn't work, and she wouldn't be able to follow up to try and help relieve her symptoms. And I came back from that trip and was just really excited to engage more in really sustainable practices. And so I've spent about two years cumulatively living abroad in a few different countries in Africa, and that has cultivated a passion for global work in terms of capacity building and policy, done some research, and then more recently, really engaging on a clinical level. Dr. Lidia Schapira: What was it like as a medical resident and practitioner in Malawi? Dr. Allison Silverstein: Gosh, I miss that time so much. Every day I was excited to go into work, and I felt this just passion and, truthfully, a personal value that I was a part of something really meaningful. I worked with just a group of incredible humans in all sorts of different disciplines, and being able to learn together and grow together was amazing. It was admittedly also scary at times. I was a resident and had to really acknowledge my limitations and what my comfort level was, coming from a very different setting. But I think I really ultimately embraced that and grew a lot throughout that experience. Dr. Lidia Schapira: So, in your essay, you describe meeting kids and families with cancer and introducing to them some new ideas. Tell us a little bit more about that. Dr. Allison Silverstein: I had a pretty decent camera, very point-and-shoot, knows more than I do about how to take pictures. And I remember participating in what we were calling a palliative care day, where children from their community and their families, as well as some within the hospital, were able to come and just create joy altogether. There was singing, there was dancing, and someone had asked if I would take some pictures to share with potential donors for the program. And, of course, I was ecstatic to get to join and be a part of things. And as I took pictures, I looked at them, and I just had this kind of an aha moment of this blossoming idea that the recipients of these pictures should really be the children and their families. Knowing that most of the children, especially the ones who were there for that particular day, ultimately would die. I approached a few of my Malawian colleagues who were so excited about this idea, and together we put together a project that I think we're all really proud of, as it has continued for now a few years and has impacted a lot of families. Dr. Lidia Schapira: Talk a little bit about this idea of memories and having a photograph that helps families who are grieving keep that memory of their child so present. Dr. Allison Silverstein: I think in general, in Western societies, within my family and my friends, pictures are such a common way to pay respects and to remember people. When I'm feeling nostalgic, I go through old pictures. I've lost all four of my grandparents and I'll look back at pictures that we took together and it just brings up a lot of memories and a lot of joy of the time that we spent together. With social media, people will post pictures of their loved ones after they die, and I think that's such an ingrained part of how we grieve and how we process during bereavement. And the idea to me that someone might not have a camera phone or a camera and therefore might not have any pictures of their loved ones when they die. That concept, when I first thought of it, very much shook me. It rattled me to my core thinking about how meaningful and important those things are for me. And it's such a small, simple thing that we absolutely take for granted. Dr. Lidia Schapira: When we think about resources and disparities or inequities in care, we don't usually think about it at this very granular level. I'm curious to learn a little bit more about how you develop this concept and transformed an idea into really a project and then how you got the project to continue even after you left Malawi. Dr. Allison Silverstein: It's a great question. I think in global work in general, it's really important to be intentional about surveying your community about what the needs are and not projecting from your internal opinions what those needs are. And so, of course, I took this picture, and there was this light bulb moment for me, and then I asked myself to step back and say, "Hey, is this truly meaningful? Is this truly valuable? And how can we create something that is sustainable?" So I asked multiple Malawian colleagues who kind of have different roles or disciplines on the team and said, "Hey, this is what I'm thinking. What do you think? What are your ideas?" And really work collaboratively, knowing I have different perspectives and resources and experiences, and we need to really make it, not me coming in and projecting those things. And so ultimately, everyone was very excited about this idea, and so we started tinkering with a design. Luckily, there was a Kodak store right next to where I got my groceries, and so I was able to print some photos very easily. And then in Malawi, there's something called Chitenge, which is this beautiful fabric that people will wear, and it will become different articles of clothing, and you can get yards of the fabric very inexpensively at a market. And so I took some scraps that I had and went to the pharmacy and got some cardboard boxes that were left over from prior delivery. So I was really trying to think about things that would be very low cost and repeatable and ultimately designed the first frame. After we had created this first prototype, we internally, the direct members of the team, were the ones who were making them initially, and we started training volunteers in the hospital. And ultimately, the current iteration is that guardians make their own frames, so they sit on a lawn together, and it serves as this opportunity for them to connect and share and serve as kind of a psychosocial support. This project, we started it towards the end of my time in Lilongwe and with COVID in March of 2020. I was not prepared to be coming back to the US. I was supposed to remain abroad for another month. And I remember getting a call saying, "You need to leave before there aren't any more flights." I said, "No, I can't. I haven't handed off this project yet." And so I met with our