Cancer Stories: The Art of Oncology

Dr. Erica Kaye, Director of Research at St. Jude's, discusses the importance of narrative in oncology. She shares a powerful story of a mother's denial of her baby's prognosis, highlighting the need for empathy and understanding in patient care. The podcast explores how storytelling can shape healthcare policies, improve communication, and empower both patients and healthcare professionals.

A young patient's fictional poem 'Etch a Sketch' explores the moment of tragedy when a leukemia diagnosis is delivered. Dr. Wendy Tong shares her journey of using poetry to capture human moments in patient encounters. The podcast delves into the emotional impact of receiving bad news and the therapeutic benefits of writing poetry to cope with a cancer diagnosis.

Listen to ASCO's Journal of Clinical Oncology essay, "The Heritability of Cancer" 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: The Heritability of Cancer, 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 grieving right now." Sometimes it's just being with. And I think that certainly in North America, we're not very good at integrating grief, loss, pain, suffering, and negative emotions into our day to day lives. So partly, 10 years, 20 years, or 25 years later, it's hard for people to remember that loss. So I think the person is grieving that many years after may have to reach out and ask for the support. But I think it's done really well in certain religions. I am Jewish and in the Jewish background, you have so many layers of mourning that's lifelong. So you have the acute grieving experience where it's seven days or 30 days or one year. And then every year progressively after that four times a year, you say a blessing and remembrance and give charity in the name of the dead. And for religious people, I'm not religious, this idea of every single day for that first year having to go synagogue and having to have at least nine other people that could be there with you to say the prayer for the dead, whether you believe or not believe, whether you're religious or not, I think the brilliance in those kinds of rituals is that it simply brings you together with other people who see you everyday. And decades later, still that four times a year that you're meeting with people and you're saying a prayer, or that yearly yahrzeit, that memorial allows people a very very defined space in which to support the mourner. And I think other religions have it too. Dr. Lidia Schapira: Those are beautiful thoughts, and I think it speaks to connection and community as a way of supporting rather than pathologizing the grief and thinking what one needs is some sort of a professional intervention. I can't help but add that as a community of caring oncologists, we are constantly grieving. We are immersed in grief, and in part, there is no label for how we feel. There is a small literature that you probably know far better than I do on disenfranchised grief, which is the idea that we can't quite claim to grieve because we weren't a relative or best friend, but we deeply cared and we lost and we grieve. So I find that this conversation is so helpful because I think what we're doing is we're talking about what we ought to be talking about more: perhaps acknowledging more from a point of view, as you say, of a parent, researcher, caregiver, medical or healthcare professional who's involved. We are living in a society where perhaps we are afraid to think that grief is a part of our life, and we can be happy even if we grieve. Dr. Leeat Granek: Yeah. Dr. Lidia Schapira: Happiness is not just the absence of sadness, I think, I don't know. You are the psycho-oncologist, tell me if I'm wrong. Dr. Leeat Granek: I so appreciate what you're saying and it makes me sad to hear that grief is still so stigmatized among oncologists. I think what my research has found and all my conversations with people over the decades now is, of course, oncologists feel a lot of things. Not just grief but pain and suffering, distress at seeing their patients and their families suffering and declining. Why wouldn't they? They are human beings. So I think this idea that people don't feel or don't have space to feel is part of what leads to burn out actually. I think there's a kind of fear that grief and the pain and suffering is the burn out but it's not. In fact, what's the burn out is the inability to talk about or to have a space to discuss it. And I also think that the thing that gives meaning to the work is that relationship with patients. And by the way, I'm finding that with the surgeons as well. The surgeons are even more kind of disconnected in terms of emotions. We kind of assume that they feel nothing, that they are so disconnected. By the way, I just have to say, the surgeons say, "I can't believe the oncologists does that job." They find it really hard to believe that oncologists can do that, that they can never do that job. And the oncologists say that about the surgeons, too. So I think it's very interesting how different medical groups look at each other. But there's this kind of sense that's very unique about the grieving experience of how care providers is and they feel a lot of guilt and a lot of self doubt, and self criticism when patients die even