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.

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

Mrs. Hattie Jones: The Patient I Can't Forget 02/28/2023

Mrs. Hattie Jones: The Patient I Can't Forget Listen to ASCO’s Journal of Clinical Oncology essay, “Mrs. Hattie Jones” by Dr. Eric Klein, fellow at Stanford's Distinguished Careers Institute. The essay is followed by an interview with Klein and host Dr. Lidia Schapira. Klein shares the mystery of why Mrs. Hattie Jones might have died when she did. TRANSCRIPT Narrator: Mrs. Hattie Jones, by Eric Klein, MD () That Hattie Jones died was not unexpected, but why she died when she did has been a mystery for more than 40 years. It was late summer and she’d been hospitalized for several weeks when I met her, as it were. In the era before a palliative care subspecialty was established, patients with incurable cancer like Mrs Jones were admitted for inevitably long hospital stays characterized by slow declines in form and function, managed by trainees like me, the least experienced and least expert on the team. The chief resident on the service, burly and gruff, brought us into her private room early on the first day of my rotation on the colorectal surgery service. Mrs Jones appeared malnourished and frail, with one intravenous (IV) bottle hanging and concentrated urine collecting in a bag at the bedside. She did not, in fact could not, acknowledge our presence or answer our queries as to her well-being or needs because of an induced somnolence by the morphine running continuously in the IV. She breathed regularly but slowly and did not seem to be in distress. The goal in caring for her, we were told, was simply to keep her comfortable until she died. She was the first terminally ill patient I’d cared for, and her isolation and unresponsiveness filled me with sadness and unease. Alone on afternoon rounds later that day, I was surprised to find someone sitting beside her bed holding her hand. The visitor was a sturdy woman a few years younger than Mrs Jones, dressed neatly and respectfully as though she were in church. She looked at me and said, “I’m Hattie’s sister, and I’m here to be with her when she dies.” Her demeanor conveyed a sense of duty both to her sister and herself, and her solemnity evoked a divine presence. I introduced myself and answered her many questions about her sister’s condition. “Was she in pain?” It did not seem so, I replied. “Would she ever wake up?” I explained we could wake her up by turning down the morphine but that she would likely be in pain if we did. She considered that silently for a few moments and said she did not want that, although she longed to hear her sister’s voice again. “Was she getting enough nutrition?” The IV also contained sugar water with enough calories for her condition, I explained. She said she missed her sister’s smile. “How long is she going to live?” I admitted that even experienced physicians could not predict that. She was silent after that and after a few minutes I excused myself to tend to other patients. The days turned into weeks, then months, as the daylight hours grew shorter and the weather cooler and the fall slowly turned into winter without much change in Mrs Jones’ condition. I’d greet her on rounds each morning, never eliciting a response, briefly examine her, write new IV orders, and move onto the day’s work—rounding on patients being prepped for or recovering from surgery, then outpatient clinic, the operating room, and new patient admissions. Each afternoon Mrs Jones’ sister was there by her side for several hours, watching her intently, holding her hand, and sighing sadly. Each day she reminded the team “I just want to be with her,” she said, “so she will not be alone when she passes.” Days on call for me were generally stressful and lonely, testing my medical knowledge and incompletely developed sense of empathy. As interns and newlyweds, my wife and I had call schedules that did not match—she every third night and me every fourth, such that we only had one evening a week together that first year when neither of us was exhausted. I missed our days in medical school when we shared classes, had dinner together every night, and walked afterward to the local Baskin- Robbins; now we work in different institutions, with different hours, and rarely had enough energy in the evenings and on weekends to truly be present for the other. I drew the short straw on my team in late December and was on call on Christmas Day. Because the operating room and clinics were closed, I made rounds later than usual and Mrs Jones’ sister was already at her bedside when I entered her room. She told me she came early because she was hosting her large family for an early afternoon Christmas dinner, a long family tradition. Over the months of Mrs Jones’ hospitalization, we’d developed a sense of each other, she trusting an inexperienced, young, and tired doctor trying to keep her sister comfortable, me seeing a devout woman dedicated to her sister’s soul. She asked, “Is it safe for me to leave Hattie alone for a few hours this afternoon so I can have Christmas dinner with my family?” and added that it would be the first without her sister’s presence in many years. I replied assuredly that it was, that her sister’s condition had been stable for many months and that I thought she was going to live for a least a few more weeks. She looked at her sister, then at me, gathered her coat and scarf, kissed Hattie goodbye, and headed home. The rest of the day was relatively quiet for a day on call but typical for a holiday. There were a few patient phone calls, one or two patients to be seen in the emergency room, and no emergency surgeries. The hospital provided a free meal of turkey and sides to all the staff that were on call, and those of us in the cafeteria shared a sense of holiday cheer, albeit muted by being away from our own families. Despite the happy spirit there, I was lonely, missing my wife, and sad to have to postpone my own Christmas Day birthday celebration. While thinking about that I got what I thought was a routine call from the colorectal surgery nursing unit—perhaps about a patient needing a medication reorder, or a need to restart an IV, or to talk with a family about a hospitalized relative. Instead, the nurse on the phone summoned me to the unit to pronounce Mrs Jones dead. I paused for a long moment before asking, dreading the response: Was Mrs Jones’ sister back from Christmas dinner? “No”, came the answer. My tears flowed copiously and quickly; my heart hit the floor. I sobbed loudly for a few minutes, unable to explain to my colleagues what had transpired. The walk from the cafeteria to the nursing unit seemed much longer than usual. I examined Mrs Jones for the final time and confirmed her lack of heartbeat and breathing. I watched as the nursing staff disconnected the IV, a lifeline that was no longer needed. I sat at the nursing station and filled out the death certificate. Name: Hattie Jones. Age: 63. Date and Time of Death: 1:23 pm, December 25, 1981. Cause of death: Cardiopulmonary arrest secondary to metastatic colon cancer. I put down my pen and summoned the courage needed for my last task—telephoning Mrs Jones’ sister to share the news. I do not recall what I said, but I have a vivid memory of the reaction—she was initially silent and then I heard her cry, others in the background joining in when she repeated the news; I remain unsure to this day which one of us was more despondent. Over the course of my career, I’ve pondered many times over the timing of Mrs Jones’ death. Perhaps she wanted her sister to be surrounded by family when hearing the news so that the burden of her sister’s grief would be lessened by sharing. Perhaps it was meant to serve as a poignant reminder about the need for and power of celebrating time with family. Perhaps it was for me to experience a sense of helplessness to deepen my empathy for those who were incurable. Perhaps it was all these reasons or perhaps none of them. No matter the reason, after a career caring for thousands of patients, seeing many suffer and die along the way, I have never experienced a sadder moment. Why Mrs Hattie Jones died when she did is an enduring mystery, but her memory, the profundity of the bond between these two sisters, and the empathy I learned from them have lived on and helped me navigate the emotional ups and downs intrinsic to the practice of oncology. 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, associate editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Eric Klein, a fellow at Stanford's Distinguished Careers Institute and Emeritus Professor and Chair of the Glickman Urological and Kidney Institute at Cleveland Clinic. In this episode, we will be discussing his Art of Oncology article, ‘Mrs. Hattie Jones’. Our guest's disclosures will be linked in the transcript. Eric, welcome to our podcast and thank you for joining us. Dr. Eric Klein: Thanks for having me. It's great to be here. Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing narratives. When do you write, and what kind of scenario triggers your desire to write? Dr. Eric Klein: I haven't written anything creative like this since college, so I don't really have a process. But I can tell you the process I used for this particular piece. I had the real pleasure of being in John Evans' class. He's a faculty member at Stanford in the English department who taught memoir writing. And so the class was to teach us how to write memoirs, and it was filled with prompts, which was a wonderful way to respond, and it tapped into some creativity that I didn't know I had. So the prompt for this particular piece was to write about a secret or a mystery. And I thought about it for a day or two, and I thought, I have lots of secrets in my life, but I don't really want to share them with anyone. And I struggled with it. So I was having dinner with one of my classmates, Thanya, and just discussing this because she had taken the class, and she said, "Well, why don't you make it a mystery?" And it clicked immediately, as I have written, is that this mystery about why Mrs. Jones died when she did has stuck with me for more than 40 years. So that night, I was lying in bed trying to figure out how I was going to write this because I'm not a creative writer--tossing and turning. And about 1:30, I got out of bed, and I sat in our dark living room, and I tapped the story out on my iPhone, and I emailed it to myself, and I edited it the next day. And that was the process. Dr. Lidia Schapira: Your essay has this very factual title, including the Missus, ‘Mrs. Hattie Jones’. And then it starts with this statement, "She died.” We know this, but her death is not unexpected. But the timing was. And that mystery has stayed with you for 40 years. It's a very impactful opening. I thought that was very creative, actually, on your part. Beautifully done. Tell us a little bit about why you have pondered for 40 years about the timing of Mrs. Jones' death. Dr. Eric Klein: It was a very emotional event for me, in part because I was so young in my career. I had never taken care of terminally ill patients before. Nothing in medical school prepared me for that. There was no palliative medicine service at the time. And I think, as many social scientists have observed, is that things that happen to us when we're young, like our first love, always stick with us more firmly and more deeply than things that come later in life. So that's why it was so emotional for me, and I think that's why it stuck with me for so long. I didn't know how to deal with it at the time. Dr. Lidia Schapira: Did you ever have a conversation with Mrs. Hattie Jones? Dr. Eric Klein: Well, I tried. I certainly spoke with her sister a great deal, but Mrs. Jones was unresponsive, and that was by design. The morphine in the drip, and the IV drip was meant to keep her comfortable. I mean, we have learned a lot about palliative care in the intervening decades, so we don't do that anymore. But that was the standard of care then. Someone was in pain, and so you gave them enough narcotic medication to keep them out of pain, and whatever else happened downstream didn't matter. I'd say one of the other powerful things about this and sort of the key event of learning that her sister was not at her side when she died was that the whole goal of care was all focused on making that happen and facilitating things for her sister and keeping her up to date. And the nursing team was on board with that and so forth. I felt like it was a big team letdown that we let this woman down and we let her sister down. Dr. Lidia Schapira: Let's talk a little bit about you at that very tender phase of your development. You're a young intern, and you've let your patient and the team down. How did you deal with that? And how have you since processed how you dealt with that? Dr. Eric Klein: This was the saddest thing that's ever happened to me. It was the saddest thing at the time. And I think in reflecting upon my career, seeing many sad things, this still resonates with me as the saddest thing ever because of the deep personal disappointment that went along. I don't have clear recollection of how I dealt with it at the time. Probably I just was sad for a few days and moved on. I mean, being a surgical intern in 1981 was very busy. We didn't have a lot of the ancillary services that we have now. The surgical service was busy, and so we moved on day to day. This memory just popped up to me every now and then in quiet times and in discussions, in group discussions with colleagues about challenges that we faced in our career, and sometimes in talking to young people about careers in medicine and what you might experience and so forth. And so I guess I dealt with it intermittently through the years and ended up scratching my head. And finally, this was a cathartic experience for me to be in memoir writing, to be able to put this down on paper and, I hope, deal with it finally. Dr. Lidia Schapira: You make a very powerful case for storytelling as part of a practice of dealing with situations that are so emotionally complex. Forty years later, what advice would you give a young intern who is also facing a moment of extreme personal sadness and grief, and disappointment? Dr. Eric Klein: Yeah, my advice would be don't be stoic about it. That was certainly the expectation in the era that I trained. It was certainly the expectation for men. There weren't many women surgeons then, but that was certainly the expectation for men. People died—surgical mistakes happen—and we were just told it's part of the game. And I recall my chief of service telling me it puts hair on your chest. It sort of makes you a man, and so you just deal with it. So there are so many resources that are available now and a very, very different attitude about the personal part of being a physician and dealing with disappointment and other struggles and the learning curve and all of that. So I would say to youngsters, seek out help—seek out your colleagues who might have been through it. Seek out more senior people and seek out non-physician support people who are generally available at most medical centers and medical schools to help people deal with this, talk about it, and come to terms with it sooner than 40 years. Dr. Lidia Schapira: I'm curious to know if you enjoy reading narratives written by other physicians that describe similar experiences of grief and loss. Dr. Eric Klein: I always have. So the Art of Oncology, A Piece of My Mind in JAMA, and I edit a journal called Urology, and we have a section on narrative medicine. And I think that enriches the experience for the entire medical community and helps keep us focused on our real goal, which is caring for patients. And I think that's increasingly hard in the reimbursement-driven productivity era that we live in now. And that's why I think it's important to do that. Dr. Lidia Schapira: How much have you shared about this creative, reflective side of yourself with your trainees over the years? Dr. Eric Klein: I hope it came through. I can't say that I know for sure that it did. I guess I was known during my career as a storyteller, and I would often share anecdotes usually related to more clinical which is facing this clinical problem and how do you deal with it surgically, how do you deal with it medically, that sort of thing. And maybe less about specific patients. So it's probably better to ask my trainees if I did a good job with that. Dr. Lidia Schapira: Let's go back to this idea that storytelling is very powerful to help us in communicating with each other and processing experiences. Do you use storytelling, or have you used storytelling with your patients in the clinic? Dr. Eric Klein: Yes, frequently. My career was mostly focused on prostate cancer, and so when I saw a new patient with prostate cancer, even if it was the most indolent kind, the very first question on their mind always is, "Am I going to die from my cancer?" And I would say I've seen lots of patients, and I'll tell you what the extremes are. I saw one patient with lymph node-positive cancer who's still alive 25 years after his initial treatment and living a normal life. And I saw one patient with really advanced cancer who died after 18 months. And I would say to them, "Your experience is going to be someplace in between those two stories." Or there might be a more specific situation of someone facing a particular treatment or surgery and they're concerned about that, and I would even hook them up with other patients who have been through it so that they could experience the story from the horse's mouth, so to speak. I think it's an important part of managing patients, I do. Dr. Lidia Schapira: So let's talk a little bit about the language and the plot in those stories. What kind of metaphors do you use, if any? Dr. Eric Klein: Well, I had one patient tell me that I spoiled his taste for oranges because when I described the prostate, I described it like an orange with a rind or a capsule on the outside, and the cancers in the fruit in the middle. So that was one that didn't resonate ultimately. Then I switched to lemons since no one seems to like lemons and so forth. I would say the stories generally had a good outcome. Patients want their physicians to be optimistic, and certainly, patients facing cancer want their physicians to be optimistic. And I'm sure I had a lot of other specific stories to tell about specific patient experiences that don't come to mind readily now. Dr. Lidia Schapira: What book have you read recently that you've enjoyed and would recommend to others? Dr. Eric Klein: I would say Evil Geniuses, which is not a medical story at all. It's a story about the conservative political movement and the Federalist Society, and big business that set an agenda back in the Reagan era to take all the negativity around capitalism and conservatism out and to relax restrictions on business. And to fill the Judiciary with conservative judges and so forth, and how they have succeeded over the course of those decades to where we are now. I have to say I don't read much fiction. I honestly, I don't find fiction does much for me. I read mostly nonfiction. Dr. Lidia Schapira: You come across as somebody who is very self-aware, and I assume it's taken a long time to be able to say things about your feelings and recognize the impact some of these patient experiences have had on you. And in the essay, you also mentioned that your wife is a physician and that you spent a lot of time together in medical school, but... /episode/index/show/aoopodcast/id/25891881

Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports 02/14/2023

Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports Listen to ASCO’s Journal of Clinical Oncology essay, “Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports” by Dr. Victoria Wytiaz. The essay is followed by an interview with Wytiaz and host Dr. Lidia Schapira. Wytiaz shares how a shared passion for sports can foster improved physician-patient relationships and empathetic care. TRANSCRIPT Narrator: Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports, by Victoria Wytiaz (). As the holiday season approaches, my parents will still ask me to give them a list of potential gift ideas, despite the fact that I am a 32-year-old oncology fellow at the University of Michigan. Last year, that list contained a simple request for a new lanyard … specifically, a black and gold Pittsburgh Steelers lanyard to transition to upon the conclusion of the Pittsburgh Penguins hockey season and the start of football training camps. All hospital employees must visibly display their ID badges to gain access to the facilities, and as such, a lanyard is essential. For me, it was also essential for my lanyard to serve the additional purposes of representing my passion for my hometown sports teams and sparking joy and conversation with my patients. Since starting college, becoming a physician was my focused goal. I felt that a career in medicine would provide me with the best opportunity to use my natural scientific curiosity and ability to connect with people to do the most good. I never truly wavered in that career goal; I had seen the dedication and compassion of the oncologists who cared for beloved family members with cancer and felt a connection with their life’s work. However, if prompted with the cocktail party question, “What would you do if you were not in medicine?,” I would be able to answer without hesitation, “I’d be a sports journalist or sideline reporter.” As a child growing up in Pittsburgh, sporting events were family outings, background television, and oftentimes, tone-setters for the mood of the city. Early on, I learned the basic rules for the family favorites of baseball, football, and hockey. As I grew older, I sought to understand then nuances of each sport and, in doing so, found a greater depth of appreciation for them. For me, sports represented the ability of individuals to work ceaselessly toward a common goal while facing and overcoming adversity. I found myself drawn to the human side of sports, taking an interest in the origin stories of athletes and trying to grasp the depth of their mental and physical fortitude. To that end, I joined the staff of my college’s daily, student-run newspaper, writing articles and feature stories for the sports section. On game days, I would wrap up class and head out to the field or court to pick up my press pass, watch the game, attend the press conference, and file my story by midnight. Rather than being fatiguing, I found that my sports journalism pursuits were energizing, and that I was living out two dreams, one in pursuit of a career in medicine and the other as a sports reporter. Each level of medical training presents its own challenges. Medical school has its share, including late nights in the library studying biochemistry and the anxiety that comes with stepping onto the wards for the first time. My combined internal medicine/pediatric residency seemed at times to comprise an endless string of busy inpatient services and critical care rotations that left little time for any other diversions. The transition to hematology/oncology fellowship brought with it increased responsibility and, for me, new psychological stress. The continuity of oncological care and the ability to guide patients through their cancer journey at a time of utmost vulnerability were the primary factors that drew me to the field, but these aspects of care also place oncologists on an emotional rollercoaster of extreme highs and lows. The work can be all-encompassing, and as a trainee with substantial deficits in knowledge and experience, I frequently feel guilt when pursuing passions outside of oncology. I recently experienced this sense of guilt while watching a football game with friends. Around halftime, I started wondering, should I be preparing for next week’s clinic? Am I keeping up with the most recent studies? I also wonder what my patients, both real and imagined, might think if they knew their oncologist was sitting on the couch on Sunday afternoon wearing their lucky jersey. Would this be perceived as laziness, or worse, a lack of dedication to my chosen profession? As so often happens, patients have been perhaps my greatest teachers in combating that guilt. In wearing my lanyards and inviting conversations that step outside of the world of cancer, I have learned to appreciate that just as I have different passions, so to do my patients, and there is often overlap which further strengthens the physician-patient bond. Comments on my professional sports allegiance are often the first words spoken to me by many patients and set a comfortable tone, even if our allegiances differ. The next time I see Mrs B and her husband, I suspect that they will have a Detroit Lions lanyard for me so that I can truly be one of them. A big college football win for Ohio State will certainly put Ethan, my 20-year-old patient with sarcoma from Ohio, in a great mood, and we will spend a few minutes discussing the heroes of the game before reviewing his latest scan or mapping out the next treatment plan. For patients, the drive to discuss something other than their diagnosis or treatment speaks to a deep desire for normalcy at a time and place that is anything but normal. As many patients notice and comment on my lanyard, I have also become more inquisitive about their outside interests which are too often buried or entirely undocumented in their medical chart. While reviewing Mr K’s records before his virtual visit for newly diagnosed testicular cancer, I saw that he drove a Zamboni at a local ice rink, so I began our visit by asking him about the process and if he was a hockey player himself. We traded names of favorite players and our respective teams’ playoff chances. This brief interaction significantly reduced the awkwardness of a first virtual encounter and helped the rest of the visit flow easily. I sensed he was at ease, and I hope he will continue to feel the same as he continues with his treatment. I now have a rotating assortment of lanyards to change with the sports calendar, both collegiate and professional. I love walking into a clinic examination room, seeing a patient notice the lanyard and ask if I saw the game on Sunday or agreed with the controversial call or the potential of the latest draft pick. My sports journalism career was brief but rewarding, especially when I had the opportunity to meet and connect with athletes and coaches. In some small way, I still use sports to forge bonds, now with my patients, to learn a bit about their motivations and ambitions. When I have the time, I will watch a game or read an interesting in-depth feature article because it brings me enjoyment, and I hope that my patients also take the time to focus on the things that provide joy in their lives, whether that be sports, art, music, or other pursuits. Both physicians and patients are complete, complex beings capable of harboring multiple interests that when cultivated, enrich our human experience. Recognizing a shared interest or experience with a patient can present an opportunity for an enhanced physician-patient bond, provided that this is guided by the patient’s needs and pursued on their own terms. When the love of sports in an oncology fellow from Pittsburgh happens to mirror that same love in a patient from Michigan, I feel more engaged in my work and even more capable of pursuing my primary passion of providing attentive, empathic oncological care. 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 professor of Medicine at Stanford University. Today, we're joined by Dr. Victoria Wytiaz, a second-year hematology oncology fellow at the University of Michigan. In this episode, we will be discussing her Art of Oncology article, "Wearing Your Heart Around Your Neck: Fostering Physician-Patient Relationships Through Sports". At the time of this recording, our guest has no disclosures. Victoria, welcome to our podcast and thank you for joining us. Dr. Victoria Wytiaz: Thank you very much for having me. Dr. Lidia Schapira: It is our pleasure. I'd like to start by asking you, as an author, to tell us a little bit about your process for writing and your motivation for publishing. In other words, what inspired you to write and what led you to submit this for publication to share with colleagues? Dr. Victoria Wytiaz: As with a lot of things for us in medicine, it was prompted by our patients. I work a lot with adolescents and young adults and find that interacting with them brings me a lot of joy. Just going through some of my conversations with patients regarding sports and even sharing them with my colleagues and bringing them joy through that. I wondered if that happens for other providers, and that's really what prompted me to want to share the story. The process of writing - I did a lot of writing as an undergrad and that's a piece of my life that I like to do. And when I can combine that with medicine and oncology, another thing that really brings me joy. Dr. Lidia Schapira: You talk about wearing your heart around your neck and that speaks of passion and then you actually use the word passion. You have a passion for sports. Help us understand that a little bit. Where did that come from? Dr. Victoria Wytiaz: I think a lot of it came from how I grew up and my family. Sports brought us together, both as an immediate family and our extended family, whether it was watching games or discussing games, something that we enjoyed doing together. And then it was always an easy way for me to make connections with people at all stages of my life, whether it's in medical training or outside of that. Just an easy, kind of non confrontational way to make connections with people. And then from the passion side of it, I like to see other people have passion for what they're doing. And athletes are incredibly passionate people and you can see that and sense it and you can feed off of that. So it's a natural passion for me to watch them. Dr. Lidia Schapira: Do you play a sport? Dr. Victoria Wytiaz: I do not. I played volleyball in high school and it was fun, but I'm more of a spectator. Dr. Lidia Schapira: So as a spectator, the sports that you write about here are team sports. I wonder if you see some sort of a parallel between the coaches and the players in a team and the teams that provide medical care. Dr. Victoria Wytiaz: I think that's an excellent point and I really do. And you can see it if you're watching a game and you see the coaches interacting with players. And I think the important thing is it's not always the same. The coach relationship with an individual player is different and our relationship with different members of the medical team is different based on individual personalities and roles. So I think the way that changes based on the setting can be seen in both scenarios. And especially in the oncology world, relying on our team members is so critical and everybody has a different role and feeds off of each other in a different way. I agree. That's an excellent parallel. Dr. Lidia Schapira: We use a lot of sports metaphors anyway when we talk to patients with cancer. Tell us a little bit about how you introduce that language in your visits with patients, and if you worry, as I do sometimes, about winning and losing as ways of perhaps presenting the results or outcomes of cancer treatments to patients. Dr. Victoria Wytiaz: We certainly do. Sports metaphors are certainly abundant. I don't love the winning and losing either. It really sets up this dichotomy of failure and success. And you're right, sports is so much wrapped up in the winning and the losing. I think really good athletes and really excellent coaches can take things away from a win or a loss and kind of phrase things differently. And I hope I do that with patients to prevent that sense of failure, both on their part and on our part, too. Dr. Lidia Schapira: How would you describe the magic that sport seems to hold for you? Dr. Victoria Wytiaz: That's a great question. I think that's quite crazy. You think you've seen everything and then you watch a game, you watch something on television, you see it live, which is even better, and you walk away, and it’s like “I can't believe that happened. I really can't believe that happened. I've never seen that before.” Even with my parents or my grandparents, they've watched for 70, 80 years something they've never seen before happen. It really does hold that, like you said, magic, that you don't know what the outcome will be and you don't know how you'll feel based on what occurs. It really is that sense of unknown that kind of brings you back. Dr. Lidia Schapira: And it's the beauty of the way that these super athletes also play their sports. I can just think back just a few weeks ago to the final of the football World Cup. I'm Argentinian so o that was a big moment. But even if you're not attached to the team, that was an amazing moment to watch. Tell us a little bit about this habit of yours of displaying lanyards that identify a particular team as a way of introducing yourself to a patient, because definitely their eyes are going to be drawn to your badge and the lanyard next to it. So tell us a little bit about that, and that's the way you actually introduce your story. Dr. Victoria Wytiaz: When I was in medical school in Philadelphia, I noticed that a lot of providers would wear a lanyard that identified their undergraduate training. And I thought that was a really cool way to kind of know where people are coming from. We were all coming from different places. Giving like, a little sense of your hometown. It's one of the most common questions we ask our colleagues and trainers, where are you from? This was an easy way to do it. And then when I moved to Michigan, I found that there's a lot of interaction between Pittsburgh, where I'm from, and other places in the Midwest. There's a lot of back and forth. And once I started to wear my Steelers lanyard, my football team lanyard, I got a lot of comments on it. Mostly positive. I figured the seasons change in many different ways and sports seasons change too, so I'll keep a running series of lanyards that change with the sports seasons. I noticed other people doing it and I thought it was a good way to just give a nonverbal sense of who I am and a part of me. Dr. Lidia Schapira: Have you had any situations where patients just don't get it? Dr. Victoria Wytiaz: I am lucky to be in a very sports-friendly city in Ann Arbor, Michigan, and in the Detroit area. I've never had anyone not get it. I've certainly had an interaction with patients where family members are in the room and we'll talk a little bit of sports and a significant other, another family member does a bit of an eye roll, “There they go again. This is going to be another five to ten minutes talking about the game.” But no, I think people appreciate something outside of that encounter that represents us, because I want to know what represents them outside of what they're seeing us in the cancer center for. Dr. Lidia Schapira: Yeah, I interpreted it when I read it as a way of humanizing yourself as well. And if I could have a lanyard that displays books, I would definitely do that. And I've often come into a room and just talk to the patient about what they're reading, what I'm reading, and try to create rapport that way. Tell us a little bit about the emotional side of this. I was surprised to read in your essay that you actually felt guilt on a Sunday afternoon when you were watching a football match or baseball game. And I wonder where that comes from. Dr. Victoria Wytiaz: I think a lot of us carry guilt when we're maybe not engaging as much as we think we should and working towards patient care. And I think for me, it's perhaps where I am in training. I think as you're going through training, it didn't have any gaps. You go from undergrad to medical school to residency and fellowship, and it's always, “What do I do to get to the next step?“ It’s hard to take breaks and you just keep going. But as I was watching this particular game, it was a Sunday, I think it kind of middle of the season football game. This is a four-hour game. Is four hours better spent elsewhere for clinic next week. Are there things I should be preparing for? And I think for me, it comes from that sense of the process of training and how arduous it can be and not always used to taking breaks through that. So sometimes it can feel a little odd. Dr. Lidia Schapira: Well, I'm sure your well-being coaches will tell you that it's very important for you to take that time away from work and to refuel or replenish your tank. I found the essay just lovely, very easy to read, and I can identify with your passion and the growth, even as a physician, and using this passion that's out of medicine as a way of building rapport with patients. Can you talk a little bit about how you see that going forward? Dr. Victoria Wytiaz: The way I see it going forward is that I hope, as I have patients, that I have more continuity with that that becomes even easier. And what I hope it fosters is patients bringing up their interests to me on their own. I wear my lanyard, and that's a very visible thing. So it's a very easy conversation starter to kind of speak on a humanistic level between just two people. And then I hope that over time, patients become comfortable doing that as well on their interests. First, I hope that that stays with me as I kind of progress through my career. I hope the patients feel similarly. Dr. Lidia Schapira: What lanyard will be on your list of possible gifts for next Christmas? Dr. Victoria Wytiaz: I have every Pittsburgh team represented. I don't have my undergrad lanyard, which is also the University of Pittsburgh. That would be a good one to have from a sports perspective. From my academic career perspective, that would be the next one. I could go very off the board with, like a niche sport, but I would be nervous if a patient had a really strong passion in that and asked me questions. So I'll stick with the ones that I feel comfortable talking about. Dr. Lidia Schapira: And my final question is this: what is the message you want readers to take from your essay? Dr. Victoria Wytiaz: I want readers and providers to take from it that it's okay for us to have passions outside of our work as physicians. That is certainly a passion for all of us, but it is okay to have those other passions and more often than not, something that we are passionate about or enjoy, our patients will also share in that enjoyment. I hope that they use that as a way to connect with patients on just a basic human level, which I think is so important. Dr. Lidia Schapira: Well, Victoria, thank you so much for your essay and for creating rapport and connection through a love of sports to the readers of Art of Oncology. Until next time. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at podcasts.ASCO.org. The... /episode/index/show/aoopodcast/id/25844154