team. I created step-by-step instructions on how to make the frames and how to use a camera. They thankfully had a digital camera that they had used for some clinical work previously, and so got those nuts and bolts in place, and then I left. And it was about six months before I received a WhatsApp message from the social worker in Malawi saying, "Your dream lives on." I was at the airport. I don't remember where I was flying, and I just started crying. Because this was a project that I thought was valuable, and it was a project that I had engaged with colleagues and felt like they also thought it was valuable. But I wasn't sure until that moment that I received that message how meaningful and valuable it was perceived from the team and the families who were there. Dr. Lidia Schapira: Such a beautiful story, and I'm so glad that you chose to write and share it with your colleagues and that we were able to give it some exposure in the journal. I wonder if you can share with our listeners what other projects you might be involved with, now, again, thinking globally. Dr. Allison Silverstein: I am continuing to do some work with the team in Malawi and in Houston on a global scale. I did my fellowship training at University of Tennessee Health Science Center in Memphis and have done some global work with the team at St. Jude. And I’m now getting established in my new role at University of Colorado. And our pediatric palliative medicine team is exploring our ‘what's next’ in terms of being leaders within the global health world. And so a lot of little things in progress and trying to figure out what's next. Dr. Lidia Schapira: What opportunities do you see for collaboration in the area of global health, especially global palliative medicine and oncology, the global health infrastructure? Dr. Allison Silverstein: The global health infrastructure is rapidly evolving. Even since I finished medical school until now, I've seen changes in resources and in opportunities, and it's really inspiring to see. A lot of that focus is on those medical interventions, and I think there's a lot of opportunities to think creatively how we can support families beyond just kind of curative or palliative treatment, beyond the medications, beyond the surgery, and think from a very holistic level of involving multiple disciplines and supporting families along their whole journey. Dr. Lidia Schapira: I wonder if during your time in Malawi and through this project of capturing the photos, framing, and then presenting them to families, you had any personal connection with members of families and if you can share with us perhaps some of their reactions or what they said to you. Dr. Allison Silverstein: I very much tried to be a support system for this program and not the face of this program, and so I tried to take a step back and empower my colleagues to really have an active role in the execution and the vision itself. I shared a couple of meaningful encounters in my narrative. I think one of the really special stories I have actually doesn't directly involve me, but I mentioned that I stay in close touch with a social worker in Malawi. And she recently went to a home for a bereavement visit after the passing of a child. And when they entered the home, there were three frames on the wall with pictures that they had taken while the child was alive. And seeing that picture, seeing that moment that the family had recognized the value and taken the initiative to not only accept and embrace these pictures and their frames, but to hang them in their home. That was a really special moment for me. Dr. Lidia Schapira: It sounds like it's been a very moving experience, very meaningful for you. And I wonder if you can reflect a little bit on how this experience perhaps has changed the way you think about palliative medicine and pediatrics. Dr. Allison Silverstein: I think I have realized how much of our role in medicine is about the little things and recognizing that the little things to me might not be little to someone else. And so taking that moment to listen and to hear a family's needs and think creatively and problem solve, no matter what they are articulating, this is something that I really try to practice both in my role in Denver and as I think of other roles that I fill and will grow into. And this project has really helped me frame some of my work in terms of those little things, as well as really enhanced my personal practice of gratitude and appreciation for the little things in my life. Dr. Lidia Schapira: Allison, thank you so much for your words, your wisdom, and the work that you're doing. I hope you continue to be inspired and creative, and... /episode/index/show/aoopodcast/id/26429838

First Cousins Once Removed: Respecting A Loved One's Wishes at the End of Life 03/28/2023

First Cousins Once Removed: Respecting A Loved One's Wishes at the End of Life Listen to ASCO’s Journal of Clinical Oncology essay, “First Cousins Once Removed” by Dr. Matthew Farrell, a radiation oncology resident at UCLA. The essay is followed by an interview with Farrell and host Dr. Lidia Schapira. Farrell paints scenes of how different family dynamics can come into play when advocating for patients. TRANSCRIPT Narrator: First Cousin Once Removed, by Matthew J. Farrell, MD, MFA () When I was a kid, long before I wanted to be a doctor or had even heard of oncology, I dreamed of becoming an actor. I grew up in Sacramento—not exactly the beating heart of the film industry—but my mother’s mother lived in Santa Monica and we would stay with her for a month every summer. My father would unashamedly sneak me into movie premieres in famous theaters, and he bought us season passes to Universal Studios Hollywood. Despite having a serious job—as a psychologist in the emergency department—he was a kid at heart. Los Angeles was our promised land, and our shepherd was my father’s cousin John, my first cousin once removed, who lived in West Hollywood and was a living, breathing actor. John wasn’t famous, not yet. He was in his late 20s, just starting out, doing mostly background work and some commercials while working as a waiter at the original Cheesecake Factory in Beverly Hills. All the staff loved him there, so much so that they