though they know consciously that there's nothing that they could've done and that is just the disease that is taking over. That lack of control and that sense of having failed the patient is so strong. That is a very unique grieving experience for providers who feel responsible for the care of their patients. The fact that there is no training or no education or no space to talk about that is just appalling to me as a psychologist. Because I just think you learn how to do everything else. There's so much training on communicating bad news, on dealing with patient anger, on dealing with patient emotions and how to respond. But nothing on how to deal with your own emotions in response to this. For years, it's just about communications training. One of the things we find in the literature is that even when you provide communication training to oncologists that have to discuss end of life, often those skills are not sufficient to be able to have that conversation. And what's missing is the notion that I found in my own research that they don't have this conversation because they feel so uncomfortable with it themselves. And so until they have some self reflective practice for healthcare providers, all the skills training in the world is not going to help because it's about your own emotional resistance. Dr. Lidia Schapira: Well, this has been a phenomenal conversation, and I hope people will look at some of the beautiful research you've done in this field. Thank you so much for having shared your own experience, for the work you do, and for participating in today's podcast. Dr. Leeat Granek: Thank you so much. I really enjoyed it. Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and 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, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. New York Times Op-Ed: When Doctors Give Two Decades of Art of Oncology Guest Bio: Dr. Leeat Granek is an Associate Professor at York University in Toronto, Canada, in the School of Social Policy and Health Management.

Dr. Fumiko Chino of Memorial Sloan Kettering Cancer Center shares how her unexpected adoption of a cat named Franklin provided comfort during her husband's battle with cancer. The speaker discusses the impact of pets in providing emotional support to patients and reflects on the role of art in oncology. The passing of Franklin highlights the need for improved cancer care and the connection between pets and patients in difficult times.

Listen to ASCO's Journal of Clinical Oncology essay, "Gosses and the Dalmatian Puppy" 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: Gosses and the Dalmatian Puppy, 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 come within half an hour, I would have said, "Well, I'll come back after my clinic in the afternoon and let's have a chat with your son." But the situation was such that I thought, "Well, you just have to be practical and you have to get back to your clinic." It's a hard feeling that we make value decisions just because it's more comfortable for us. We want to finish our clinic and also go – Dr. Lidia Schapira: No question about that. Yes, and I think the reader will feel for you, as I did when I read it. I mean, I could immediately sort of imagine all these things playing out. So you follow your intuition, you assess it, you say, "Okay. We'll give it a try," right? And then you have your team to deal with and your lovely radiation therapist, the technologist who gets personally involved. And then you introduce the idea that perhaps connecting with something in Vladimir's recent past that brings him joy. Can this image of this puppy romping through the fields, is something that can maybe help you all? Like the glue, the emotional glue that keeps you together. Talk a little bit about that part, about how you tried to bring this element out in the story, to give another dimension for the reader, a view not only as the physician giving Vladimir care, but also leading your team. Dr. Zvi Symon: So I think that an open question to a patient about their– "Just tell me a little bit about yourself," is an invitation for a person to tell you about the things that they care most about, about the people they love most, that the things were of the most importance in their lives. And I think that kind of human connection, if we can kind of latch onto that and harness that to improve the way we communicate with the patient and the way we get the rest of the team to communicate with the patient, I think that can be very powerful. I mean, I myself love dogs, and I was like, really, my Border Collie just died a few months ago, and we buried her after 12 years, and she was a wonderful animal and part of the family. And in the two minutes that I had to listen to- that's what she told me about, she told me about the dog. And when I tried to motivate the team to add him as an urgent sim and he wasn't cooperating, then it just occurred to me to tell them about it. Dr. Lidia Schapira: It worked. It was amazing. Dr. Zvi Symon: And it worked. Yeah. Dr. Lidia Schapira: It was a beautiful story. I too, am a lover of dogs. I have a wonderful puppy now, and he brings tremendous joy. But your message is so full of compassion and humanity. It's basically back to Dame Cicely Saunders' idea