Cardio-Oncology: When Two Life-Threatening Illnesses Collide 01/24/2023

Cardio-Oncology: When Two Life-Threatening Illnesses Collide Listen to ASCO’s Journal of Clinical Oncology essay, by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. The essay is followed by an interview with Rayson and host Dr. Lidia Schapira. Rayson shares a personal experience working with a patient who has two life-threatening diseases. TRANSCRIPT Narrator: Cardio-Oncology, by Dr. Daniel Rayson () I was asked to see a 64-year-old man in the coronary care unit (CCU) 4 days after he collapsed in his driveway after a seemingly normal day at work. His wife told the paramedics that he had been having episodes of chest pain in the past 2 weeks leading up to his dramatic homecoming and he was diagnosed with a myocardial infarction in the emergency room. An urgent cardiac catheterization revealed critical three-vessel coronary artery disease, and on the basis of his otherwise pristine past medical history, he was recommended to undergo coronary artery bypass surgery. His admission blood work, however, revealed a hemoglobin level of 91, much lower than the last available value of 137 roughly 1 year before. When questioned, he described having difficult bowel movements over a 3- to 4-month period with occasional blood-streaked stool. A computed tomography scan quickly diagnosed his second critical problem, a locally advanced sigmoid colon cancer with multifocal hepatic metastases. I was asked to see him urgently to help adjudicate the appropriateness of proceeding with the cardiac surgery in the face of a second competing life-threatening condition and to help the cardiology team elucidate the goals of care in the context of his oncologic prognosis. I had not been inside a CCU since the depths of my residency days and walked in awkwardly while trying to convince everyone that I belonged amid the ventilators, central lines, and constantly pinging monitors. Shuffling through the nursing station, I passed a bank of video surveillance screens that would not have looked out of place in a high security prison and despite being completely disoriented, I managed to find my patient. As I squeezed into a chair between the IV pole and the movable side table upon which lie the prized possessions of the hospitalized, I took mental note of the photo of his beaming family gazing up at him. I introduced myself and tried not to let the pinging cardiac monitor distract me from the discussion or add to the headache that was already beginning to pound. He seemed to become paler before my eyes as I slowly explained the scan findings to him. His liver was peppered with variably sized metastases, too many to reliably count, I explained in answer to his question. Although there was no biopsy confirmation of his disease, the constellation of clinical symptoms, blood work, and imaging left no room for doubt. “So, what am I in for,” he asked. I carefully explained why all therapies for his cancer would be noncurative in intent and why surgery would be limited to an urgent need to remedy bowel obstruction but would not change his overall prognosis. “Can't they just fix this at the same time they'll be fixing my heart?” he then asked. I circled back to why surgery could not deal with all of his disease and then spent the rest of the discussion talking about chemotherapy and the goals of treatment, which were to help him live as long and as well as he could with his cancer. “Until …?” “Until you die from the cancer,” I responded bluntly. “So let me get this straight … they want me to have surgery on my heart so that I can end up dying from my cancer? Do I have that right doc?” Oncologists are experts in reframing prognosis and expectations in the face of metastatic, incurable disease. It is an important part of our jobs to be able to convince people that the median survival time of 2-3 years for metastatic colon cancer is something to cheer about. It is equally important that we are able to clearly explain that a median is just a point estimate, without direct relevance to the individual in front of us, and that we are often unable to predict how close to and on what side of that median the future holds for them. “I guess that's right,” I replied, my eyes not leaving his. “It's a question of what would get me first,” he stated. I nodded, “In a sense, you know the answer already.” “Yes, I could have died in my driveway, that's true. I guess I just about did.” “As close as anyone can come to just about dying in their driveway, yes, you just about did.” “But if my heart does it, it will be quick, right? No pain. No drama. Just an ending, like almost happened?” I nodded. “But cancer-that's a whole other thing. Pain, vomiting, chemotherapy, weakness. Suffering. For me and my family.” I explained the lengths to which we try and control pain and other symptoms, from both disease and treatment, and reviewed the medical and supportive care that is designed to minimize suffering. “But doc, how often does that happen? How many times can you truly say that you were able to minimize suffering? And not just for your patients, what about the suffering you don't see? For my wife, my kids. How do you take care of their suffering as they spend the next 2-3 years, if I have that long, slowly watching me die of cancer?” By then, my headache was screaming at me. A hammer behind each eye was slamming down on chisels angled to the center of my brain. The incessant pings, beeps, and buzzes of the monitors and machines were laughing at my discomfort. We kept circling back to the competing timelines of two life-threatening illnesses, the dramatically different trajectories they take to death, and the different types of fallout and collateral damage to be expected. After an hour together, he had decided that death later would always be better than death now, and as we warmly shook hands, he turned the family photo toward me as final confirmation of the motivation behind his decision. I spent a few minutes collecting my thoughts and trying to soften the hammer blows to my head with some deep breathing and ibuprofen before venturing to the work room to dictate my consultation note and find the attending cardiologist. “Thanks for seeing Mr L, what do you think?” The chief cardiac surgery resident had found me first. It was not everyday that an oncologist is needed in the CCU. I was not as incognito as I thought. I explained the onco-scenario in detail and could sense the disappointment when I came to estimates of life expectancy. A median survival of 2-3 years after a bypass would be woefully inadequate from the perspective of a cardiac surgeon, whereas, for an oncologist, it represents a realistically optimal outcome with current therapeutic options. If an otherwise healthy patient survived cardiac surgery—an increasingly expected outcome given current technology—they are fixed and unlikely to ever suffer a cardiac death. An otherwise healthy patient with a metastatic cancer, however, is never healthy again. I could never fix Mr. L. I spent some time trying to convince the resident that the value of whatever time is left for any one patient is known only to them. And that the risk-benefit equation that underlies any medical or surgical decision is always assessed from the vulnerable position of the unwell with the ultimate decision usually made on the basis of parameters beyond medical or surgical outcome expectations. I noticed his eyes looking beyond me and knew that he was barely listening to my philosophical explanation as to why I recommended proceeding with the surgery. In the end, Mr L underwent a three-vessel coronary artery bypass graft, which he sailed through without complication. I took care of him for the next 4 years, sequencing both chemotherapy and targeted therapy as his disease waxed and waned in threat until finally there was no stopping it. I got to know his wife of 31 years who along with their three grown children celebrated the arrival of their first grandchild during one of his visits to the chemotherapy unit. I saw photos of family milestones along the path of his cancer journey and laughed with him when he was teased about his chemo-good looks. I wrote letters that he took with him on family trips to give to border control if he was asked about his narcotic medications or to medical personnel if they needed background and guidance if he got sick. He always told me that the letter was more important than his passport, knowing that there would be someone at the end of the line to help him and his family if he got into trouble. A few weeks after he died, I ran into one of my palliative care colleagues who I knew was involved in Mr. L's last weeks. He confirmed that he passed away peacefully and in comfort. His wife and three children were with him, and his favorite music was playing as he became unresponsive. I gave him my thanks for helping with his care and for allowing him to die in peace and turned away to walk back to the clinic. “Oh, one more thing,” he called out. I turned back in mid-stride. He told me to tell you that he was glad he did not die from a broken heart. 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 professor of Medicine at Stanford University. Today we are joined by Dr. Daniel Rayson, clinical oncologist at Queen Elizabeth II Health Sciences Center. In this episode, we will be discussing his Art of Oncology article, Cardio Oncology. At the time of this recording, our guest disclosures will be linked in the transcript. Daniel, welcome to our podcast and thank you for joining us. Dr. Daniel Rayson: Thank you very much for inviting me to be here with you today, Lidia. Dr. Lidia Schapira: It is a pleasure. I'd like to start by asking you some questions about your process for writing. You have written essays before and published them in many venues. What sorts of clinical episodes trigger your desire to write, reflect, and then what leads you to want to share them with readers? Dr. Daniel Rayson: That's a loaded question, but thanks for asking it. So, as far as the clinical scenarios, it's those episodes in routine practice that somehow get under my skin in one way or the other, whether it's due to a strange diagnosis, an unusual reaction or interaction I've had with the patient and/or their family, a challenge in clinical management, an end-of-life experience that's particularly touching or emotional, or increasingly for me, the juxtaposition of different stories amongst a group of people with perhaps somewhat similar diseases. So really very varied. It's interesting because sometimes it's only weeks after the fact I realize that something had affected me, and then I'll make a note in my phone and at some point I'll come back to it and start fleshing out themes that I think are worth exploring. And over time, and it's usually quite a bit of time, a story basically evolves. Dr. Lidia Schapira: You're an amazing storyteller. So let's focus a little on this particular story that you're telling and bring us to the bedside. Dr. Daniel Rayson: Yeah, so this is a story - all my essays are really absolutely true life - and I was called to the CCU for a patient who had just suffered a myocardial infarction and needed a three vessel bypass and at the same time was diagnosed with metastatic colon cancer. And probably the last time I had been in a CCU was maybe 15 years ago, I certainly can’t recall. But, the juxtaposition of this fellow being faced with two life-threatening diseases, one of which would kill him very quickly as he collapsed in his driveway, leading to the CCU admission, and one of which would kill him in years to come, became a juxtaposition, if I can use that term again, that really stuck with me, both in terms of decision making, competing threats to life, the personal motivation of the patient, and trying to discuss the time frames with the cardiologists who have very different perspectives on clinical success by what they do. Dr. Lidia Schapira: I thought it was so interesting that you write that you have this hour-long conversation and more with the patient at bedside, and the patient says to you, ‘So, are you recommending that we fix my broken heart so I can die of cancer?’ And that is just about as direct as it gets. And then you're explaining to the chief resident in cardiology for whom the two to three-month median that you're saying is likely life expectancy for somebody with this diagnosis, it just doesn't seem to be good enough. And there you are sort of juggling time estimates and trying to assign value to time left and time spent without ever having met him before. And then you tell us, and this is the part that I wanted to ask you a little bit about, that you have a splitting headache. How did that moment feel to you? Dr. Daniel Rayson: Well, even walking into the CCU, we get used to our environments, right? I'm sure that you as well, you walk into your cancer center, your home, everybody knows you, you know, everybody knows what everything is. Try walking into the CCU after having not been there for 15 years, and you are like a rat in a maze, completely out of your environment. So I was uncomfortable in the first step into the CCU. It just exponentially increased from there. Once I got to the bedside, face to face and talking in my little zone of oncology, everything seemed to settle. But as the discussion became more complex and all the monitors and all this stuff around this patient, yeah, I had just a pounding headache. And it didn't help talking to the CCU resident, who really had a hard time grasping what I think I was trying to convey. Dr. Lidia Schapira: And so your patient chose to have the surgery, and then he was under your care, you tell us for four years, during which you must have built a very solid therapeutic relationship. So did you and your patient, I wonder, ever go back and discuss what that consultation was like for him? Dr. Daniel Rayson: He was a very jovial kind of fellow with a great sense of humor. So we would come back to it every now and then, but only very glancingly in a way, ‘Remember how I looked then, Doc, before your chemo got me? I looked pretty good in the CCU compared to now, right?’ That was his kind of attitude as we went through. It would come back to him, but not in a negative way at all. The interaction actually ends up being extremely positive, even that day. And we built on that going forward. Dr. Lidia Schapira: And his last words spoken to you through your colleague in palliative care just made me tear up. We often wonder if we did the right thing by our patients, and he basically told you so. Can you tell us what those last words were and how they felt to you? Dr. Daniel Rayson: Yeah. So this is again all true fact, basically running into the palliative care doctor who took care of him just his last days. And I was turning back to go to the clinic after thanking my colleague and he literally called out, ‘Oh, and one more thing. Mr. L told me to tell you that he was really glad he didn't end up dying from a broken heart.’ I still kind of tear up when I think about that. It was kind of the ultimate thanks, really. I mean, he was very grateful all the way through, as was his family. That was probably the ultimate thanks. And that stayed with me for a long, long time. Obviously, still has really. Dr. Lidia Schapira: What I found so artful, if I may use that word, is that you take the reader to this very, very emotional, private moment and then you chose a title that couldn't be less emotional, ‘Cardio Oncology’. And I remember in the review process we asked you about that. So tell us a little about that choice. Dr. Daniel Rayson: I don't know if I can answer that clearly in a way that's satisfying to anybody except to say that Cardio Oncology has become this sub-practice of cardiology. Many centers have Cardio Oncology programs, research, et cetera. As I was writing this, I thought this has to be the title. This is the ultimate Cardio Oncology. This is it. And I stuck with it despite some discussion back and forth. I still think I'm glad we kept the title as it was. Dr. Lidia Schapira: It's so factual, right? And it's distracting because you read the title and you don't expect this essay, which is all about communication, connection, human relationships, and lived experience. Dr. Daniel Rayson: Exactly. And again, I think every subspecialty or little niche in oncology has got to have those basic communication and the whole story at the heart. And I guess maybe that was part why the title. Dr. Lidia Schapira: Yeah. You just mentioned the word communication. I wonder if you can reflect a little on the art of communication and communication skills for those of us working with patients with life-threatening illness and the art of storytelling. Do you see a connection and how do you experience that connection? Dr. Daniel Rayson: Oh, I really do. I think being open to the story is not only meaningful, but is really imperative to optimize communication. Oncology, particularly in the era of precision based medicine and all the high tech things, is very easily led down a very technological pathway. But in the end it's the patient in front of us, or family, like we all know. And the story is what grounds all the connection, all the understanding of preferences, motivations, decision making. And in the end it's what impacts us as people and as clinicians as well as our patients and families. So I see the story as integral in terms of teaching communication skills and taking time to listen, taking time to feel the story and be open to the story unfolding and realizing that, yes, it is a story. Every single case is a story I think is a helpful way to look at, broadly, communication. Dr. Lidia Schapira: There's another thing that I wanted to ask you, and that is, do you have any idea of how long it takes for the full story to emerge? It seems to me that you've been very patient with the stories you tell. You wait until years pass, sometimes until the relationship is complete, until there's a natural end to the story. How long does it take for these stories that you tell so beautifully about clinical practice actually to mature in your mind and then on paper? Dr. Daniel Rayson: That's a great question. And sometimes I'm very jealous of authors who seem to be able to really churn out work that's important to them. I've learned that's not me. In most cases; it takes a year or two beyond my first note and my phone call to come back to it. And I think what I've learned is that giving it time always, for me, maybe just for me, optimizes quality. Rushing, sending it out too early, just doesn't work. Just doesn't work. For some reason, I need to give it the time it takes, and it's a good one to two years on average. Dr. Lidia Schapira: It's interesting to hear you say that. It's taking me about twenty years to write the story that I'm trying to tell. And so it's good to know that there are some of us who seem to need that extra processing time. As somebody who has been so thoughtful about the stories and practices, how do you see the storytelling helping us sort of stay fresh and find joy in practice as, in a way, an antidote to burnout? Dr. Daniel Rayson: Yes, I think that stemming from a bit of an earlier question, is that being open to the story and the heterogeneity of the experiences that we deal with is affirming in humanity and our clinical practice. I think we can all get very tunnel vision and very tunnel focus so that everything starts sounding and feeling the same, which is, I believe, a prelude to sub-clinical burnout. Whereas taking the time to understand and feel the stories, and looking... /episode/index/show/aoopodcast/id/25703382

How Are You, Choi-Seonsaeng?: A Lesson in Cross-Cultural Communication 12/27/2022