would give us free pieces of cheesecake just for being related to him. John was generous, outgoing, expressive, and talented. Success seemed just around the corner. One challenge for him was his voice. He had a thick Bronx accent, which would have been perfect if he had been auditioning for Raging Bull but which otherwise narrowed his prospects. He hired a voice coach to help him erase his accent. But that didn’t mean he was trying to erase his New York roots. He was proud of his upbringing and family, coming from a long line of police officers, burly men with strong jaws and thick arms and outdoor voices who seemed to be the very genesis of their own stereotype. And as his Bronx accent faded, he was teaching it to me. He said he would take me to a baseball game at Yankee Stadium one day, and he imitated the beer hawkers who walked up and down the aisles, calling out to the crowd, “Get your beer here,” but pronounced, “Getcha bee-ah hee-ah!” John was the first person I distinctly remember being in perfect shape. He was a sight to behold—muscular and solid, yet graceful and light on his feet. In addition to being an actor, he was training as a dancer. Coming from generational athletic ineptitude myself, I was enthralled. He taught me how to moonwalk and do bicep curls. I would walk up to my mother and flex my tiny muscles, imagining a day when I would be as strong as John. One summer, John was much thinner—his face hollowed out, his previously bulky arms as lean as my own. What I only vaguely understood at the time was that he was gay, and he now had AIDS. This was the mid-1990s, and highly active antiretroviral therapy was on the horizon but just out of reach.1,2 His treatments failing him, he became desperate for a cure. He did twice daily coffee enemas, choked down repulsive herbal concoctions, and visited New Age visionary healers. For a long time, he remained optimistic. He was in constant contact with his agent, seeking out auditions even as his strength waned. He wasn’t only a waiter at The Cheesecake Factory and he wasn’t dying of AIDS; he was an actor who was going to be healthy again soon. Occasionally he would call my dad, buoyant with hope, “The virus is gone. I’m cured.” Of course, he wasn’t. My father never tried to talk John out of pursuing alternative therapies, though he considered doing so many times. The frantic search for a reprieve from death can take us many places, and it is not to be pitied. But how do you also protect your loved ones from harmful remedies and predatory scam artists? How do you provide the best treatment when there is no good treatment? In all my years, all 10 of them, I had thought that doctors knew everything, and if you went to them, you would get better. But John wasn’t getting better. Together with his doctors, we embraced helplessness. His CD4 count fell to zero. He developed skin lesions from Kaposi sarcoma. He was repeatedly hospitalized with Pneumocystis pneumonia. His organs began failing. Ultimately, he decided to leave the hospital on hospice. It was only then that he told his parents he was gay and had AIDS. At first, his parents couldn’t believe he was gay. They told my father it was a phase, possibly brought on by his living in Los Angeles, a side effect of being an actor and dancer. Later, at his memorial service in New York, they would tell everyone he had died of a rare cancer. My father remembers someone asking John’s mother what kind of cancer it was, and she said, “I don’t know. It’s very rare.” During my winter break from school, my family visited John in his apartment. By that time, he had needed to quit his job at The Cheesecake Factory and stop taking auditions. His friends at the restaurant had thrown him a party and still came by his apartment most days. He lay in bed, drowsy and mildly delirious, too weak to stand. Even in this state, he kept trying to sit up to get us something to eat or drink. “I have cheesecake,” he said several times. “Let me get you some cheesecake.” Just a week later, on the day after Christmas, John lost consciousness. His kidneys weren’t making urine, and he was uremic. My father urgently updated John’s family in New York. His mother, father, and three sisters with their husbands flew in that day and crowded into John’s small West Hollywood apartment. For the first time, they met John’s partner, Kevin, and five of their friends, gay men who had taken turns caring for John to make sure he was comfortable and never alone. Kevin was tall, elegant, and gentle. He was as introverted as John was extroverted, and he wouldn’t have been caught dead on stage in front of an audience. He ran his own successful small business and had a quiet self possession. John, though he rarely showed it, was insecure about his slow progress in the acting world, and I think Kevin helped him feel more at ease. As a medical professional and the closest relative on the West Coast, my father had served as the point person for the hospice physician. He reported the latest news: John likely had just hours to live. John’s New York family, previously shielded by distance, was caught off guard. And there was an uproar. The five stages of grief multiplied to 25, occurring in no discernible order—undulations of shouting and crying and jostling that rolled through the group like The Wave through a baseball crowd. At first, they wanted to take him off hospice. They looked ready to carry him out the door to the nearest hospital. They said his decline was too sudden. It just wasn’t right. There must be something he hadn’t tried. For every desperate hope they volleyed, my father sensitively explained what could and could not be done, and, more importantly, he described John’s wishes. They gradually realized that saving him was impossible, and not what John needed anymore. At last, everyone seemed on the same page. Everyone but John. Day by day, he held on in his unconscious state, not crossing that final threshold, as if something were holding him back. John’s family became increasingly exhausted, confused, and frustrated. They couldn’t eat or sleep. On day four of John’s marathon survival, we called in the hospice nurse. By this time, my grandfather—John’s uncle— had also arrived. The nurse gathered everyone together