that you want to know who the person is that you're treating and you want to know what matters to them. And so here you caught this moment of connection with the family and with the patient and with your young radiation therapist who needed to feel that he was actually helping this person. So it's a beautiful story. I want to just give you a chance to finish the interview by telling us something perhaps that you want the readers or the listeners to take away from your piece. Dr. Zvi Symon: Well, I think that the situation of, I think as physicians, we don't really ever know when the patient precisely is going to die. And the whole idea, I think, of a Gosses and my thoughts about the Gosses were, because it's sort of defined within Jewish religious law, someone that is going to die within 72 hours. Now, it's very difficult to define. We don't know that. We never do know that. But I think that that sensitivity to the comfort of a suffering patient and offering a treatment that may be futile or that is highly likely to be futile and that may be involved in an enormous amount of discomfort, I think that we have to be able to sit down with these patients and with their families and discuss other options as just very good sedation and not necessarily, I think, doing, but rather just being there, as you mentioned, for the patient. Dr. Lidia Schapira: It's a beautiful thought, and I think we all agree with you. And I think what made this story so poignant is that here you are, that time is compressed and you're introduced to the family as somebody who potentially could help fix something or provide something. So it's very difficult to step back, as you say, and do the deep work of sitting and talking and counseling and accompanying. But I think your humanity comes through and your desire to help comes through beautifully in the story. And I really thank you for bringing this concept to our attention. I think that it may be an old idea, but one that is still very relevant. And thank you for sending your work to JCO. Dr. Zvi Symon: Thank you very much. Dr. Lidia Schapira: 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 to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Zvi Symon is a 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.

Listen to ASCO's Journal of Clinical Oncology essay, "The Gift of Truth" 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 car with them, but you can remember it, think about it, choose your words carefully, maybe have a word with the spouse or the family member, whoever it is, as they're leaving outside the door, "If you need anything, call me." Maybe call them. Sometimes, I've seen that it's difficult, and I've called them the next day. That definitely has influenced me. I'm not sure there's a lot you can do about it, but I think about it. In terms of telling patients that time is limited, that you're not going to live forever, it's hard, and we want to give patients good news. It's so much easier to tell a patient that their PET CT is clear than that it's all come back and the prognosis is not good. So I try to understand where the patient is and how much they want to go. Most patients will lead the conversation. Most patients know to tell you how far they want you to go. And I've never been sorry about telling the patient that their prognosis is bad and that their disease is terminal. And I've had lots of return conversations from families after patients have passed on about the conversations they had, about the things that they did, about the fact that the patient decided maybe not to have more intensive treatment, went on a holiday, decided not to come to the emergency room with a fever or whatever it was, and elected to stay at home with hospice. I found that that side of oncology is no less rewarding when you have to accompany a patient on their lost journey. I've found over the years that it's actually no less rewarding than the patients who are cured. And then you see them once a year and they come and they say everything's good. Dr. Lidia Schapira: And that perhaps is part of what we call the art of oncology, which is the being in relationship, connecting with somebody, being a rock or a source of guidance for them when they're going through incredibly vulnerable times. I think that's not something that perhaps others recognize as being rewarding, but for those of us who are drawn to it, it can be incredibly rewarding. Thank you, Ilana. This is a beautiful conversation and such a lovely essay. I imagine there's a reason for this taking about ten years to process and write, because the impact is so deep, but you managed to do that. For that, all of the readers of JCO are grateful to you. So I thank you very much. Dr. Ilana Hellmann: Thank you. Thank you for taking it and publishing it. Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center in Israel.

In this podcast, Dr. Kristen McCullough, Hematology Clinical Pharmacy Specialist at Mayo Clinic, shares a pharmacist's perspective on patient loss and the challenges faced in healthcare. The podcast explores emotional conversations about resuming therapy, the role of pharmacists in patient care, and the importance of recognizing their expertise and emotional labor in the multidisciplinary cancer team.