How Are You, Choi-Seonsaeng?: A Lesson in Cross-Cultural Communication Listen to ASCO’s Journal of Clinical Oncology essay by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. The essay is followed by an interview with Choi and host Dr. Lidia Schapira. Choi discusses how navigating US healthcare is similar to acclimating to a foreign country. TRANSCRIPT Narrator: How Are You, Choi-Seonsaeng?, by April Choi, MD () It was not until Mr. Yoon’s nurse contacted me (an intern eager to flex her Korean skills) for an “agitated patient who is trying to leave the hospital” that his limited knowledge of English became apparent to everyone. Mr. Yoon was sent down to the radiology department for an additional computed tomography scan earlier that day. He had been admitted for partial bowel obstruction secondary to a colonic mass. After his scan was completed, a technician reportedly told him that he was “good to go.” As soon as he arrived back in his hospital room, Mr. Yoon, happily thinking that he was being discharged, began to pack his belongings and changed out of his hospital gown. The nurse, aware of the team’s plan for his upcoming hemicolectomy but ignorant of what had transpired downstairs in radiology, interpreted this as the patient trying to leave against medical advice. I ran into his room, ready to de-escalate the situation, only for him to turn happily around and ask in Korean, “how are you, Choi-seonsaeng?” (seonsaeng means a teacher, but here it is used as an honorific for respecting the person to whom it is addressed). His hospitalization was already difficult because of a lack of family support; his surrogate decision maker was a fellow church member of whom he had “asked for a favor.” To add to this, his English was just good enough to cause more harm than good. Had he not spoken any English, more people would have defaulted to using an interpreter. Instead, he knew just enough English to convince his doctors and nurses that he understood his treatment plans, and they would leave his room each morning satisfied when he would smile, nod, and say “no questions.” I could empathize with the struggle that he had in this hospital. As a 1.5-generation (those who immigrated before or during their early teens) Korean immigrant growing up in California, I quickly became an expert in appearing unfazed by something, even if that thing seemed very odd to me at first. Things like adults asking me to call them by their first names. Following my friend into their living room without taking off my shoes. Someone telling me, “I see where you’re coming from,” when I had been sitting down and talking to them for the past 15 minutes—I was not coming from anywhere! In most of these situations, my strategy has always been to smile, nod, and try not to say anything that might sound incredibly stupid. I am fairly certain others implement similar strategies when navigating different cultures as they travel in foreign countries. After all, most of us do not harbor the communicative finesse that Anthony Bourdain had while interacting with the locals in Parts Unknown. For many of us immigrants, “smile-and-nod” ends up being the default response in unfamiliar or uncomfortable situations, such as in hospitals. I can attest that this sense of “foreignness,” or “Asianness,” never quite goes away. Although my parents would increasingly comment that I “act like an American,” and even after I had been living in the United States longer than I had in Korea, my Korean-ness stuck around. Sometimes more, sometimes less, very much like the awkward lilt in my English that made people ask, “so where are you really from?” I would prick my own thumb with a needle if I had indigestion because I was told it would get out the bad blood. When I got nauseous, I would make myself jook, or rice porridge, because it was the only thing my stomach could tolerate. I continue to identify as a Korean—maybe Korean American on some days, but never fully just American. On my last day of service, Mr. Yoon was still waiting to get his hemicolectomy. As I explained the general plans involving surgery followed by chemotherapy, he asked if there was any way he could have some jook before his upcoming hemicolectomy. He had been ordering oatmeal, but it “wasn’t right.” I could only eke out, “I’ll look into it,” before I ran out of his room and straight into the unit’s physician’s workroom. There I started crying and babbling incoherently to my non-Asian co-intern about jook and how I simply must get some for Mr Yoon. Although crying in a workroom for sleep-deprived and overworked interns might have been a rite of passage in my residency, I cried because it had finally dawned on me that Mr. Yoon was terrified of his diagnosis. This gentleman, who was more than twice my age but still made my day by referring to me as a seonsaeng, had been smiling and nodding his way through the uncertainty of his cancer diagnosis and what was to come. He wanted something he was accustomed to, something he could bank on to make him feel better. For him, like many Koreans I know, it was the jook. Unfortunately, he had no friends or family checking in on him, let alone bringing him food that he enjoyed. For him, finding a way to get some comfort through jook was more important than hearing strangers give reassurances of “everything will be fine” and “we have a plan.” On that day, I was reminded of when I moved to a strange new city for medical school, forlornly eating dinner by myself when instead I could be surrounded by my family and talking about how our day went. I understood the sadness you feel when you are sick and too tired to do anything, but you are cooking your own jook because your mother is not there for you. I empathized with wanting to eat food that you are accustomed to and the distress you feel when you are unable to find it because of where you are or the situation you are going through. In my family, food is both comfort and love; sharing food is how I know I am cared for. For Mr. Yoon, it was not just about food but rather the lack of support he felt during his upcoming cancer treatment. I ended up getting some jook delivered to our hospital that day. I recall muttering something about wishing him an uneventful surgery as I tearfully handed him the plastic tub of jook. Several months later, I was paged to the hospital unit and found Mr. Yoon waiting for me, skin duskier than I recalled but overall appearing well. He told me that on being discharged after surgery, he connected with a Korean-speaking oncologist and completed his chemotherapy. His oncologist told him his recent scan did not show any evidence of cancer. He said he had been meaning to visit me because he wanted to thank me for the jook I had given him before his surgery. We talked for a bit before I had to leave for my afternoon clinic—that was the last time I saw Mr. Yoon. Several years and a worldwide pandemic later, I find myself fortunate to be training in oncology in a strange new city again. I am once again reminded of how difficult adjusting to a new area is and then think about how more difficult it is for our immigrant patients to navigate their cancer treatment. Undergoing cancer treatment is very much like immigrating to a different country. You cannot be 100% sure of what may happen in this new country, and no amount of second-hand information from other people can adequately prepare you for what lies ahead. You do not quite grasp the language, so you smile and nod your way through each doctor’s visit and hope things will turn out alright. When you couple this with an actual language barrier, it may feel like being lost in a foreign country without being able to ask for directions. It is important for us oncologists to dig deeper and understand the cultures from which our patients come. Instead of asking if they are eating well, ask what they enjoy eating. Are they able to eat the food they were eating before? Or are they navigating a new diet planned by a nutritionist who does not know the difference between oatmeal and jook? Have we considered what a patient’s family does to provide support, on the days when chemotherapy is too rough and the nausea is too bad? We may be surprised to find what is hidden behind the polite nods and small smiles. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and a Professor of Medicine at Stanford University. Today, we're joined by Dr. April Choi, a Hematology and Oncology fellow at Tufts Medical Center. In this episode, we will be discussing her Art of Oncology article, ‘How Are You, Choi-seonsaeng?’ At the time of this recording, our guest has no disclosures. April, welcome to our podcast and thank you for joining us. Dr. April Choi: Good morning. I'm glad to be here. Dr. Lidia Schapira: Well, it's afternoon in California, so, it's wonderful that you are someplace where it's morning. Where exactly are you today? Dr. April Choi: I'm currently in South Korea visiting my relatives. Dr. Lidia Schapira: That's wonderful, and brings us to the heart of your essay, which is a moving narrative that describes your interaction when you were a medical resident, with a patient who is a Korean immigrant. Tell us a little bit about the motivation that led you to write this article and then share it with others. Dr. April Choi: First of all, I'm very happy that you enjoyed this article. It comes from my heart, and I've been meaning to write this article for many years now, actually. And I wrote this piece initially a year after I saw Mr. Yoon again. I think one of the things that I wanted to share with everyone is how difficult it could be as an immigrant to navigate the complexities of the hospital, even if you do speak a little bit of English. And I think the cancer part really complicated his care, and I really wanted to make sure that people who might not have this interaction, because they grew up in the United States, or have never encountered someone who is from a different culture, to be able to experience, second-hand, what it feels like to treat someone who is of the same culture, but might not have the linguistic sophistication or experience working in healthcare system. Dr. Lidia Schapira: You start off the article with a little dose of humor that I found very refreshing - turns out that your patient, Mr. Yoon, is told by an X-ray tech or a CT tech that, "He's good to go." And he interprets that as, "He's good to leave the hospital", only to find that the nurse misinterprets his preparation to leave as, "He's leaving against medical advice." And that's when you enter the story. Bring us to the bedside; tell us a little bit about your interactions with Yoon. Dr. April Choi: I think, in retrospect, it might have been very funny. I do have to say, when it happened, it was a very stressful time for me. I was not in that hospital unit at all until I got this call, when the nurse was very distraught and said, "You need to come to bedside. He is trying to leave, he's agitated, he won't listen." And as I had written in my article, I ran. I ran towards his room because by then, we had developed some sort of a relationship where he would actually ask me, "Oh, what was that other doctor talking about?" So, we had a really close relationship, and when I heard that he was agitated, I couldn't believe it because he was one of the nicest patients that I had seen before. And for me to find out that he was under the impression he was being discharged after all this, I was immediately reminded of my parents, and how they speak enough English, where they can get by, but at the same time, I don't think they would be okay in a hospital setting. And I think that goes for a lot of 1.5 generation, as I talked about in my article, as well as the second-generation immigrants, where they understand everything, but for their parents, it's not the case. Dr. Lidia Schapira: So, let's talk about your parents and our patient here, and then those who perhaps just speak a little to get by. And it's easy to think that in a hospital setting where there's so many time pressures and everybody wants to be efficient, sometimes, things just slip by, and we don't take the time, perhaps, to ask as many questions, because we don't have an interpreter at bedside, or because it takes a little bit more effort. You give these examples so beautifully in your essay. What are you doing now that you're an Oncology fellow, or future Oncologist, to communicate with patients? Dr. April Choi: I actually do a lot of drawings. I think drawing is one of the strongest ways someone can communicate. So, a lot of the times I have my multicolored pen, and I will draw whichever they need to - if it's esophageal cancer, I will draw them where their cancer is located-- right before my vacation, I talked to someone about radiation fields - I will draw little rectangles, and talk about how, no, reradiation is not possible, for example. I do try to use very simple language, and when I say simple, I don't mean to say that they are any less intelligent than we are because a lot of our patients, in their own language, they're amazingly intelligent and they understand everything. But trying to refrain from using things like, "You're good to go", or some examples that people who never grew up in the U.S. might not know about, such as, one of the examples I had done was, "I see where you're coming from", and everyone seems to know that, except for the immigrants. Because, “What are you saying? I was sitting next to you; I was talking to you. What do you mean by you see where I'm coming from?” And those things, I think, people don't stop and think about, but once you say, what is the literal translation for this? And say, “Is this something, if I had heard it for the first time, something you understand?” And just taking that time to say, “Maybe this is not the most commonly used phrase.” And then, using a more direct language can really help the patients who are of limited English proficiency. Dr. Lidia Schapira: You used the expression 1.5 generation, and I know that when we reviewed the article, some of us had never heard that expression. And then, you explained to us that this refers to those who came as teens, or young enough so that they were quick to learn and assimilate into the new culture, but sufficiently grown to really also be firmly rooted in the mother culture. Tell us a little bit about where you are with this, and how this has shaped the way you've approached your life as a medical student, as a resident, and now, as an Oncologist. Dr. April Choi: I think it's impossible to talk about my medical education without talking about how I was brought up. I was actually born in the United States but moved to Korea when I was less than a year old. And I stayed there until third grade when I moved to California for the first time, stayed until fifth grade, and I moved back to Korea until middle school, then I moved back to California to start high school, and I've been here since then. So, this moving back and forth, I think, did create a lot of confusion when I was growing up because the two cultures are very different, and the medical system is also inherently very different compared to Korea. And I come from a place where in Korea you could go see a doctor if you're sick, and when I was living in the U.S., our family didn't have health insurance. So, the first time I saw an American doctor was when I was in high school. And at that time, my brother had dislocated his shoulder, and I remember my mom bringing him to the emergency department, University of California, Irvine. And at that time, she was very polite, she would say, "yes", and smile and nod to whichever the emergency doctor had told her about the dislocated shoulder. But I remember her always turning to me after he left, to say, "What about this? What about the medication?" But she didn't feel comfortable to interrupt this doctor who had come in, and ask about the things that she was worried about - this was her son. He had dislocated his shoulder for the first time. But for her to feel culturally uncomfortable to interrupt them and ask questions, and have all of her questions answered, I think really stuck with me. Dr. Lidia Schapira: I hear a lot of emotion in your voice when you talk about this, and you bring up issues of safety for people who are vulnerable. How are you dealing with this now that you have so much power, as an oncologist whose patients are placing their life in your hands? Dr. April Choi: Honestly, I feel blessed and grateful that I'm in a position where I can change things for the better. I'm currently invested in research looking at Asian-American disparity in cancer patients. And having that opportunity where I have the medical language and knowledge to explain things better for patients who are of Korean-American descent, I think is a very encouraging and powerful motivator for me to continue on. So, I think my career trajectory is for me to advocate for the, you know, Korean-American, as well as the other Asian-American patients who are undergoing the same situation that Yoon and my family were going through. Dr. Lidia Schapira: It's a beautiful story that links your attachment to culture and family, and provides the inspiration that is now driving your career as a researcher, and somebody who really is going to use all their knowledge to advance this field. I imagine your family must be enormously proud, but let's just finish by talking a little bit more about this lovely gentleman, Yoon, and his need for jook, that you've told us is not porridge, is not oatmeal but is comfort food and the comfort food that you felt he needed. Tell us a little bit about that - in how food can provide solace, and all the efforts that you went to, to give that to your patient who you felt was really quite frightened. Dr. April Choi: So, if you search jook and Google, or try to get additional information, they talk about it as if it's the same thing as congee, which is the Chinese version of rice porridge. So, jook actually isn't just made out of rice; it could be made out of combinations, or different proteins. Obviously, rice does play a main factor, but it could be made out of beans, for example, and other ingredients. But the Korean thought is that if you're sick, you need something that's easy to digest and something that's been cooked slowly so that your body doesn't have to do the work. And one of the main things is the jook. We actually have many jook specialty shops in Korea, often close to different hospitals, for example. It's the main food that's served by the hospitals if you're in-patient, although you might have a lot of different Korean food when you're hospitalized here. I think my experience comes from the fact that if you're scared, you want something that you already know, or you're comforted by - almost like a safety blanket. And when someone can't even get the basic food that they're used to eating-- if you're used to eating rice every single meal, and then you plop them down in a hospital that gives you toast for breakfast and eggs, and other ingredients that you're not used to, I don't understand how people can expect to feel at home. Is it just because someone says, "Make yourself comfortable"? It doesn’t mean that you have the opportunity to make yourself comfortable if the main food that you eat is not available? And that is something that I wanted to emphasize - that food we think is so easy to arrange for-- we have dieticians, we have nutritionists in... /episode/index/show/aoopodcast/id/25374666

Chasing Milestones: The Importance of Shared Decision-Making Between Oncologists and Patients 12/13/2022