and explained that it was often helpful to talk to your loved one, conscious or not, to say goodbye. People who are dying may feel obligated to cling to life for their family’s sake. They may need our permission, even our encouragement, to let go. And so, one by one, we all entered John’s bedroom, knelt beside him, and said what we needed to say. And then, it was my grandfather’s turn. By way of introduction, Grandpa Joe, my father’s father, was raised in the Bronx by a stern mother and career soldier father. He was a businessman by profession and by religion. He rose in the ranks of multiple companies, eventually becoming the president of Hires Root Beer, a company that expanded during his tenure but was eventually bought by Orange Crush, which in turn crushed Hires Root Beer and made a lifelong enemy of my grandfather. (In my family, we do not drink Orange Crush.) Grandpa Joe never surrendered without a fight. Accompanied by my father and me, Grandpa Joe marched up to John’s bed and bent down beside him. “You can fight this!” he said, shaking his fist. “I’ve had illnesses all my life and I came out on the other side. Did I let prostate cancer beat me? Hell no!” “Wait, Dad,” my father said. “Wrong plan.” “What?” Grandpa Joe said. “We had a whole conversation about this.” “When?” “Just now, with the hospice nurse. We need to let go, allow John to pass on.” “That’s not what I heard.” “That’s becoming clear to me.” My father reviewed the plan, slowly, but no matter how well you explain yourself, sometimes people hear only what they’re capable of hearing. Grandpa Joe couldn’t surrender. He argued and fumed, eventually stormed out. So my father said goodbye for him. That night, John died. I doubt the timing of his death was related to our collective send-off, but it sure felt like it was, and that will do. The next day, everyone assembled in John’s apartment for the last time to decide what to do with his body. The family wanted to take him back to New York for a traditional burial. But there had been talk that John’s Los Angeles friends were planning to have him cremated. As if about to face off, two groups formed in opposing semicircles of folding chairs—the family seated on one side, and Kevin and his friends on the other. John’s father, Hank, seemed ready to fight, his whole family there to back him up. Grandpa Joe kept saying we needed to put John on a plane and get him out of there. In medical school, we learn that not all family members are created equal; when patients can’t make decisions for themselves and there is no living will, you turn to the spouse first, adult children next, then parents, and so on. There is even a mnemonic (one of the clunkiest in existence) to help you remember the ranking: the Spouse ChiPS in For the patient—indicating Spouse, Child, Parent, Sibling, and Friend, in that order. Following this rule, Kevin would have come last. He and John weren’t married, and gay marriage wasn’t even legal then. My father, a child of the sixties, wasn’t a fan of hierarchies. As a psychologist in the emergency department, he had always strived to foster a unanimous meeting of the minds and hearts. To make things a little easier on people like him, he says it is never too early to tell anyone and everyone what you want in life and in death. Then, importantly, write it down, in an advance directive, on a POLST form, and maybe even on a few napkins scattered throughout the house. Hank fired the opening salvo: he told Kevin that they were going to take John back to New York. Their community expected a traditional burial, needed it. Kevin listened quietly until Hank finished. With a softspoken grace, he looked Hank in the eyes and told him he would never do anything against the family’s wishes. If they wanted a burial in New York, he would help carry the casket. But, he said, John had told him many times that he wanted to be cremated and have his ashes scattered on Maui, at a certain overlook they had visited together. There was a long silence. Hank looked around, at his wife and family, at Grandpa Joe, all of whom seemed to be waiting for him to deliver their counterpunch. But then he lowered his head. He started crying into his hands. A minute passed, and then he sat upright, sniffed, and nodded. In a clear, firm voice, he said, “That’s it. That’s what I want for John. I want you to take him to Maui.” In perhaps the only true miracle I have ever personally witnessed, Kevin and his friends lifted from their chairs in perfect unison, crossed the small living room, and flooded the family with hugs. Everybody cried, and the many headed beast of our congregation dissolved into a sea of affection. Kevin did go to Maui to scatter John’s ashes. Afterward, John’s family celebrated his life with a memorial service at their church in New York. My father gave the eulogy and Kevin sat with the family. All of this was a long time ago now. John would be in his fifties. He would have mastered a Hollywood accent. His big break would have come. He would have taken me to the Oscars. I moved away from California to go to graduate school and medical school, but eventually, I found my way back to Los Angeles. I still go to iconic theaters. I finally bought season passes to Universal Studios Hollywood. And like everyone else in this town, I’m trying to write a screenplay. But I’m not an actor. I’m not remotely famous. I’m a radiation oncology resident. I’ve learned a few things since the 1990s, and so has the rest of the world. It still devastates me that John just missed the major advances in care. I think about him regularly during my training. In oncology, life-prolonging breakthroughs are frequent, which inevitably means that some people will be among the last to miss out. Some people, and their families, will look to me for hope when there is none. In their entreaties, I see shades of my own loved ones—my father’s diplomacy, Grandpa Joe’s doggedness, Kevin’s advocacy, Hank’s compromise. Most of all, I see glimmers— brief resurrections—of John, whose disease stripped away so much, but left in clear relief his kindness and humanity. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we're joined by Dr. Matthew Farrell, a radiation oncology resident at UCLA. In this episode, we will be discussing his Art of Oncology article ‘First Cousin Once Removed’. At the time of this recording, our guest has no disclosures. Matt, welcome to our podcast, and thank you for joining us. Dr. Matthew Farrell: Thank you so much for having me. Great to be here. Dr. Lidia Schapira: It's our pleasure. I'd like to start this conversation just asking a little bit about your reading preferences. Are there any books that are on your figurative night table right now that you'd like to recommend to our listeners? Dr. Matthew Farrell: Yeah, a lot of times that night table is very figurative in that I am listening to audiobooks. Living in LA, I spend a lot of time in the car, so I listen to a lot of books. But I do like to physically read certain books, and one of those recently was George Saunders' new collection of short stories, Liberation Day. He is a wonderfully creative, funny, warm-hearted writer of short stories, which is one of my favorite forms. It's what I've written the most and what I studied the most back when I was in school, taking classes, undergraduate and graduate in creative writing. Dr. Lidia Schapira: Tell us a little bit about your passion for writing and how you have integrated that into your professional life now as a medical oncologist? Dr. Matthew Farrell: Yeah, I studied writing and was interested in writing before I transitioned to medicine. So, I minored in creative writing in college, and then I went to graduate school to get a Master of Fine Arts in creative writing and fiction writing. And it was partially that process that eventually led me into medicine. I realized that a lot of what I was writing about actually had to do with medicine. And as I was rereading some of my own work, I was drawn to stories of illness and family and recovery and processing grief, and I decided that those stories were really compelling to me and decided to transition to medicine. It was also helpful that my wife - girlfriend at the time - was applying to med school, so I had that idea in my head, and she was inspiring to me. So, I transitioned to medicine.I love to keep writing. I still love writing, and a lot of what drew me into oncology specifically is the brilliant, captivating, moving stories of interacting with people. And so it's one of my outlets and things I do for fun, as well as a way of helping me process what I see. Dr. Lidia Schapira: Before we talk about this story, let's talk a little bit about your ideas of the language that we use, because I know you've written about that as well. So, as a writer and as a person who loves to reflect and find story, tell us a little bit about how you negotiate the words you use and the language you hear your colleagues and your peers using with patients. Dr. Matthew Farrell: Coming from a writing background, where in workshop, we would go through our own stories, my writing professors would go through each word with a fine-toothed comb and sometimes in very elaborately, critical ways would say that this is a terrible word, this destroys the whole sentence, the whole story. And it just had me paying attention to the written language as well as the spoken language. And one of my creative writing mentors, my thesis advisor Ahud, he had leukemia and eventually died of leukemia, and he talked a lot about the experience of having cancer and the way that cancer is often talked about in this kind of heroic way in which the treatments are weapons and cancer is waged on a battlefield and people with cancer are heroes of that and how that can be very empowering in certain circumstances and also very draining in others. Dr. Lidia Schapira: Those are such fine points, and it's obvious that you're very careful about the language that you use in your writing. So, let's talk a little bit about this piece that we've just published in JCO that is a little different than most of the pieces because it describes scenes. Tell us about how you put these scenes together, what it meant to you, and what the overarching message is for your readers. Dr. Matthew Farrell: Yeah, I think I'm used to writing scenes. I'm used to writing both fiction and nonfiction stories like this, and when I was approaching this, I just wanted to try to capture the experiences as I had understood them. And I also talked a lot with my family about them to try to remember what it was like and how our thoughts have changed on it over time. And so I tried to capture who John was and my memories of him as best as I could. I think that the best way to get across people's personalities, their vibrancy, is by writing scenes about them, because I can never describe someone as well as they can illustrate themselves through their own actions and dialogue. Dr. Lidia Schapira: So John was this figure that you had admired as a child and was so interesting, and then you bring us to a very debilitated John and some scenes in his apartment. Tell us a little bit about the time, the context, and the illness. Dr. Matthew Farrell: Sure. This was the mid-1990s, and there were a lot of changes going on in the care of HIV and AIDS, a lot of rapid changes in our understanding of the illness as well as the treatments available for it. And it was really hard and devastating that John was able to see a lot of promising treatments on the horizon, but they weren't readily available to him when he... /episode/index/show/aoopodcast/id/26225076

I Want to Kill you: Facing a Threat and Finding Support and Safety 03/14/2023