Listen to ASCO's Journal of Clinical Oncology essay, "Buenos Días: A Letter to My Patient's Mother," 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 the world, honestly, little paragraphs here and there. Dr. Lidia Schapira: That's so interesting. Assuming, maybe reading into this, that telling the story, writing the story, helped you process something that was very personal, very challenging. Can we talk a little bit about this issue of language? You said that you've seen this look of relief on patients' faces when they realize that you speak Spanish and that you can communicate with them, Spanish in this case being the language that binds you to the patient. Tell us a little bit about that, how you view language and speaking the same language as your patient and their family. Dr. Jenny Ruiz: Yeah, I think we often take for granted that we're able to communicate with our doctors, our medical team, in our primary language. And it's very easy to overlook that there's a lot of immigrants in this country who don't have that luxury of being able to speak to their medical team in their preferred language. So I think one of the main drivers for me to go into medicine is to be able to connect with these families who speak Spanish, knowing that Spanish is my first language, and be able to really communicate in a plain language and explain it to them in a way that they understand and for it to be much easier to then see if they truly understand and check for understanding. I think in pediatric oncology especially, it's a very stressful time to be told that your child might have cancer and to be able to have that conversation in your preferred language, I think takes a lot of that stress away. Dr. Lidia Schapira: You talk about the fact that patients often feel relief and that it's easier to build rapport and trust, but I think there is something else that perhaps I read into or I wanted to read into it, which was warmth. I think that it's easier to convey that warmth or to understand each other a little bit better when there's concordance in language. So do you find yourself being assigned more of the Spanish speaking families as a result of your ability to communicate? Dr. Jenny Ruiz: I didn't really get that sense in fellowship. I mean, I think at one point they were asking for a volunteer from the fellows who needed to pick up another patient, and it just happened that the family spoke Spanish. I was like, "Of course!" I have found it very interesting in fellowship when I would be on call for some reason, every time or quite a few times that I was on call, it'd be a Spanish speaking family in the ED. And I loved going to talk to them. I might not be giving the best news to them, but the fact that somehow our timelines aligned and they would be in the ED, and I would be on call, and I would be that first physician to kind of talk about cancer with them. Dr. Lidia Schapira: That's such a beautiful sentiment that you express there. And I wonder if you can tell us or teach us a little bit about how you feel when you work with an interpreter for a language or a culture that you don't understand. Just something that happens to all of us in a society that hopefully welcomes immigrant families. Dr. Jenny Ruiz: Yeah, I mean, I think there's definitely a lot of skills to be taught in how to work with an interpreter. Again, using simple short sentences, positioning yourself as you are talking to the family, there's not going to be this three-way thing, trying to make that connection as much as possible. I think also noticing the unspoken words and the subtleties of the parent's face, the mom or the dad is very important, even with an interpreter, be like, oh, I noticed this. Is there something that you want to discuss more that made you do this? Dr. Lidia Schapira: And even using an opportunity to debrief with interpreters to make sure that we got it right. In your case in pediatric oncology, I think communication is even more complicated because you have the parent and the child and the interpreter. So tell us a little bit about your experience working with families where kids maybe speak English much better than the parents. You still need to communicate with the parents. I think that adds more challenges. Dr. Jenny Ruiz: Last year when I was a first year attending, I actually prepped a fellow with a talk with a Spanish speaking family with an interpreter. But the teenager's English was his primary language, so yes, he knew Spanish too, and the family wanted him to be involved in this discussion. So definitely a lot of more nuances there, a lot more emotions to be aware of, subtleties to be aware of, nonverbal communication that's happening. But I think honestly, we rely a lot on the parents to guide us in terms of: Do we want the child to be involved? How much information? Do we want to then say it differently for them at a later time or include them from the beginning? It's a lot of talking to the family and making sure that we are meeting their needs. Dr. Lidia Schapira: So what I'm picking up from our conversation is that you seem to be very tuned into the emotional part of the work. Let me ask this question, and that is: How do you take care of your emotions in these situations where there's so much at stake? Dr. Jenny Ruiz: Yeah, I mean, I think it definitely can be a very emotional career and certain instances can make it even more emotional and stressful. For me, it's been very important to have a very strong support system. I have my husband, I have my extended friends who are in the Northeast, have become another family