Chasing Milestones: The Importance of Shared Decision-Making Between Oncologists and Patients Listen to ASCO’s Journal of Clinical Oncology essay, “Chasing Milestones” by Dr. Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. The essay is followed by an interview with Govindarajan and host Dr. Lidia Schapira. As a young physician, Govindarajan shares his personal and professional experiences as a cancer patient with non-small cell lung cancer and the importance of shared decision-making between oncologists and patients. TRANSCRIPT Narrator: Chasing Milestones, by Ameish Govindarajan, MD () You always remember the moment your world comes to a halt. Everything comes into stark reality, especially the inane—the socks you were wearing or the type of ceiling tiles over your hospital bed. I lay there alone, a medical student in my 20s, chest tubes emerging from my side. My doctor had just informed me that I had 6-8 months to live. I can still picture those ceiling tiles. What started as an innocuous, yet persistent, cough proved resistant to routine treatment and eventually warranted a computed tomography scan. A cavitary lesion in my right lung raised the specter of more serious possibilities. A bronchoscopy and video-assisted thoracic surgery confirmed the unthinkable—I had stage IV non–small-cell lung cancer. As a physician now myself, my mind often returns to that hospital room and how the discussion of my disease, my mortality, and my impending death unfolded. My oncologist at the time outlined my grim circumstances: genomic testing could maybe provide some hope, while palliative chemotherapy would only delay the inevitable, as I would be unlikely to see my next birthday. While waiting for my genomic testing results, I reflected on my relationship with my care team, did I feel heard? Perhaps they were right; I would not see my next birthday, but with pieces of my diagnostic puzzle pending, I still had hope. I was a nonsmoker and in excellent health, more important, being a young South Asian man would prove to be a factor that predisposed me to the genomic alteration that would be found on testing.1 In a twist of fate, it was revealed that I had an anaplastic lymphoma kinase gene rearrangement, a result found in fewer than 5% of patients and one that would forever change the trajectory of my care.1 My life as a patient with cancer and a survivor had begun. The past decade has brought with it a revolution in cancer treatment. The new era of targeted therapies, genomic testing, biomarkers, and immunotherapy has extended patient lives and provided remarkable insights into this life-altering disease. These rapid advances have also brought unexpected challenges, including the provision of care far beyond previous median survival times. As we embark on this new era of expanding treatment options, the importance of shared decision making will become even more critical to patient care in oncology. As doctors and patients work together to plan treatment, integrating the ever-expanding array of tests and therapies, consideration of each patient’s values, goals, and concerns will remain paramount. As part of this model, patients are invited to be part of a treatment team, to learn about their disease, to outline their hopes and fears, and to help contribute to decisions that will guide their cancer trajectory.2 This is not new ground of course; the shared decision model has been embraced by a field that has been moving away from its paternalistic roots. Great strides have been made in promoting patient autonomy, clear communication, and shared responsibility in treatment decisions, with programs such as VitalTalk and the 1-2-3 Project at Memorial Sloan Kettering Cancer Center helping to guide the development of effective communication skills among the next generation of oncologists.3,4 Shared decision making has become an integral part of the doctor patient relationship, helping to recognize and acknowledge the burden of disease, and providing support on the basis of an individual’s needs, values, and aspirations.2 Perhaps in part due to the shock of my diagnosis, those first experiences with my oncology team had left me feeling alone and without support. What I had imagined would unfold in such dire circumstances as a medical student did not become my reality as a patient. Throughout my training, I had witnessed the transformative power of the doctor-patient relationship and its ability to inspire and engender hope, yet I felt no such potential in my own care. Although every patient is different, and entitled to their own care preferences, I found myself seeking a team that would view and treat me as a partner in this unpredictable journey, as a young person with goals and aspirations and not one solely defined by a disease. Care on the basis of a shared decision-making model has been shown to help patients, especially during the beginning stages of treatment. Through these discussions, patients have reported an increased level of trust in their physician, a lower level of anxiety, and a higher level of satisfaction with their treament.2 Despite these efforts, a recent study found that there can still be a misalignment between what patients and doctors consider most important during their consultations.5 For example, patients reported that discussion of post-treatment quality of life was most critical to them, while clinicians continued to focus heavily on clinical outcomes, and less than half of the patients felt that their personal priorities and future plans had been openly discussed.6 Such studies may reflect the lingering hesitancy among some patients to voice their concerns or to feel empowered to guide discussions. In a recent study in which patients were asked about their discussions with their oncology team, 81% felt they had been properly informed of the short term side effects of treatment, while only half considered the discussion of long-term side effects adequate. Notably, less than half of the patients had discussed their day-to-day priorities with the oncology team, and only a third had discussed their future plans.6 Indeed, patients still perceive conversations concerning quality of life and future planning to be often overlooked or unaddressed, and few report that their preferences are discussed before treatment plans are being finalized.6,7 This was true for me at the time of my own diagnosis. I recall feeling lost and unsure how to speak so that I would be heard. Despite my medical background, I did not know how to voice my hopes and fears as a patient, what questions were appropriate, and what role I should play in guiding my treatment course. Early in my postsurgical recovery, while I was waiting to begin treatment, I spoke with a close family friend, a brother figure who was a physician. I was candid in discussing my feelings about my care team and ruminating on ways in which I could address this issue. “I think you should get a second opinion.” I stared at my friend, as it had not occurred to me, in my state of turmoil, to consider a further opinion until this moment. He went on to describe a specific doctor who was a leader in the field of thoracic oncology. “I think it’s important that you consider reaching out to her team. They may be able to help you find what you are looking for.” It was this conversation that drove me to seek out a care team that was more aligned with my own needs, to find a collaborator and doctor who could help guide me as I battled this disease. My new oncologist’s first question was, “When are you applying to residency?” This was the first time a doctor had welcomed into the room my goals and aspirations. I felt like a person rather than a patient and that my cancer was only part of my identity and journey. Our discussions moved fluidly between my treatment options, disease statistics, and my own desires and fears, embodying the shared decision making that I had hoped would imbue our relationship. I can’t help but feel deep gratitude for my friend. What may have started as a simple conversation changed the trajectory of my care and, perhaps, its ultimate outcome. I had undergone 8 months of targeted therapy with crizotinib when a new set of scans revealed disease progression. Shocked and overwhelmed, I was quickly transitioned to receive a course of systemic chemotherapy. Midway through my chemotherapy course, my oncologist presented me with an unconventional idea. A phase I clinical trial examining a new targeted therapy had opened and she believed this may be my best chance—to stop my chemotherapy and join the trial. As we discussed her recommendation, I realized that making such a decision with poise and confidence was only possible because of the trust we had developed, the time spent discussing my treatment trajectory, and the recognition of my own personal needs and goals. Although unconventional, I abandoned standard-of-care treatment and joined the trial—a decision that remains the reason that I am alive, writing this today. My story is paradoxical. While becoming a doctor, I also became a patient. What I felt was most important as a patient did not always mirror what I felt as a physician in training. It wasn’t until my intern year that I began to fully appreciate how difficult it was to engage in shared decision making consistently and purposely with my patients. Ms A was a 78-year-old woman with concomitant bacterial pneumonia and bilateral metastatic pleural effusions from breast cancer. Her cancer had recurred and metastasized to her bones, leaving her in insurmountable pain. In my naivete as a trainee, I began to formulate possible treatment plans and clinical trials that would give her more time, to generate options and treatment algorithms. It was my patient who stopped me, responding to my extensive planning with “No, sweetheart, this isn’t what I want. I’ve lived a wonderful life. I’ve seen my kids grow and I’ve held my grandchildren. I just want you to help my pain so I can be at peace.” In my haste to give this patient my own version of hope, I had made decisions about her care without aligning myself with her or her goals. It was a humbling moment. Despite my experience as a patient, I had overlooked the unique life experience and goals that this patient brought me. Perhaps in retrospect, my surprise only emphasizes the bias that we can bring to these moments and the effort we need to put forth to engage in shared decision making and to honor our patients’ wishes. As treatment regimens continue to extend survival, there remains work to be done to promote patient partnership and shared decision making.2,6 Indeed, in minimizing the role that our patients play in their treatment planning, we can inadvertently dismiss the fact that cancer is now interwoven in their life trajectory. When the term was first coined in 1982, shared decision making was born out of the desire to include and promote personal well-being and self-determination among patients.8,9 Over time, the shared decision-making model has been adopted as standard of care throughout medicine, honoring patient autonomy and the growing desire among many to be more involved in their own care. Pilot programs are emerging that prompt oncologists to partner with their patients and to have purposeful, early, and frequent discussions about treatment goals, regardless of stage, prognosis, or treatment phase.4 Numerous studies are now focusing on patient perspectives of shared decision making models and how they may be improved, and we as physicians are willing to listen and grow with this feedback.2,5 I often consider how my own disease course could have been different. If I did not have a trusting relationship and partnership with my oncologist, would I have been willing to join an early-phase clinical trial? This partnership has served as a teaching point for what shared decision making—and the trust it engenders—can achieve. A clinical trial, and the targeted therapy it was testing, saved my life and enables me to sit here and write this story. I currently have no evidence of disease but move through life with uncertainty. I continue to create new milestones as I achieve those before me—remission, another birthday, residency, and applying for fellowships, all within an ever-changing reality. By embracing my roles as a patient and a doctor, I have been gifted unique insights into the critical nature of shared decision making and what physicians can do to build stronger connections with patients. I intend to use this gift to help every patient I encounter on this unpredictable journey. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor, for Art of Oncology, and a Professor of Medicine at Stanford University. Today, we're joined by Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. In this episode, we will be discussing his Art of Oncology article, ‘Chasing Milestones’. At the time of this recording, our guest has no disclosures. Ameish, welcome to our podcast and thank you for joining us. Dr. Ameish Govindarajan: Hi. Happy to be here. Dr. Lidia Schapira: Let me start by asking you what drove you to tell your story, and then decide to share your story so publicly with an audience of clinical oncologists. Dr. Ameish Govindarajan: Yes, absolutely. My perspective is very unique, not only as a patient, but as a physician, and I felt that my story highlighted the aspect of oncology that is often not talked about; where there's a bond that is created between the oncologist and the patient, and focusing on the goal to get to the next milestone for the patient and the family members. Dr. Lidia Schapira: That's beautifully said. And in your essay, you tell us that you have been gifted unique insights into the patient-doctor relationship because you've experienced it but from both sides of the bed. Can you tell our listeners a little bit about what it was like to be a young student and be told you had this disease, lung cancer, that came as a total shock? Dr. Ameish Govindarajan: Yeah, I still remember that moment. I think my whole world just crashed down upon me, and I was very fortunate to have my family and also close family friends that were physicians themselves, to kind of help me navigate these uncharted waters. Dr. Lidia Schapira: And in your essay, what I found so moving is that you said that, what helped you craft this very therapeutic relationship with your oncologist, the second oncologist in this story, is that this person walked in and said, "Hey, what are your plans as a person?" And saw you as a whole person, not just as a body with a disease. How did that feel to you in that moment? Do you remember that? Dr. Ameish Govindarajan: Yeah. I think it's a moment that's still embedded in my mind, and I often remind myself that that is one of the special moments of my life, in my career, and in my journey as a patient. It was uplifting. I felt heard for the first time, and where I wasn't defined, not by my diagnosis, but I was defined as what I was trying to achieve, and what I was trying to become; which is a physician, and I think that was a really powerful moment with me and my oncologist. That opportunity created and essentially fostered an environment of openness, and I was tremendously grateful for that. Dr. Lidia Schapira: It sounds like a memorable and beautiful moment. And you talk a little bit about the trust that was established also - your goals were aligned, your oncologist saw you as the person that you are, and you defined these milestones. And then you said that at a critical moment, your oncologist offered you participation in an early-phase clinical trial, and it was because of that trust that you feel that you actually accepted that opportunity or challenge that has worked well for you. Tell us a little bit about that. Dr. Ameish Govindarajan: I still remember I was receiving systemic chemotherapy at that time, and I remember her bringing up this idea, and she said, "We have this clinical trial, and I really believe that this would be the right answer for us." And I still remember that - where she used "us", and that it was hard to let go of standard of care treatment. But because of our relationship throughout this entire journey, I entrusted her with the unknowing and living in that uncertainty, and I think I often come back to the saying, "Fear and faith don't sit in the same bucket." And I chose faith, and I chose faith in Science. I chose faith in what my oncologist wanted for our journey together, and I think it was a very powerful-- and it's a tremendous moment now sitting back and reflecting on this, that, what a right decision it was. Dr. Lidia Schapira: Well, you look like the picture of health, right now. So, Ameish, you've chosen to be very open about your cancer diagnosis. And this is something that every person needs to negotiate, how much they want to disclose with their peers, or coworkers, or mentors, even family, and how much they need to keep private. How did you decide how much information you wanted to share with others, and who do you share it with? Dr. Ameish Govindarajan: I battle with that every day. Self-disclosure, or disclosing my diagnosis is often not, in generally my encounters, because that's not what I'm there to do. I'm here to hear their story, and understand where their next milestone needs to happen. But I generally have discussed my stories to my peers to remind that this isn't just an order. It is so much more and completing Internal Medicine when you actually obtain a consult and you're walking down to the emergency room, you have a list of questions and order sets that you're going to place before you pull back the curtain. And when I tell my story, it's in that idea of, before we pull back that curtain, let's remind ourselves to align to the goal of what that patient needs, which will create and foster a better disposition in the long run, and they'll understand their diagnosis and disease process so much better. Dr. Lidia Schapira: So, I'm hearing you say, and from your writing, I gather, you are a strong believer in good communication, and communication that is open, and frank, and honest, and supportive. How do you think that your experience as a cancer survivor has impacted on your attitude towards your patients in your role now as a physician? Dr. Ameish Govindarajan: I think that the most powerful tool that we have is being completely transparent, but at the same time taking the time to really answer their questions. And by sharing space with them, and focusing on not just the clinical outcome, but how they will cope with this new diagnosis that is put on the EMR, and we're about to prescribe medications for, or recommend them to see another specialist. And what our job is, to make sure that we meet their metric, that we actually empower them to be their own advocate, and in order for us to actually have this advocacy being fostered, is us providing all the information that they need to make the right decision, not only to themselves but to their family members as well. Dr. Lidia Schapira: In your essay, you actually tell a story where you as a physician were entrusted with the care of this older lady who had an advanced cancer, and you were thinking about all of the options for her, and she just stopped you and said something like, "Listen, sweetie, I've lived my life. I just want to be comfortable." And you said that was a bit of an aha moment for you as well, because you understood in that moment, that you were thinking about perhaps what you would want, instead of... /episode/index/show/aoopodcast/id/25270677