I Want to Kill you: Facing a Threat and Finding Support and Safety Listen to ASCO’s Journal of Clinical Oncology essay, “I Want to Kill You” by Dr. Noelle LoConte, Associate Professor of Medicine at the University of Wisconsin School of Medicine and Public Health. The essay is followed by an interview with LoConte and host Dr. Lidia Schapira. LoConte shares her experience of a patient's threat to kill her and her reflections on how health care can be improved. TRANSCRIPT Narrator: I Want to Kill You, by Noelle K. LoConte, MD () My patient threatened to kill me. I was in the middle of a busy medical oncology clinic. I was seeing her to discuss test results 1 week after I told her I was concerned that her cancer had returned. As I suspected, the test confirmed recurrent cancer, and this time, it was incurable. I walked into the room to share this news with a woman who I had been seeing for about 3 years. I had been her oncologist since she was first diagnosed with stage III cancer and saw her through surgery and adjuvant chemotherapy. I had met her children, knew the names of her pets, and had discussed my children and pets with her. We were on very friendly terms, and I enjoyed seeing her name on my clinic schedule, certain that beyond discussion of her cancer and test results, we would also get into some interesting conversations about life, the weather, or college sports. Truly, it was a delight to be her oncologist. She had no known mental illness, no brain metastases, and had never been angry or violent with me. I used the SPIKES protocol to review why we were there and deliver the test results.1 I had done this many times before, and there was nothing that stood out to me in the moment about her or this clinical situation to make me think that I was in danger—a fact that made what happened next even more shocking. When I paused to see what questions or thoughts she had, she said, “I want to kill you. I want to blow your face off. You should never have become a doctor.” I intellectually understood that she was upset about the news of her cancer recurrence and had understandable anger at the dramatic impact this turn of events would have on her future. I understood that, in her mind, someone had to be blamed, and, mostly out of convenience, it was going to be me. I have since wondered if her lack of close friends and family may have amplified her reaction, in that she had few outlets available to her to discuss her fears and concerns. I have wondered if she felt let down by me after our years of cordial and friendly visits. It was a real-life example of kill the messenger. She continued telling me that she could find my home address. At that moment, I scanned the room and recognized that I could be in real danger. I stood in the corner of the room. To get out, I would have to walk around the desk and between her and the examination table. I also realized that because it was a holiday, there were very few people around who might hear me yell for help. We did not have a panic button or hospital security on speed dial, and it would have taken them many minutes to get to me if I had used the phone in the examination room to call security. I looked down and saw that she had two large bags with her. Patients often bring bags such as these to their chemotherapy appointments, bags filled with things to pass the time such as iPads, books, knitting, board games, blankets, snacks, and water bottles. Suddenly, I realized that she was not scheduled to get chemotherapy that day, so why did she have these bags? I was sure I was about to be killed. I was certain she had a gun in those bags. I said anything I could think of to de-escalate the situation and get out of the room. I promised her a new oncologist, told her I would become a better doctor, and suggested that maybe the biopsy results were wrong (although I knew they were not). As she continued her tirade, I carefully walked past her to get out of the room, and although she never moved toward me, she continued to yell about what a terrible person I am. Once I was back in the workroom, a nurse escorted the patient out of the clinic. We called hospital security and were told they felt their services were not needed as the patient had left the clinic. Despite this horrific encounter, I managed to make it through the rest of the clinic day in a daze. After the clinic was finished, I emailed my supervisor since it was a holiday and other employees were not in the hospital for me to call. In this email, I conveyed my fear and concern about this encounter while making it clear that I was still worried about my safety and the ability of the patient to continue to harm me. The response I received was generic: We will look into it. The very next day while I was at home, I received an alert that there was an active shooter in the area and realized with dread that it was on my block. It was not my patient, but her words about finding my home address haunted me. I hid on the floor after closing the blinds and locking all the windows and doors. My children were with me. For days, I did not sleep more than 1 or 2 hours. I was on constant high alert. Three days later, I was seeing a different patient in the clinic and had what I now realize was a panic attack. I was barely able to complete the visit. The patient was kind and understanding, but I felt inadequate and knew that my patients deserved better. Importantly, I also knew that I deserved better. I reached out again to my immediate leadership team and said plainly that I was struggling and needed help. I was offered statements of support but no concrete actions. While crying in my office, I searched our hospital’s website for possible sources of help. I was lucky enough to come across our Employee Assistance Program and eventually got connected to a therapist. I will never forget the kindness and help she provided. She (correctly) told me that I had suffered an intense trauma and walked me through the next steps, which included meditation, hydration and nutrition, and intense aerobic exercise. She explained that the aerobic exercise (telling me to run as hard as you can with a goal for high heart rate and lots of sweating) can help the brain to heal from trauma and will prevent or diminish the development of posttraumatic stress disorder. I resisted my urge to search on PubMed to ascertain if these were evidence-based solutions and decided to try whatever she suggested. She also helped me accept a 2-week leave from work and find a therapist who specialized in trauma for health care workers. I continued to see a trauma therapist for a year until I felt I had adequately recovered. Eventually, as is true with most traumas, time itself was the best healer. A few weeks later, when hospital leadership learned of my experience, things started to happen. Security did a walkthrough of the clinic space. Patient relations notified the patient that this type of behavior would not be tolerated. There was a backup plan put into place in the event the patient needed care