for me. And I think, honestly, you know, prioritizing your mental health, whether that's doing your hobbies, whether that's going to therapy, have all been very important for me in this career. Dr. Lidia Schapira: I am delighted to hear you say that you are taking time for yourself and looking for things outside of work. That said, let me turn back to the relationship you developed that you describe here with Gabriela, the mother of your patient to whom the letter is addressed. You talk a lot about feeling strongly when you felt there were injustices or when they didn't have the proper access. Tell us a little bit about what that relationship was like and what it's been like for you when you find yourself advocating for families. Dr. Jenny Ruiz: Yeah, I think these strong feelings stem from seeing my family go through these same struggles and wanting the medical system to do better for immigrant families so they can have the best outcomes. I think oftentimes I find myself realizing I'm getting emotional or worked up and be like, okay, there's something going on here. I need to step back before I start talking to someone else about this, of what I want to happen or what I need to advocate for and really knowing that people will respond better if I stay calm and also kind of push back and in a professional way, ask questions, like, why is this happening? And if this is not our standard, why are we deviating from our standards? Dr. Lidia Schapira: So I know this is an early moment in your career. I mean, you're an assistant professor and just in the second year of a new job. But how do you imagine that this interest and this advocacy that you're so good at and feel so strongly about is going to impact your career going forward? Dr. Jenny Ruiz: I hope to continue to be a role model for trainees and faculty as I progress in my career, maybe I'll take on some leadership roles within the med school education system. Dr. Lidia Schapira: As you imagine yourself teaching, leading, and modeling behaviors, what are the most important messages that you'd like to convey to your students or peers? Dr. Jenny Ruiz: In pediatrics, at least ask the parents. Ask the family what language do they want to be communicated in for the medical information of their child? And then if it's not a language that you have been certified in to speak in, or are a fluent language native speaker, then get that interpreter. And then again the plain language and the short sentences. Dr. Lidia Schapira: So the health literacy and language preference for you are sort of intertwined, so to speak. So I'm curious, does your institution routinely collect that information, and do you ask every patient their language preference? Dr. Jenny Ruiz: I think there's definitely lots of room for improvement on how that information is being collected. I don't think it's being done in a systematic way. And hospitals are so large, everyone's doing it in different ways. When I was a fellow, I would be called from the emergency, say for cancer. I would always ask the emergency team, "Do they speak English, or am I going to need an interpreter for this?" And it's sad to say, to share that at one point they told me that the family spoke English and it went down there and then they're like, actually, no, English is not the primary language of them all. But we haven't been using an interpreter and I'm like, what is going on? Dr. Lidia Schapira: Yeah, I think that unfortunately, we've all been witnesses to such moments and it's sort of time for our culture to get this right. As we get towards the end of this lovely chat, let me ask if you've shared some of this with your family and how your role, perhaps as the early interpreter for your grandfather has evolved over these years in terms of your being at this position of being an expert now in medicine and perhaps a facilitator. Dr. Jenny Ruiz: Yeah, I definitely have taken on a role with my siblings and my cousins, kind of telling them the things I see in medicine and telling them why it's important to go to your annual checkup to get those screening tests because too often we see too many people just die too early, when it could have been prevented or a medication could have started early. So I think I've definitely taken on that role within my extended family. I hope that they kind of trust me and that little trust can then slowly build into a trust with their own medical team. Dr. Lidia Schapira: And if I may just dig a little bit more into this story, my last question is what did it feel like to go to the funeral for your patient's dad? Dr. Jenny Ruiz: I never thought that I would be going to a funeral for a parent. I thought I was going to be going for the child with the field that I had chosen. So it was definitely unusual. I had a couple of family members also pass away during my fellowship years, so it was a lot of reflection of the things that my family went through, things I saw with this family, a lot of similarities. So it's definitely been a very unique story that I felt like I needed to get down on a paper and share because oftentimes we don't hear these stories. Dr. Lidia Schapira: It was definitely a message that needed to come out. And we are so grateful to you for writing it, as you say, in little snippets in different times of your life from different locations. Thank you for that and thank you very much for agreeing to chat with me today. Dr. Jenny Ruiz: Thank you. Dr. Lidia Schapira: And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Jenny Ruiz is an Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine.