Guilt and Gratitude: Staying in Touch After Cancer Treatment 11/17/2022

Guilt and Gratitude: Staying in Touch After Cancer Treatment Listen to ASCO’s Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment. The interview starts at 06:15 TRANSCRIPT Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh () It was the end of a long day in clinic. There was a knock on the door to my office and my assistant’s head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days. I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list. He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future. His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.” He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together. It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing. I called him in to my office. He looked great! He greeted me with a big smile and a hug. We went through his medical history. I examined him and looked at his laboratory results. Everything looked perfect. Avi was relaxed and chatty, asking me about my work and my kids. I was going quietly crazy waiting for the punchline. I took a deep breath and asked him: “How’s Talia?” He smiled and pulled out his cellphone. He showed me picture after picture of a beautiful 3 month old baby girl. “This is Lia,” he said. “I thought you deserved to know.” The tears sprang to my eyes. “How?” I asked. He explained that he had eventually acquiesced to Talia’s pleas. She became pregnant with sperm from a donor. He said that the pregnancy for him was nothing short of terrifying, but that as soon as Lia was born, it was obvious to him that she was his. I was overwhelmed with emotion. I realized that I had been suppressing a tremendous feeling of guilt around what had happened to Avi (and Talia). The feeling of guilt was not foreign to me. I had experienced guilt around the death of a patient or around mistakes, real or perceived, that I had made. Avi, however, was cured of his disease, and I had done nothing wrong. This was an altogether different kind of guilt: one less spoken of and less obvious. The knowledge that we as physicians are able to cure patients from cancer is humbling. The fact that we cure them but leave them with life-long and life-changing side effects is devastating. I do not know how much Avi understood what he had done for me by coming in that day. During that visit, he was treating me and not the other way round, and the healing effect was enormous. I possibly overdid it in my reaction to Avi in my office that day. But as he got up to leave and I thanked him for taking the time to share his news, I think he knew. In the years since, I have learned to ask patients to call me when they are unwell, but to please remember to also call or text me when they are feeling better. There are many who have taken this very seriously, and those messages are often a tremendous source of inspiration and reassurance, especially on difficult days. To Avi and to all my other patients who take the time to call to say they are feeling better or to share some piece of good news, who are able to see the person in their physician, and understand my need, I thank you. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content and offers enriching insight into the world of cancer care. You'll find all ASCO shows, including this one, at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we're joined by Dr. Ilana Hellmann, Attending Physician in the Hematology Department at Meir Medical Center, affiliated to the Tel Aviv University Medical School, in Israel. In this episode, we will be discussing her Art of Oncology article, 'Guilt and Gratitude'. At the time of this recording, our guest has no disclosures. Ilana, welcome to our podcast and thank you for joining us. Dr. Ilana Hellmann: Thank you for inviting me, I'm delighted to be here. Dr. Lidia Schapira: It is our pleasure. Ilana, I'd love to start the show by asking you if you can recommend to our listeners any recent story or book that has moved or inspired you. Dr. Ilana Hellmann: So, I read to escape, I don't read medical books, I don't watch medical programs. And I heard someone recently recommend, on one of your podcasts, a book by Anthony Doerr, called, All the Light We Cannot See, which I absolutely love - it's one of the most beautiful books I've read in the last two or three years. And I've just finished his next book which took him years to finish, it's a 600-page beautiful book called, Cloud Cuckoo Land, it has an interesting name. Have you read it? Dr. Lidia Schapira: I have not read that one. Dr. Ilana Hellmann: It's a wonderful book, and if you read the last one, it's no less inspiring with lots of different characters over different time periods, and they're all connected to each other by a story, by a fairytale, and it's a beautiful book. I enjoyed it tremendously. Dr. Lidia Schapira: Oh, thank you for that. I have a book for my next trip now. Dr. Ilana Hellmann: Wonderful. Dr. Lidia Schapira: Let's talk a little bit about writing in Medicine, and writing, as a way of sharing our stories with our colleagues and our trainees. What was the motivation for you to write this piece? It seemed to me, when I first read it, that it took years to put it together. But what was the driver for sending it out to the world? Dr. Ilana Hellmann: It's quite a strange story. In fact, what happened, happened a large number of years ago - the baby is 10 today. I wrote it just after she was born. It was a long, long time ago, when I saw the patient and I was overwhelmed by what happened, and I sat down and wrote something and put it in a folder on my computer, and forgot about it. What then happened, as you say, that it took years and years to finish, is that I got a call from the computer tech people in the hospital who said, "We're coming to give you a new computer, and if you don't clean up all these things on your desktop, they're going to get lost." And I found this folder that I'd forgotten about completely, and I read it and wasn't finished. You know, I hadn’t thought about it in all those years. The end part about what it had done to me over the years, and the things that have changed in my practice because of what happened came later. I think we, as doctors, not just oncologists, doctors in general - we see bunches of people during the day, and one goes out, the next one comes in, and another goes out. You know, you don't have time during the day to process what you're feeling, and you just have to get past it and go to the next patient. I find that occasionally, at the end of the day, I think, "Wow, I have to write this down." And the truth is that I've just about never shared anything of the things I've written. I work a lot with students, and we encourage students to write narratives, reflective diaries; you know, I thought, "Wow, it's kind of hypocritical of me to tell them what a wonderful thing it is to do and not share something like this with somebody else." And that's how it happened that I shared this particular piece. Dr. Lidia Schapira: So, before we go into what I think is the essence of the piece, tell us a little bit about what it's been like for you to share your writing with your students now. Have they had a chance to comment and react to this piece? Dr. Ilana Hellmann: My students haven't seen it yet. My colleagues, our residents, have all seen it, and it's been quite amazing. It's a side of us that we speak of less. There are things that are left behind closed doors, and it's been wonderful. I think people who've read it have then come to me privately and said, "Wow, that's an amazing story, and I'm so glad you shared it with me. And that's an amazing outlook, what you thought about it." So, it's been quite something. My students have been on holiday the last two months, we're just starting again with all of them, and I'll share it with them once it's published. Dr. Lidia Schapira: I think they'll appreciate it. But let's talk a little bit about this, and you just said there's so much that happens when we close the door. I don't want to trivialize the message in your essay and say that it's just about self-care, because I think it's about much more than that. So, let's talk a little bit about what it felt like to you to be on the receiving end of this gratitude. Patients often express that they are so grateful for what we've given them through our treatment, and, you know, an extension in life, or an improvement in symptoms, but it's rarer for us to really have and feel that compassion emanating from a patient, and it feels so good. Take us there. Tell us a little bit about what it felt like. Dr. Ilana Hellmann: Absolutely. I completely agree with your sentiment. As I wrote, I had no idea what was going to happen when he walks through the door. I expected something completely different. When he pulled out his cell phone and there were these pictures, it was just overwhelming. I couldn't stop the emotion; it was just amazing. And I knew that he'd come for me, literally. He'd come to say to me, "It's okay, I'm fine. I've gotten on with life, everything is good." I hadn't seen him in two years. He then disappeared, and I didn't see him again until he needed a letter for something, or other. And I've actually seen him again, I saw him two weeks ago because of this essay. And after that happened, I thought, "Wow." As you say, it's not just self-care, it's way deeper than that. And in a way, we are trained to look after our patients. The patient is the one with the disease. We need to think about what the patient is feeling, we need to make sure they don't have too many side effects and long-term stick to what we give them. And we are not trained to look after ourselves, or certainly, to ask our patients to consider what we feel, or whether what they're going through has any effect on us. But as I wrote, in the years since, I had a patient recently with lymphoma, and she was very, very unwell in the beginning, a young lady, she dreamed about going for a walk on the beach. And over the first few months that she was treated, she was very unwell and she could barely walk, and I said to her, you know, she kept saying to me, "I'm going to get to that beach. I'm going to get to that beach." And I said to her, "You know, when you get to that beach, it would be so wonderful if you could let me know." And when she got to the beach, she sent me a WhatsApp-- all she sent me was a picture of the waves rolling onto the beach. As you say, I was so grateful for her sharing that with me. And I think, and maybe this is the bottom line, that exposing that side of us to our patients makes us more human. You know, we're not just the people who hold their hand and give them their chemotherapy, and hopefully, help them get past whatever it is that they're ill with, but we are people. People like it. When I give patients my email or my phone number, I say to them, "You know, when you are not well, or whatever you need, let me know. But if you're feeling better, I'd love to hear that too." And I've never, ever had anybody dislike that. Most of them say, "That's wonderful. Absolutely, I'll let you know." And then, as I wrote, they take it very, very seriously, and it's such a wonderful thing. You know, in amongst the 20 emails of, "I've got terrible nausea, and I'm constipated, and another lump has appeared in my neck, I need a letter for some insurance," and so on, and so on, then to, "I just wanted to let you know that I'm really doing okay." Or, "Whatever you gave me, it feels better." And again, really, I think it just gives the patients a bit of a look into the human side of their physician. Dr. Lidia Schapira: And it definitely feels so healing I think for us. I was struck by your account when you talked about the fact that people walk in and out of your office, and you're constantly prepared for emergencies. Basically, our clinical time is often responding to all of the challenges and the problems that patients bring to us, because we deal with people who are so ill and it's very stressful, so, it almost seemed to me that you were surprised when what happened in that encounter was just meant to be a gift to you - an expression of gratitude, and that seems to have had a huge emotional impact. And as you were talking, I wondered, do you and your colleagues share these stories? The stories, the photos of your patient getting to the beach, and the messages of gratitude that often come months or years later? Dr. Ilana Hellmann: We do, we do. You know, as the years have gone by, technology has changed. There used to be that board in the doctor's room, where a patient would have written a letter, and would get pinned on the board - those days have gone. Today, patients, some of them write letters, and then people take a photograph, and we have a WhatsApp group, or an email-- I'm sure there was one like that, yesterday, from one of my other colleagues, who got a beautiful letter from a patient. Absolutely, absolutely. In the same way that when there's bad news about a patient that everybody knows, it's shared, when there are good things about when patients thank us, or if they're just better, you remember there was so and so who was really doing unwell. Well, you know, things are looking better. Definitely, definitely, we share, for sure. Dr. Lidia Schapira: So, how do you think this experience affected or changed your practice and how you treat in future patients? Dr. Ilana Hellmann: When I called Avi, the patient in the essay, and I hadn't spoken to him for many years-- he disappeared from follow-up, and it happens - young patient, he had better things to do than come and see his hematologist. When I called him, immediately, he recognized my voice when I said, "Hello", and he was very happy to hear from me. And when he heard why, and I sent him the piece, he was overwhelmed with the effect that it had on me. Immediately, we made a date, and he came in for an appointment, and we chatted about it. He had a lot to say about the essay. He was very, very stunned, in fact, by the accuracy, from his point of view, of how I had described him and his wife, and what they'd gone through, and what had happened, and he wanted to know if things have improved. You know, back when he was ill, it wasn't so easy to find a psychologist for him. It wasn't something that was-- now, we have two psychologists who work with us, and things are a lot better. But his biggest question to me was, he said, "You know, I never thought about your side. It never occurred to me that what was happening to me was affecting you." He said, "You know, are you counseled? Does somebody look after you?" That's a difficult question. It's not such a comfortable question. I don't what you would answer to that one. But certainly, not officially. There's definitely no special time to work through-- you know, things come up when we have meetings, but it's not as if I have sessions to say, "Oh, I had a bad day, and this is what happened, and so and so, and whatever," but I share more with my patients. They're sad, I say, "Yes. It makes me sad too." I used to think maybe it made me weaker, or it was unfair to the patient to show them my emotion, and I've learned that I think it's absolutely fine, to a certain limit, to show them that I'm human, and I'm with them, and that's okay. And as I say, I'd ask them specifically to share good things with me, and not just bad things. And it's something that I tell my residents and students, I say, "Even people who are unwell have good moments, and we need to encourage them, and also enjoy them ourselves." Dr. Lidia Schapira: I think we could talk for hours, and I sincerely hope that the listeners will talk with their colleagues - so, with somebody else about these same issues. I think it's a fabulous conversation. I'm not trying to evade answering your question of what I would've said, or what I would say; I had an almost transformative moment many years ago when I was a young oncologist, and a patient who was incredibly kind and tuned into me, who had metastatic cancer, saw my expression when I walked in the exam room, and she said, "You're having a bad day." And just that moment of empathic connection, when she recognized that I was under stress, I clearly showed it, was enormous for me. And I felt such deep compassion from her and was able to then turn this into a self-compassion moment, and then I sort of reset myself, and we had a good visit. But since then, I've been much more aware of the fact that our patients do also... /episode/index/show/aoopodcast/id/25049343