when I was the only oncologist available (eg, on the in-patient unit). It was not all forward progress, however. I was told no changes needed to be made to the clinic and that we could not keep examination room doors open because of privacy concerns. The provider desk would continue to be in the corner of the room, and the patient would continue to sit between the provider and the door. This was understandable given the cost to reconfigure rooms and the unfortunate reality with firearms that even being close to a door may not matter. I asked for panic buttons to be installed—I knew these existed in other clinics—but was told this could not happen. When I asked to be scheduled in rooms where my desk could be next to the door, I was offered a single conference room with no examination table and no medical supplies. I usually work out of three rooms on clinic days, so this would not work. I figured this was as good as it would get and elected to move on and suck it up. Fast forward to 2 weeks ago, when I learned that as much as I hoped these traumatic patient interactions would leave health care workers, they never truly do. I was the oncologist for the in-patient unit at our hospital, which is a liminal space of end-stage disease, anxious patients and families, and difficult decisions. The stakes and severity of the patients’ situations are high. One patient and her family were furious at their medical situation of rapidly progressive cancer, as well as the hospital parking and layout, the plan of care, and even the cafeteria options. I was the recipient of all their frustration. As the patient and her family yelled at me for being inept and stupid and not serving their needs, I had the distinct sensation that my spirit was floating away from my body. I was rising toward the ceiling, watching it all play out in front of me, seeing myself from a bird’s eye view. I thought, “Wow, I am dissociating.” It was a surprisingly effective tool to Protect me at that moment and one that I now recognize as a normal response to trauma. Once the patient and family got all their anger out and told me to leave the room, I became unsteady and had to hold the banister to stay grounded. To drive home how vulnerable we all are in facing these kinds of threats, I reflected on the job of an oncologist. I give bad news on a regular basis, I control opiate prescriptions, and many of my patients feel their pain is not well controlled, a phenomenon seen across many oncology patients.2 If we think physicians are only murdered in the emergency room or on the psychiatry unit, we are fooling ourselves. Recent changes to concealed carry laws and increasing levels of medical mistrust and anger directed at health care workers in the wake of the COVID-19 pandemic likely will increase all providers’ risk of gun violence. With reflection, I now understand that my experience then was made worse by the lack of informed response by leadership to mitigate my trauma and the lack of efforts to improve safety. We deserve leaders and hospital staff who know immediately what to do when a physician is threatened, including reassigning the patient to a new provider immediately, having hospital administration or patient care services review with the patient the zero tolerance policy to provider threats, and allowing a prompt leave from work to address the trauma response, which is best done immediately after the event not months later or only on request. We deserve urgent access to therapists and peer support who understand how to process and overcome trauma. Institutions should track threats to providers in real time and make rapid changes to improve safety. As individuals facing a traumatic patient encounter, we cannot afford to wait for the system to catch up to our needs. We can seek our own counseling and professional support while also providing critical support for our peers.3-5 I thought I was the weak one for not being able (even still) to let this death threat be in the past. I realize now that I am brave and strong for asking for help. We deserve safe environments and clinical practices to allow us to do the difficult work of being an oncologist without worrying about our personal safety. Together we can create clinics, hospitals, and teams that prioritize provider safety and proactively work to mitigate the trauma of patients and families who threaten their physicians and providers. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Noelle LoConte, associate professor of Medicine at the University of Wisconsin School of Medicine and Public Health. In this episode, we will be discussing her Art of Oncology article ‘I Want to Kill You’. Our guest disclosures will be linked in the transcript. Noelle, welcome to our podcast. Thank you for joining us. Dr. Noelle LoConte: You're welcome. Thanks for having me. Dr. Lidia Schapira: It's our pleasure. Dr. Lidia Schapira: I like to start the conversation by asking authors what it is that they're reading or what book they would recommend to a friend. Dr. Noelle LoConte: Oh, that's a good one. I'm reading a book called Hell of a Book right now. Highly, highly recommend it. It's phenomenal. And a book that I would recommend that I recently read - well, Pachinko is a book that I read last year, but I just can't stop thinking about it. So I think that would be my recommendation. Dr. Lidia Schapira: So good fiction is a wonderful way of releasing stress after a hard day at work. Dr. Noelle LoConte: Truly. Dr. Lidia Schapira: Can you talk a little bit about what made you write this particular piece? Are you somebody who likes to write to process experiences, or was this a particular message that you needed to convey? Dr. Noelle LoConte: Yeah, I used to journal quite regularly, but gave that up when I started residency and haven't really picked it back up. But this story kind of wrote itself for me. I felt compelled. I could not stop thinking about it, and eventually, I had to do it. Dr. Lidia Schapira: Reading it is very impactful. And you start with this amazing line, "My patient threatened to kill me." So you're telling us immediately what happened. And the story is quite awful, and I don't know if I should ask you to tell us a little bit about it, but just for the sake of