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: Playing by Eye: Using Music as a Parallel to Clinical Oncology, 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 bringing this forward and putting this in front of the global community of oncologists, what can music give us? Dr. Beatrice Preti: Yes. Well, I think music and writing and words, which are a form of music in a way, they can help us remember, I think, the most important thing about Oncology, which is the human aspect of it. We're dealing with people who are frustrated, scared, alone, lost, in some of the darkest points in their lives. And it's a privilege to be able to serve and help these people through their journeys, but that's not always with drugs and treatments. Sometimes that's just with what we do or what we say, and that's a gift. But it's also a skill that needs to be developed and remembered. And having music is one of the things I think that helps me do that. Dr. Lidia Schapira: That's absolutely beautiful. So thank you very much for the work you do and for sending us your essay. And to our listeners, until next time, thank you for listening to JCO Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Beatrice Preti is an Adjunct Professor at Western University in London, Ontario, in Canada.

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: When the Future Is Not Now, by Janet Retseck, MD, PhD 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 treat tuberculosis anymore. Dr. Lidia Schapira: So when my son was very little and he heard me very optimistically also talk about new treatments and so on, he said to me, "Mummy, the day that there's no more cancer, what are you going to do?" If somebody asked you the same question? What do you imagine yourself doing other than being an oncologist? Dr. Janet Retseck: Well, I guess I would go back to being an English professor. Dr. Lidia Schapira: Tell us more about that. Dr. Janet Retseck: Now, I have let the cat out of the bag. So that little Ph.D. next to my name, I've decided to embrace that - that is in English. And as many people may know, the job market in English is not fantastic. And I've always had a bent toward science and medicine. And when I discovered that it was possible to go back and get my sciences, in part through sheer memorization, I decided to do that. Because what better way to spend ten years of my life than learning how to be a physician? Dr. Lidia Schapira: So in the last minute of the podcast, tell us a little bit about your Ph.D. What is your area of interest, and have you taught? Are you planning to go back to teaching or are you currently teaching? Dr. Janet Retseck: My Ph.D. is more or less in Victorian novel and interpretation, and I taught for 16 or 17 years, mostly community college, some at the Claremont Colleges, mostly composition, and I am teaching right now. This is what I love, being at the Medical College of Wisconsin. It is like I hit a home run coming here because they have a very strong medical humanities program. And when I arrived here, I was directly pointed to the directors of the medical humanities, "Look, here's a Ph.D. in English!" And I thought, "You mean I can do something with this here in medicine?" And so I connected with Bruce Campbell and Art Derse, who were instrumental in bringing narrative medicine to the Medical College of Wisconsin. So I'll be teaching a class of that in narrative medicine in the spring, and I do everything I can to teach the medical students and residents and fellows here at the Medical College of Wisconsin as a VA. Dr. Lidia Schapira: Well, that was quite a surprise for me. I didn't know that. I knew, reading your essay, that it was beautifully written. Thank you. I was going to ask what your Ph.D. was in, expecting you to tell me something about some branch of science I know nothing about. But this came as a surprise. So I am so glad that you're doing what you're doing. I'm sure your patients and your future students really appreciate it and will appreciate it. So thank you so much, Janet. And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of 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, experiences, and conclusions; guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Janet Retseck is an Assistant Professor of Medicine at the Medical College of Wisconsin.