People Like Us: What it Means to be an Outsider in Oncology 11/08/2022

People Like Us: What it Means to be an Outsider in Oncology Listen to ASCO's Journal of Clinical Oncology essay, "People Like Us," by Dr. Stephanie Graff. The essay is followed by an interview with Graff and host Dr. Lidia Schapira. Graff reflects on her life experience as a female physician, farmer’s daughter, mother, and pie connoisseur to connect and help her patients get through a life-altering diagnosis. TRANSCRIPT Narrator: People Like Us, by Stephanie Graff, MD () I was standing in the dining room on the 15-year-old burnt sienna carpet, so heinous that it could have only been chosen because it was on sale. I remember the afternoon light from the western windows falling across the oak dining table which matched my mother’s brusque, wooden tone. She remembers nothing. She does not remember saying the words that I have so often replayed, pondered. I was stung by the interaction in a way that rendered me speechless, in a way I now recognize too often in my approach to conflict in adulthood: silence assumed to represent understanding, consent, or complicity. Weeks earlier, this same woman drove all over our small town hoping to catch the mailman before driving to my track and field meet 30 miles away. I was waiting for word from the University of Missouri-Kansas City (UMKC) School of Medicine, and I think my mom was as anxious to hear as I was. Conveniently, her brother (my uncle) was our mailman. When she arrived at the track meet, she handed me the large envelope proudly bearing the school’s logo in the return address. I tore it open sitting with my boyfriend on the bleachers, seeing my prayers answered in black and white before my eyes. There is a photograph of this moment, so I can describe perfectly what I am wearing: my royal blue and white track uniform, my sprinters spikes and—I am sorry to tell you—a neon green hair scrunchy. This photograph also proves, in that instant, my mother understood that what was unfolding was a milestone moment in my life. I remember asking her later when I discovered she tracked the mailman around town to get the mail what she would have done if I had not been accepted. She replied that she knew I had gotten in from the size of the envelope, so she never had to think about it. I like to imagine my mom also had faith in me that led to the wild goose chase for the mailman, even before she saw the envelope. Within the envelope, in addition to the acceptance letter and glossy brochure telling me all about my wonderful new life as a UMKC medical student, was a parental consent form. The 6-year combined BA/MD program at UMKC was far from inexpensive, and, as a minor, I would need my parents to sign this letter stating that they agreed that we would pay the tuition. Of course, by we what was really meant was I would be taking out student loans to cover every single cent of tuition, room, and board. But the letter, with a DUE BY date ticking ever closer, had been sitting on our dining room table since the day the acceptance arrived, unsigned. My father signed things like this. Never my mother. My mother would not even broach the subject with him. Nice families in rural Missouri just do not talk about money or politics. So, there it sat, a white paper elephant in the room. “Mom, when is dad going to sign my acceptance letter? The deadline is soon, and we still have to mail it back,” I pleaded with her that afternoon. She turned to look at me, en route from the dining room to the kitchen and said, “Stephanie, people like us don’t go to medical school.” People like us? Who is this us? Women? Mid-Missouri farmers? People from small towns? Our family specifically? Poor people? I may forever regret not asking. I may forever regret that moment of stunned silence where I only wondered if she had just said no to my dream and considered my next move very carefully so as to not make it worse or potentially close a door forever. By the time I asked her, years later, what she meant in that moment, my mother had no memory of saying it to me. This innocuous phrase, “people like us” that haunted me for most of medical school. Eventually, of course, my father signed it. Only a day or two before the deadline as my memory recalls. He sat me down and told me it was a lot of money and asked me if I was serious about this whole doctor thing. I assured him that the one and only thing I had ever wanted to be had not changed in 10 years, after a short-lived dream of being a country western singer and that it was unlikely to change now. Then, he had signed the consent, which I had taken immediately to the post office before anyone could change their mind. Yet, those words kept bubbling up. When I struggled with a test or subject, I wondered if people like us always had a hard time with organic chemistry or neuroanatomy. When my classmates talked about their exotic travels to tropical getaways or international hotspots, I sheepishly admitted people like us do not travel much. When patients assumed the female medical student was a nursing student rather than a medical student, I assumed that was just what happens to people like us. When I mispronounced something or exposed my total ignorance into the broader process of step examinations, residency, the road to physicianhood, I figured it was just the sort of thing people like us cannot help. Then one day, a patient newly diagnosed with melanoma shared with me that he was worried about how treatment would interfere with farming. “Well, what kind of farming are we talking about?” I probed. He raised cattle, had some corn and hay fields. “Oh really? What breed? How many head?” We fell into the easy talk of farm life, and he shared his current toils of repairing his tractor. When he left, his wife pulled me aside and confided, “It really is nice to know that his doctor is one of them.” When I start to write a prescription, I often stop to think about the cost, about how $20 US dollars is a big deal to people like us, and I talk to patients about what is financially possible, what help they need, what resources we have. One of my breast cancer survivors always framed her chronic lymphedema symptoms in terms of how much or how little it held her back from baking pies. We shared recipes of her grand champion state fair pies and my mom’s own grand champion pecan pie. I could understand the flurry of activity and pressure to bring your freshest, most beautiful pies to the fair because I shared that lived experience. Patients like this, one by one, started me thinking that maybe more people like us should be in medical school. I know the statistics for my own field of medical oncology, and few oncologists practice in rural areas, despite the community needs. I have no statistics for how many of my colleagues grew up farming or preparing for state fairs every summer. But, I have answered phone calls from my mom, asking advice about what aspects of farming are safe when you are neutropenic or how best to plan Moh’s surgery around harvest. People like us are necessary to fill those gaps. As a woman in medicine, numerous women have reached out to me to ask me questions about the duality of medicine and mothering or the intersection of work and sex. My emails, text messages, and social media feeds are filled with threads on breastfeeding at work, daycare solutions, unique challenges in leadership for women, and advice on career growth. These conversations ring with the chorus of someone like me as we connect over similarities. My mom recognizes this version of like me as well, handing out my phone number to women in the intervening years from my hometown applying to my alma mater or medicine in general. If community and connection with other women improves career experience for women in oncology, I am glad there are people like us. And as much as I see a need in medicine for people like me, I also see all the ways I represent privilege—which of course means that there is ample space in medicine for people not like me. If the numbers of rural or female oncologists are low, the numbers of Hispanic/Latino, Black/ African American oncologists are startling. How can we collectively provide culturally and linguistically competent care if our workforce does not share the same diversity as our patients? So, mom, 25 years later, I think we have both grown to understand medical schools need people like us, people like all of us. I think you have felt that as much as I have over the years in your own connections with doctors caring for members of our family or in the health questions you save for me. When I sit with a patient as their doctor, I am also there as a woman, farmer’s daughter, mother, writer, baker of pies, and so much more. Each time one of these versions of me creates connection with a patient or colleague, my care improves. Each of our unique gifts and experiences help us connect with our patients in ways both big and small. Medicine needs people like us. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. Today, we are joined by Dr. Stephanie Graff, Director of Breast Oncology at Lifespan Cancer Institute, and Assistant Professor of Medicine at Legorreta Cancer Center, at Brown University. In this episode, we will be discussing her Art of Oncology article, 'People Like Us.' Our guest's disclosures will be linked in the transcript. Stephanie, welcome to our podcast and thank you for joining us. Dr. Stephanie Graff: Thanks so much for having me. Dr. Lidia Schapira: It is our pleasure. So, I like to start the show by asking our authors what they are currently reading and would recommend to listeners. Dr. Stephanie Graff: I am currently reading The Power Broker, which is kind of a funny book to be reading. It's obviously an older book, and it's the story of Robert Moses who famously, or infamously, perhaps, built New York City, and sort of wrote the power structure of city government or state government and politics in New York, and it's written by Caro and is a Pulitzer Prize winner, and I just have never read it. It's quite the tome, so it's hard to power through, but it's excellently well-written, and really insightful into political culture and the history of New York. So, I'm finally working my way through it. I'm not sure that I would recommend it for the average reader. I just finished The Sentence, by Louise Erdrich, and, Unlikely Animals, by Hartnett, and both were delightful reads. Dr. Lidia Schapira: You are a gifted storyteller. I wonder if you could tell our listeners and share with us a little bit about your process and when you write, how you write, and what inspires you to write. Dr. Stephanie Graff: When I write and how I write, I think the answer is, all the time. You and I may have talked about this before. I feel like writing is often how I decompress, and I find that I'm often writing in my head all the time. So, when I'm walking my dog, when I'm driving my car, when I have downtime, I'm sometimes turning over ideas or events and looking for the thread or the storyline there. I write poetry, actually mostly for myself as my form of journaling, or meditation, or rage, or sadness, whatever it is I might be feeling. And sometimes that then turns into something narrative, and that's a habit that I've had for a very long time, even as early as middle school and high school, it was a habit that I've always had. In terms of then turning that into something narrative or publishable, I think that that's more of an ‘aha’ moment where an idea that I've been turning over for a while finally feels like there's a unifying theme, or thread, or a particular patient encounter, or a funny thing that one of my children said inspires it to become this sort of 360 moment that makes it feel more like thematic story that can be told. Dr. Lidia Schapira: So, given your expertise with stories, and your appreciation of literature, and the fact that you've now lived in the world of Oncology for quite a while, what is your opinion of the role of stories and narratives in our culture and our approach to training others, and sort of sustaining that sense of vocation I think that drove us all to choose a specialty in the first place. Dr. Stephanie Graff: Yeah. I think that story is so important for how we relate to one another, and how we relate to our patients because I think that, you know, if we're just talking to patients about a phase III randomized clinical trial and throwing at a patient a bunch of statistics, or metrics, or guidelines, it's not digestible, or understandable, or relatable. And so, being able to talk about what we do at the story is what makes that understandable, memorable, digestible for patients, but also for our colleagues, and our students, and residents, and fellows, staff, everyone that we interact with in our day-to-day experience. And so, I think that really thinking about The Art of Oncology, the practice of what we do day-to-day as parables, and stories, and looking for ways to turn that science, that data into little anecdotes is really so central to understanding. Dr. Lidia Schapira: Let's talk about the story that you so beautifully wrote, ‘People Like Us’. Thank you for sharing that and sending it out to the world. I assume this is something that you've been thinking about for decades, and I, since you don't look like a teenager waiting for mom and dad's approval to go to med school. You know a good story, Stephanie, I'm sure you agree, allows the reader to project into, and imagine things. And there were two big themes for me, and one of them had to do with the mother-daughter relationship. So, can you talk a little bit and share with us a little bit about that aspect of the story of the words that your mother said at a very tender age that sort of stuck with you and kept on giving? Dr. Stephanie Graff: So, for those listening, the story is that my mom said to me after I had been accepted to medical school and was kind of waiting for my parents to sign the acceptance letter, I went to the University of Missouri, Kansas City six-year program, so I got accepted to medical school, straight out of high school. And because I was 17, they had to sign this parental consent in order for me to actually start. And so, this letter was like sitting like the elephant in the room on my dining room table for, I don't know, two weeks or something, waiting for them to sign it. And my mom one day, in a moment, that to her was, I mean, she doesn't remember it. So, like to her clearly, it was like this nothing-passing comment, like, you know, "Pick up your shoes." She said “People like us don't go to medical school.” And at the time, I was so struck by it, but I have no idea who this "us" was that she was referencing. And I have spent decades wondering, in retrospect, "Oh, why didn't I ask questions?" You know, my mom actually was this amazing hero to me in my childhood. You know, she was a Girl Scout leader, and I got my Girl Scout Gold Award, she created all these opportunities for leadership and engagement in my community. She taught Sunday school. She graduated high school but just has a high school degree. She never went to college herself, because she was actually told by her parents that girls don't go to college, that girls get married and stay home. And so, though she wanted to go to college, her parents closed that door for her, and so she worked a factory job to earn extra money to help support the things that my siblings and I all wanted to do that, you know, kids' activities get pricey. Eventually, the factory job was physically demanding on her as she aged, and she ended up applying to become a paraprofessional in the schools, and so spent the second half of my childhood working as a para in our schools, which actually also ended up being a very physically demanding job. But really all kind of just out of determination and passion to create opportunities for us as children. So, in no way is this story meant to be a shot at my mom. She's been a really, really great mom. And again, she has no memory of saying this thing to me that has stuck with me so harshly, perhaps over the last several decades. But she said it, and at the time I was kind of like, "What does she mean by this?" I mean, obviously, I already had a lot of doubt about whether or not medical school was going to be right for me or if I was gonna fit in there, and for her to say that, I was kind of like, "Oh gosh, maybe people like me don't go to medical school." And then as I entered medical school, medical school was hard. It was hard as an 18-year-old. I struggled in classes, there were lots of moments where my peers were just more worldly than me. They had traveled, they came from backgrounds where most of their parents-- I had so many classmates whose parents were both physicians, and so they didn't struggle with the language of Medicine, the career paths of Medicine in the same way that I did. You know, my mom's words just kept coming back - people like us don't go to medical school. It was something that just sort of kept coming up over my career. Dr. Lidia Schapira: So, who are those "People Like Us"? Have you figured it out? I certainly enjoyed reading all of the possible spins of People Like Us - people who come from farm backgrounds, people who aren't rich and worldly, perhaps women. Who are these "People Like Us?" Dr. Stephanie Graff: Well, at the end of the day, I think all of us are People Like Us because you know, if anything I've learned in my last 20 years of this, is that everybody has those feelings of self-doubt, and feelings like, "we don't fit in." And hopefully, those are coupled with moments of feeling like you do belong, and hopefully, everybody has a network of belonging. But we're all periodically thrust into times where we don't feel like we fit in, and we don't feel like we belong. And there's so much that can be drawn from those moments. So, whether it's that you are from an underrepresented group, from your ethnic or cultural background, your socioeconomic background, your gender, your sexual identity, you know, no matter what that is, your parents' occupation, if you're the first person in your family to go to college, you are going to bring the tapestry to Medicine that helps us kind of richly relate to our patients in a way that's so cool. One of my favorite studies that I've seen in the scientific literature is actually not an Oncology study, it's a Cardiology study that looked at patients presenting to emergency departments with heart attacks, and it was a gender inclusion study. And what it looked at is in patients that have heart attacks in the emergency department, if the cardiologist caring for the patient is matched gender, like a man caring for a male heart attack patient, they have a better outcome. But if that cardiologist has a partner that is of the same gender, so like if the male cardiologist has female partners, their care of female heart attack patients improves, and that patient's cardiac mortality improves, which was so fascinating that like just having a greater exposure to female cardiologists helped male cardiologists provide better care to female patients. So, I do think that just gathering experiences of the people not like me, that surround me all day, help me relate better to my patients. There's certainly so many cultural celebrations, travel experiences, world celebrations, that I... /episode/index/show/aoopodcast/id/24934731

Preparing for the End Game: An Oncologist Shares His Reflections After a Close Friend’s Death 10/25/2022

Preparing for the End Game: An Oncologist Shares His Reflections After a Close Friend’s Death Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer. TRANSCRIPT Narrator: Preparing for the End Game, by William T. Beck, PhD () Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case. Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay. Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well. My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed. One frequently hears about people who have survived near-death experiences or those who have been diagnosed with a terminal illness, having an epiphany and wanting to live each day to the fullest extent possible. One also hears about realists who exhort us to live every day as if it were our last. Certainly sound advice. But do we normals really adhere to these dictums? Many people probably do, but my experience, both personal and from talking with friends, is that most of us still go about our lives doing the quotidian things that we have always done. There is always tomorrow, but Jordan's illness has caused me to rethink that. Indeed, it has become increasingly clear to me, finally, that I should not put off doing things for another tomorrow, a tomorrow that is not guaranteed. Despite knowing—in the abstract—that much more of my life is behind me than in front, my good health and full days have led me to think that this can go on for some time, with the inevitability of death still relatively far in the future. Jordan's situation, however, has changed that perception and has got me thinking about how I would like to spend my remaining days, hopefully many, and thinking about how to really prepare for this end game, taking these final laps. Paul Kalanithi, a young surgeon, wrote so tenderly in When Breath Becomes Air2 about his struggles while suffering the ravages of lung cancer and his hopes for his wife and young children. Even at my advanced age, I too have similar hopes for my wife, children, and grandchildren. And Christopher Hitchens chronicled, in Mortality,3 his last year with esophageal cancer as fiercely as he had always done in his critical atheist's view of the world. But it was not until Jordan's sickness and death that I have taken Hitchens's clear view of life's limitations to heart. In his book, Being Mortal,4 Atul Gawande, the physician-writer, has chronicled both the advances and limitations that modern medicine has brought us as we face the end, including the complications that limit our autonomy in this passage. Gawande notes that as we age and become infirm, either as a normal process or because of disease, we become more dependent on medical and social networks that may, unfortunately, effect on our independence. Gawande suggests that a good death may be difficult to achieve but a good life less so. I saw this good life in Jordan's terminal illness. Indeed, another physician-writer, Oliver Sacks, emphasized in a short collection of four essays entitled Gratitude,5 the utility of a good and fulfilling life in helping us cope as we approach the end. Near the end of his life, as his body was being consumed by cancer, Sacks continued to do what he always did, for as long as he could: His days were always full, and he wrote beautifully of his clinical and social observations. Importantly, Sacks expressed enormous gratitude for his life as a sentient and thinking person, who loved and was loved, and whose life was consequential. What more can one want? My friend Jordan was such an individual: sentient, smart, and funny; a man who lived a consequential and impactful life, who loved and was loved. His illness, however, was not one of going softly into the good night, as was depicted in the movie Love Story.6 Toward the end, my friend suffered with pain, balance problems, fractures from falls, shortness of breath, insomnia, and the like. But through it all, he presented, at least to me, an admirable grace and equanimity that gave us all hope that despite his suffering, there would be one more day, one more week, one more month. My wife and I went out to northern California last winter to visit Jordan and his wife, and although unsaid, to say good-bye. But now, more than a half year later, he died, just days short of their 50th wedding anniversary. We have stayed in close contact with Jordan's wife since his death. The funeral was private, but my wife and I attended a subsequent memorial service for Jordan at which family, friends, and colleagues remembered him and his consequential life and bid him a proper farewell. So, here we are. My good friend is gone, and his struggles have been hard to watch, even from a distance, but he has helped me see more clearly that this all does come to an end at some point. So how do I want to pursue this end game? Certainly, I want to stay engaged in my science-related activities. But I also want to use what time I have left while I am healthy to spend as much time as I can with my wife and family, to be with good friends as much as they will tolerate me, to continue to read, to go to theater and concerts, to travel, finding humor in life, and enjoying good wines and food—all the typical things that people do and say they want to do as they approach the end game. Indeed, I want to do as many of these things as possible, but with a renewed sense of wonderment and gratitude, gratitude in the way Oliver Sacks expressed it. My friend, Jordan, the academic, still has some lessons to offer, so I will try to follow his example to live as good a life as possible, and if I become infirm, I will try to remember how he approached the end: with grace, courage, and equanimity and reflect on all the good things I have had in this life, with a great sense of gratitude. Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one at: podcasts.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. William Beck, a university distinguished Professor Emeritus, and Professor of Pharmacology and Molecular Genetics at the University of Illinois, at Chicago. In this episode, we will be discussing his Art of Oncology article, 'Preparing for the End Game.' At the time of this recording, our guest has no disclosures. Bill, welcome to our podcast. Thank you for joining us. Dr. William Beck: Thank you, Lidia. I appreciate the opportunity. I think this is a unique and valuable feature of JCO, and I hope I can do it justice. Dr. Lidia Schapira: It's terrific to have you. Tell our listeners a little bit about the motivation for writing about Jordan, and the effect that his illness and passing had on you. Dr. William Beck: Yes. Well, his illness and death made me think of my own mortality, and how if it were me, would I want to spend whatever remaining days I have, hopefully, many. But hopefully, in a way that would allow me to honor his life, and also do justice to my own situation. So, that was the nexus of the issue. I spoke to a writer friend, Eric Lax, he's written a number of books; one is, The Mold in Dr. Florey's Coat. If you haven't read it, I highly recommend it. It's about commercialization issues during World War II, and he's written some other books as well, a book with the hematologist Robert Peter Gale on radiation. And I asked him what he thought about this, and he was very positive. As you, I'm not accustomed to opening myself up in the scientific literature. I write scientific papers, and they're not emotional. One might get emotional about the reviewer's comments, but that's another story. And so, this was a difficult thing for me to write, but I felt if done correctly, it might be useful not only to help me articulate my own feelings, but it might be useful for others, especially oncologists with whom I've been around in my entire professional life, and who deal with these matters daily, as you do. But most likely, and of necessity, keep their thoughts and their own mortality locked away. And I sort of thought that this might be a way to help others think about ‘Preparing for the End Game’. Dr. Lidia Schapira: You bring up some interesting points because in order to write a piece that will resonate with others, you have to allow yourself to be vulnerable, and that is not something that we are taught to do in our academic and professional lives. Was that hard for you? Dr. William Beck: Very, yes. Dr. Lidia Schapira: And how did you work through that period of deciding to make yourself vulnerable and then share that with colleagues whom you may never know or meet? Dr. William Beck: Thank you for that question. I wanted to write somewhat of an homage for my friend, Jordan, and that made it a little easier to open myself up. And I might add, I shared this, after it was accepted, with Jordan's family - his wife, who is a friend, and his two adult children. And they all very, very much appreciated what I had done. So, I felt I was on the right path with that. So, it was in part for an homage to Jordan, and I had walked with him and his wife during his illness, and then with his death, and I wanted to mark the event in a way that I felt more than just giving money to a memorial fund. I felt I wanted to make it very personal, he was a good. I don't know if that answers your question, but that's why I started it. Dr. Lidia Schapira: In thinking about your essay and the way you chose to honor your friend and his memory, what do you think is the message for some of our young readers? Dr. William Beck: That's a good question. I put myself in the 40-year-old Bill Beck mindset, and back in those days, as I said in my essay, you know, everyone has to die, but in my case, I thought an exception would be made. Jordan's death, and those of others around my age have led me to understand that an exception will not be made, and I want to make the best of it, and if our young readers who know that this is an abstract that's very far away, but it becomes more and more of a reality as you approach the end, and I'm guessing that our younger readers who are oncologists can wall that off with difficulty, but can wall it off to a certain extent. But it's there. It's inescapable, and so, maybe preparing early, if it even makes you think about enjoying a little bit more time with your kids, enjoying a vacation for another day, or even putting a little bit more money away for your IRA for your retirement, that could be very useful for them. Dr. Lidia Schapira: On the flip side of that, Bill, you write in your essay that you have continued to remain involved in your science, and I imagine that's because you love your science. So, tell us a little bit more about how you're thinking now, as you are mature-- I won't use the word senior, or old, about continuing to remain involved in a career that is not just work, but something that you love. Dr. William Beck: I could not imagine retiring. What I enjoy about my retirement is that I basically do everything that I did before, except the administrative part - the running a department for so long. And I do it on my schedule, not somebody else's schedule, and that is liberating. I just came back from a two-hour lecture that I gave yesterday; I mentor young people, I review grant applications and manuscripts, I read the literature. So, I stay involved. I can't imagine not being involved. And as Oliver Sacks, whom I've cited in the essay, he went at it all the ways best he could all the way to the end, and I hope that I will have that opportunity to do so as well. Dr. Lidia Schapira: What advice would you have for some of our listeners who are themselves accompanying a friend who is ill, or perhaps a relative who is facing a chronic or terminal illness? Dr. William Beck: I'm loath to give advice, but I would suggest that they might want to be there as much as their friend wants them to be there for them. To be there, and for them to know that they're there. I was in a unique position because I knew a little bit about the cancer field, and I could help Jordan and his wife navigate the shoals of interacting with physicians, and understanding their drugs, and getting second opinions, actually, for them. So, I was in a fairly unique position, but I think that the key thing is to be there to the extent that the individual wants you to be there with them is important. That's what I've learned from my deep emotional involvement with Jordan, but with others as well. Dr. Lidia Schapira: As you know from reading the essays we've published in Art of Oncology, Grief is a common theme, and I ask many of our authors to recommend, perhaps, some books they've read, or works of art that have helped them in processing their own grief. So, let me ask you if you can recommend any books, or poems to our listeners. Dr. William Beck: I'm not much into poetry, but I did happen to see an amazing interpretation of Psalm 23 on the Jewish Broadcasting Network recently that was eye-opening to me as a non-religious person. That was very interesting. In terms of books, I think a good start is the beautiful essays of Gratitude by Oliver Sacks. I've started to peel into, and peer into a book on Morality, by Jonathan Sacks-- no relation, I don't think. He was the Chief Rabbi of the UK. And in terms of art, I can think of music - the ‘Pastoral’, by Beethoven, and the ‘9th’, by Beethoven, are the ones that just are so uplifting to me, that I think would be very important to calm one's soul. Also, if I might add, The Stones are pretty good too, for that. Dr. Lidia Schapira: So, let me conclude our interview by asking you a little bit more about the role of storytelling, and essays, and narrative, in helping us come together as a community of professionals who are actually dedicated to looking after patients who are seriously ill. How have you used stories in your approach to Medicine and Academia, and what do you see as the role of these narratives in the future education of oncologists and hematologists? Dr. William Beck: So, I think young people, especially, need to hear stories of how these things begin. They need to hear origin stories, and middle stories, and end stories. Joseph Campbell, is one who's delved into where we came from, and about storytelling, as being very important in development of societies and traditions. So, I've tried in my work, even though it's scientific work, and maybe some of my reviewer critics would say, "Well, it's all stories and fables," but I've tried to develop several lines of science storytelling for our colleagues. And I think in general, whether it's in science or this kind of essay, yes, it's very important that the young people get outside of the, "What do I need to know for the exam?" mentality, to look at the bigger picture; and I'm afraid that's getting lost in modern education. The guy who introduces me, when I give the general lecture to all the students who are first time, first day in the room, never to be in the room again, always says, "And Dr. Beck won't answer any questions about what's on the exam." Dr. Lidia Schapira: Well, I thank you for sharing some of your humanity with the readers of JCO, through the essay. I know, as you told us, during the review, that you're not used to writing these kinds of essays, and you're much more comfortable with scientific work. But I think we need to show the human side of our scientists. I think that Jordan's family is right in thanking you for the tribute you paid to him through this essay, and I'm very glad that you did write it, and decided to share it with us. Dr. William Beck: Thank you. Well, I'm really glad that you have this venue, and I'm honored to have my essay published in it. I thank you, and your colleagues. Dr. Lidia Schapira: Thank you, Bill. Until next time, thank you for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us , wherever you listen. Be sure to subscribe, so you never miss an episode. JCO’s Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at: . The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and... /episode/index/show/aoopodcast/id/24782574