bringing the listeners into the story, can you very quickly recap what happened and how that made you feel? Dr. Noelle LoConte: Yeah, the quick version is I had a long-standing patient in Oncology who I had an established relationship with, who had no red flags for me, who was getting the news of a recurrence, and in response to that news, gave me what I thought was a credible threat to kill me. And the story is about sort of what happened after that, the ripple effect even years later, and how the response of my boss, my health system, my colleagues maybe amplified or made it worse. And then what really compelled me to write this story was when there was a physician that was murdered by a patient, I think not an oncologist, but I just felt the circle sort of tightening in that eventually we're all going to have to think about this. And so that's really what pushed me to write it. Dr. Lidia Schapira: Yes, and we're grateful for you bringing it to our attention. Let's just start by reflecting on this relationship you had with a patient. You opened the essay by saying that you seemed to trust each other, that you were delighted to see her name on the schedule, that she knew about you, that you had shared freely about your life. And then this threat comes out of nowhere. You didn't anticipate it, and it also comes at a time when there were very few people around because it's a holiday. So tell us a little bit about how you felt in that moment. You basically wanted to make a quick exit from the room, and that comes across, but can you tell us a little bit about what the feelings were that you experienced at the time? Dr. Noelle LoConte: Immediately, I felt terrified because whether she intended to or not, I believed her that she had a firearm and was going to kill me. The story goes into why I felt that way, but suffice to say; I couldn't sort of intellectualize my way out of this one. I really, deep in my heart, felt panicked. I think after the fact after I got out of the room and got through that day of clinic, I felt ashamed. I think that was probably the emotion I felt, that I fell for it, so to speak, that I didn't just trust that everything was going to be fine. Dr. Lidia Schapira: Can we talk a little bit more about that shame? I think that is such an important feeling that many physicians share an experience at some point and often doesn't get talked about. How long did it take you to understand that it was perhaps some shame that you were also feeling and perhaps that that was also isolating and compounding the trauma? Dr. Noelle LoConte: I would say I felt ashamed because I got back to the workroom, and I had to ask for help. I'm of a generation of physician before work hour restrictions and caps and so forth, where I worked many a day, totally sick. I don't think I had ever called in sick to that point. I'm not saying that to say that's the right approach. I, in fact, do not think that's the right approach, but that's the type of physician that I am and how I grew up. I'm also from the upper Midwest, where work ethic really is like the most important personal characteristic, so I take my work pretty seriously. So I felt I had let myself down, I'd let my team down, I had let my patients down, that if I had been a “better physician,” that this wouldn't have gotten to me the way it did. So I would say I felt shame almost immediately. It's been the letting go of the shame that has taken a lot longer. Dr. Lidia Schapira: Talk to us a little bit about the process of letting go of the shame. You mentioned very specifically some activities that helped, finding a therapist that helped, taking time away from work that helped. But walk us through that process. Dr. Noelle LoConte: Yeah, and I think part of the story, too, is that I kind of bumbled into this, and it would have been better for people above me or supporting me to be like, “You need to do X-Y-Z.” And ultimately, it was when I landed with Primary Care that they were like, “Oh yeah, we get threatened all the time. Here's how we do it.” But yeah, what I did was I used employee assistance program, and then they connected me with a trained therapist who worked with providers that have been threatened - so unfortunately, a growing population for her - and I just in that moment decided to set aside my need to kind of be evidence-based and intellectualize my way out of everything, and I said I am just going to trust that whatever they tell me is sound, and no matter how ‘woo’ it sounds to me, I'm just going to do it. Because, at the time, I wasn't sleeping at all. At this point, it had been days, I think since I had slept. And she talked about hydration, nutrition, exercising to really get your heart pumping, get really sweaty, having a safety plan, not being alone. And so I just really just said, ‘I'm just going to do it.’. And then, ultimately, it's really time away from the incident. I mean, it still has not left me, but it is much better. Dr. Lidia Schapira: Can you share with us a little bit how this impacted your life away from work, at home, how it impacted your relationship with your kids, with your peers, and with people you interact with outside of medicine? Dr. Noelle LoConte: Yeah, I mean, the most immediate thing was that, unfortunately, there was an active shooter alert that happened shortly after my incident. And I was at home with my kids, and in the moment, I thought I was going to die, and I thought my kids were going to be left without a mother. So, my kids, I wanted to keep them safe from harm, and so I had real moments of thinking like, I should leave my job. It's not worth it. As far as my husband, he's also a physician, and so he implicitly understood. Dr. Lidia Schapira: I'm glad you had the support that you needed. But you talk a little bit about the lasting trauma, and in the article, you mentioned that what led you to write about this was that there was a trigger that occurred. Can you share a little bit about that? And not only what the triggering incident was, but how do you continue to deal with sort of this ripple effect of what happened now several years... /episode/index/show/aoopodcast/id/26224995

Cancer Stories: The Art of Oncology

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