Being on the Other Side: An Oncologist’s Perspective on Grieving 10/11/2022

Being on the Other Side: An Oncologist’s Perspective on Grieving Listen to ASCO’s Journal of Clinical Oncology essay, by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined. TRANSCRIPT Narrator: Being on the Other Side: An Oncologist’s Perspective on Grieving, by Shannon MacDonald, MD As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept. Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study. It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us. In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night. Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes. Dan had to face additional challenges. He developed bilateral avascular necrosis of his hips from the single dose of steroids given to him when multiple sclerosis was thought to be his diagnosis. This led to bilateral hip replacements and a year on crutches. This experience taught me to appreciate the subjective nature of function loss: I had perceived vision loss would have the most profound impact on his quality of life, but undergoing hip replacements and loss of mobility were unequivocally worse for Dan. In fact, this triggered such emotional distress that it challenged our relationship more than ever. Anxiety dominated over depression, and rather than medication, Dan used alcohol to soothe his pain. Over time, with therapy and lots of tears, we accepted this life with appreciation for what is truly important and we learned to ignore the trivial. We grew closer than ever, and, for this, I will be forever grateful. I find comfort in the thought that we lived together with more emotion and a deeper passion for each other and for life. Dan died of a sudden cardiac event during a business trip. When his dad called to tell me the news, I was doing yoga, and I recall him asking me “are you sitting down?” So, I kneeled on my yoga mat. I can’t recall how many synonyms for death he attempted before he was forced to say the word “dead” to make me understand what had happened. When I got off the phone, I quickly called my sister and bluntly said “Dan is dead” and then repeatedly apologized for not asking her if she was sitting before I told her. I was derailed. I felt utterly unprepared for a life without the man who provided me with guidance, confidence, and experience that I had not had on my own. I never knew what true anxiety was until his death and would never again feel anxious about public speaking after giving his eulogy. I will forever be grateful for the people in my life who sat with me silently, fed me, and even slept in my bed in Dan’s place. They would later recall memories in those early disorienting days that I did not. After reading that people often sigh when grieving, I asked my friend Alice if I ever sighed. She looked surprised and responded, “Shannon, you cried softly and sighed all day long.” When I was disappointed that I never dreamed that Dan was alive or woke up having forgotten that he was dead, those closest to me said that I would wake in the middle of the night reaching for him, realize he was not there, and then settle back into some sort of sleep. After his funeral, I became obsessed with determining exactly how he died, as if figuring it out could bring him back. The wait for final autopsy results was excruciating, but the findings of a hypertrophic cardiomyopathy likely related to his mitochondrial disorder was utterly unsatisfying. I remained convinced that if I had joined him for that business trip as I had planned to, I would have been with him, and he would still be alive. I still believe this. I also remember telling his father about my feelings of guilt, and he replied with both surprise and relief saying, “I feel so guilty too.” For months, I could not think of any future and preferred to live in the past. The sadness of missing him was more comforting than the thought of moving forward in a life that did not include him. Although I never thought of doing any harm to myself, I remember spending an hour convincing a patient to accept treatment for an advanced cancer only to walk out of her hospital room thinking that if I were her right now, I would do nothing and welcome death. With the support of friends, family, and therapy and the passing of time, I slowly became more functional and was able to reintegrate into society. My grief morphed into anxiety and feelings of guilt when my memories of Dan became less vivid as if I was not honoring him enough. When I finally had the courage to pack his clothes to give to charities, I was saddened that it evoked less emotion because they no longer carried his scent. What I had thought of in the past as “moving on” and a healthy step in the grieving process was not a simple forward advance but came with a longing to return to a period of greater grieving. Moving on and making new memories made me feel disloyal, as though I was abandoning him. With time, I came to accept my new life that was so different than the one I had planned. Eventually, I reached that place that Didion described: “I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us. I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.”1 But this took time, support, and a disciplined effort to change myself by reimagining my values and creating a new identity that did not include my husband or the children we planned to have together. My evolution aligned with the teachings of social scientist Boss,2 who refuted the idea of finding closure and instead posited that we must learn to live for a future that contains the loss. I learned over time to accept the discomfort it caused me to speak of him in the past tense. I could be true to myself; my identity was shaped by Dan but not in the present. I learned to say “I” instead of “we.” I accepted that my niece and nephews—and all my patients with pediatric cancer—would be the children in my life. I met a man and partner secure enough to be with a woman who speaks about a man she loves that is not him. Grief is personal, and I am only an expert in my personal grief. I found the support from colleagues, family, and friends helped me, but they could not make me feel close to my old normal—only Dan’s return could have done that. I learned that some people simply could not acknowledge the loss and that in turn had a profoundly negative effect on our relationship. Even a card or e-mail would have sufficed, but silence created an awkwardness that was hard to bear. I was told by a coworker that a colleague had tried so many times to say something to me but was too afraid that he would say the wrong thing, so he said nothing. Hearing this helped me understand how his silence was not because he did not care but because his fear of hurting me by saying the wrong thing was paralyzing. I also discovered that avoiding conversation that included Dan made Dan feel more dead. I would have preferred to speak of him, even if this made me emotional. I learned to answer the “how are you” question by replying okay, as I could not lie and say “well.” When my nephew died, I texted my sister daily “How are you on a scale of 1- 10?” She loved this. People said perhaps well intended but strange things, such as “don’t worry. You are young and will marry again.” and “you are lucky you did not have children and you will be a mother to somebody else’s children.” With these comments I heard, “Dan is replaceable” and “it is good thing that you don’t have a piece of him in a child you shared.” I recognized that I sometimes needed more space and that loneliness can feel unbearable. I had no way of predicting my needs, which made it difficult to plan ahead. I found it took years to work through my emotional pain and am forever grateful to those who believed in my ability to heal myself. Dr. Lidia Schapira: Hello, and welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows including this one at I'm your host, Dr. Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. Today, we are joined by Dr. Shannon McDonald who's an associate professor at Harvard Medical School and a radiation oncologist at the Massachusetts General Hospital, and Mass General Brigham in Boston. In this episode, we will be discussing her Art of Oncology article; “Being On The Other Side: An Oncologist Perspective On Grieving”. At the time of this recording, our guest has no disclosures. Shannon, welcome to our podcast and thank you for joining us. Dr. Shannon MacDonald: Lidia, thank you so much for having me. It's a pleasure and privilege to be here today. Dr. Lidia Schapira: I'd love to start by having you tell us a little bit about what motivated you to write this essay that is so personal and so important, and to share it with the large community of oncologists. Dr. Shannon MacDonald: So, writing it was easy. I found it very cathartic to write about my experience. So, the act of writing it, I did over many years. I started it soon after Dan died, picked it up a couple of years later, and then put it away for a long time, and recently was motivated to pick it up and start writing again based on reading “Beautiful Boy”, which was one of the Art of Oncology pieces and also, based on another medical narrative that I wrote just before this one. And the decision to publish it and make it public was a little more challenging. Dan was a very private person. We spent many years being very private about his medical problems. He never wanted to be seen as having a disability or a medical issue. I think he was wise enough to know he'd be perceived differently, but I made a decision when I gave his eulogy to share some of his medical history and how brave I think he was during that time. And I think one of the reasons to publish it was to help others. I found reading very helpful when I went through this experience and I think helpful in my career as an oncologist, and reading people's stories, short stories, books, any type of reading about the human experience is helpful to try sort of put yourself in those shoes and try to understand what it feels like. And I was also motivated by giving a few talks or joining others to give talks on grief during the pandemic and speaking about my experience and was told by colleagues a long time ago,’ we just want to know how it feels’. And when I gave these talks, I think residents in particular, but also, colleagues of any age were very grateful for the sharing of my experience. And it made me feel sharing this was meaningful. Dr. Lidia Schapira: And when you talk about how it feels, the sentiment I took away from reading the essay, and I've read it many times, is how raw that felt. And your wisdom in saying that you had lived as a professional in a culture that's immersed in grief, and you were exposed to suffering, and the suffering of children even, every day in your professional life, and yet you were unprepared. Can you talk a little bit about what you felt helped you to learn to accept and move on or live with Dan's absence? Dr. Shannon MacDonald: Yeah, so I think what you said about being totally unprepared and what I said in my essay was completely true. I guess, I thought somehow that seeing patients suffer, seeing them lose loved ones, seeing parents lose children would have somehow made me more prepared, but it did not at all, I was completely caught off-guard. And I remember calling a colleague who was also 40 and she lost her husband suddenly, about three months after I lost Dan. And one of the first things she cried out when I called her is, “I can't believe I had no idea what this felt like.” And I think that that resonated with me, I felt exactly the same way, and that's what I answered back to her. And as much as we live it and see it every day, it's so different being on the other side of it. I think we see the illness, the sadness, and you think of it for moments. You can't think of it every moment of every day. And I remember hearing people say that person that I lost is in my mind every moment of every day, and I couldn't understand that, but it's true. Somehow, it's constantly there. Even though Dan was gone, he was constantly there, and to do anything meant sort of pushing him out of my mind in order to do another task. And that part is the part that I think is unimaginable. And why would you want to imagine that, and how could anyone? And that is the part that we don't see. And I think as oncologists, we see our patients through a tremendous amount of suffering. We see them at the time of death of a loved one, and then we see them shortly after, but we don't always see them in the weeks, months, years after that loss. So, it was that part that was so unknown to me until that happened. And I think you do what you can to get through it. It's not easy, it's messy, and it's hard. And I can't say that I could give someone advice on how to get through it in a better way. I think you just have to go through it. And that was yeah, the experience I learned from my loss. Dr. Lidia Schapira: So, you say that it's messy and complicated, and in your essay, you reflect also on the reaction that you had or the way that your colleagues responded to this catastrophe that took you by surprise. It was not as if Dan had a chronic illness and was approaching the end, this was totally unexpected despite the fact that he did have an illness. And you talk about the silence of your colleagues as a wound. At least that's the way I interpret it. Can you talk a little bit about that? Dr. Shannon MacDonald: Yeah, and it's silence of colleagues and also friends. But I think for me anyway, I can only speak about my personal experience — that was the hardest because it created this awkwardness that was hard to get past. So, in my opinion, it's better to say anything or write something if you can't say something. But also, I also have learned, and I understand that it's just so hard and people are so afraid of saying the wrong thing that it's natural to avoid it or to try to say something, and then be too nervous to say something. But I guess, my advice would be to try to write or say something rather than saying nothing because it's so awkward when nothing is said, and it creates an additional stress on that person that's grieving, and sometimes, a sad loss of a relationship for a time or forever. Dr. Lidia Schapira: Sounds like you have used your experience to now, talk about and write about your personal grief, and you're seen perhaps, as a resource for others or a teacher. What does that feel like? Dr. Shannon MacDonald: It feels good. I'd like to be that as much as I can be. Again, it's only my personal experience. I've received feedback that it's helpful, but I'm sure I wouldn't receive feedback that it was unhelpful or negative feedback. But I think that makes me feel like there's some meaning to the writing and the work that I've done, in speaking to others. And I think there's a lot of oncologists, maybe particularly those new to training that are eager for more teaching in the human experience of what we see every day. They certainly want to learn the trade and the skills, and they can find that in textbooks and in our teaching, but the humanistic part of it is more difficult to learn. So, it's been very rewarding to have colleagues and residents tell me that it felt great to be able to ask in a comfortable setting how it feels to have someone die, so that they can understand better how their patients feel. Dr. Lidia Schapira: Can you reflect a little and share with us some of the sort of milestones in your sort of recalibrating and being able to find joy, and then find a relationship and transform your experience into part of who you are and carry with you, but in a way sort of embrace this new place in your life? Dr. Shannon MacDonald: So, I'd say a lot of steps forward and steps back. And if anyone had told me I would be as happy as I am again, now, right after Dan died or within the first year after he died, I would've said no way, that's never going to happen. I'd say in the initial time of his death and months after his death, I had no desire to ever date or be with anyone again. As I mentioned in my essay, it was easier to live in the past than to think about the present in an identity that was no longer what I knew was my... /episode/index/show/aoopodcast/id/24605745

Cancer Stories: The Art of Oncology

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