Cancer Stories: The Art of Oncology

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

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

Listen to ASCO's Journal of Clinical Oncology essay, "It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss" by Dr. Margaret Cupit-Link, who will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, MO. The essay is followed by an interview with Cupit-Link and host Dr. Lidia Schapira. Dr Cupit-Link shares her personal experience with childhood cancer and the importance of educating patients on the known and unknown consequences of their therapies so they can, when possible, participate in fertility preservation. TRANSCRIPT Narrator: It Mattered Later: A Patient-Turned-Doctor's Perspective on Fertility Loss, by Margaret Cupit-Link, MD I was 19 years old when I had to make one of the most important decisions of my life. The problem was, at 19 years, it was not important to me—yet. With piercing clarity, I recall the very first time I heard the word sarcoma. My leg had been hurting, and I had just undergone magnetic resonance imaging. The doctor spoke of abnormal tissue. As a pre-med student, I blurted out the words, "it's cancer, isn't it," and waited for him to reassure me. He did not—he could not—reassure me. The days and weeks that followed are still a blur. There was more diagnostic imaging, a biopsy of my tibia, and placement of a subcutaneous port in my chest. When we learned that the Ewing sarcoma growing in my leg was not metastatic, my family celebrated; meanwhile, I struggled to eat, sleep, and breathe, unable to accept the reality that I was no longer a healthy college student. I was a patient with cancer. Before my chemotherapy would begin, my mom and I had to give legal consent. Technically, I had to give consent—as if I would choose to say, "no thanks," to the only treatment that could give me a fighting chance to keep living. With each potential side effect that was mentioned, I felt a piece of my morale slip away. Was I going to die? Maybe. Regardless, I would lose my hair, my appetite, my immune system, and my independence. Should I be lucky enough to live through it, I would be susceptible to a host of late effects from chemotherapy, one of which was infertility. Infertility, I felt, was the least of my worries; it paled in comparison with heart failure, secondary malignancies, and death. As a 19-year-old, I did not want children. My career goals were my priority, and I had yet to be in a serious romantic relationship. Starting a family was not on my agenda. So, on the worst day of my life, when all I cared about was staying alive, I was told I could choose to undergo ovarian stimulation to harvest follicles in a somewhat experimental process that would delay the start of my chemotherapy by several weeks. Without hesitation, I said no. At the time, I did not realize I was lucky to have had time for such a conversation. My diagnosis and presentation allowed for a small delay before treatment; I would later learn that many patients do not get that luxury. A little over a year after completing therapy and returning to college, I developed hot flashes, night sweats, and mood swings. On the basis of the levels of luteinizing hormone, follicular stimulating hormone, and anti-Mullerian hormone in my blood and an ultrasound showing ovaries without follicles, I was diagnosed with premature ovarian insufficiency and told it was unlikely my ovaries would recover. I was not heartbroken or even disappointed; I was still so thankful to be alive. I did worry, however, what this would mean for my boyfriend, the person I wanted to marry. To this day I am amazed that he, as a 20-year-old man, was completely accepting of me and my infertility and that never changed, even after he became my husband. Near the end of my pediatrics residency, I came to understand the term baby fever. My coresidents were getting pregnant, my sister was having a baby, and my husband and I were settled down in our very first home. I visited a reproductive endocrinologist. It had been 9 years since I had completed chemotherapy, and I learned my ovaries were not functioning at all. I was told to plan on adoption—of an embryo or a baby—as I was not a good candidate for fertility treatments. At first, I did not allow myself to react to this news. How could I mourn something like fertility when I was a 10-year survivor of childhood cancer, had exceeded my career goals, and was married to a wonderful person? Most of the time, and on the outside, I was unphased. I spoke about my desire to adopt with enthusiasm. I was honest about my ovarian failure and made jokes about being in menopause. I celebrated my friends' pregnancies and came to love my nephew as if he were my own. I considered the many ways in which I could become a parent, each with its own barriers. Because I had not undergone oocyte or embryo cryopreservation before chemotherapy, having a genetic child was simply not an option for me. I could adopt a baby in need through the foster care system, which would not require monetary payment. However, I knew then and now that the goal of the foster care system is to eventually reunite children with their families; although I was strong, I could not risk falling in love with a child and losing them to reunification. Private adoption was another option. While it felt unethical to pay a large sum of money in exchange for someone else's baby, I would one day have the luxury of being able afford the price tag (at least $20K US dollars [USD] to $100K USD in the United States, depending on the state and organization). Then, there were the options offered by modern medicine—embryo adoption or in vitro fertilization using a donated oocyte and my husband's sperm. In these cases, even if my body was unable to sustain an embryo, I could use a gestational carrier (surrogate mother). While I knew that having a baby the old-fashioned way was not without its own costs and risks, it was undoubtedly easier than any of my options. I did not admit—until now—that it hurt to know I would never experience the miracle of pregnancy. It hurt to know that I would never have a child that was half of me and half of my husband. It hurt to know that, even now, my cancer had taken something from me that I could never get back. My experience with infertility has made me thoughtful about how infertility may affect my patients. As a pediatric oncologist, I am painfully aware that many of my patients who lose their fertility from the drugs I prescribe them will travel the same road of grief I have traveled. I am even more aware, however, that most of my teenage patients are not ready to make decisions about fertility—even when they are forced to do so. In my desire to counsel my patients on this topic, I have tried to imagine a scenario in which the advice of a doctor might have prompted me to prioritize fertility preservation. Perhaps I should have been told that delaying cancer-directed therapy by several weeks would be unlikely to affect my disease outcome. Perhaps I would have benefitted from knowing the complexities of the foster care and private adoption systems. Perhaps fertility preservation should not have been a choice at all, but a standard of care, as it is now.1 What I think I needed to hear, above all, was that I did not understand the gravity of my decision. I did not and could not understand the desire to become a parent that would one day overcome me. If I could go back in time and speak to my 19-year-old self, I would say, "it might not matter to you now, but it will matter to you later." Just days before I originally planned to submit this article, after 12 years of menopause, I experienced the unexpected. Seven positive urine pregnancy tests later, my doctor sent me for an urgent ultrasound, and it was confirmed: I was 6 weeks pregnant. At first, I felt I was no longer worthy of writing this article: how could I speak up about infertility from cancer therapy after having miraculously conceived a child? However, I eventually realized my pregnancy was yet another reason I should write on this topic. Only now, as I hold my daughter in my arms, do I fully understand how much my fertility would come to matter to me. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Maggie Cupit-Link, a third year Pediatric Hematology Oncology Fellow at St. Jude Children's Research Hospital, Maggie will graduate from fellowship and receive her Master's in Clinical Investigations in June. She will then begin a position as a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri. In this episode, we'll be discussing her Art of Oncology article, "It Mattered Later: A Patient Turned Doctor's Perspective on Fertility Loss." Our guest disclosures will be linked in the transcript. Maggie, welcome to our podcast and thank you for joining us. Dr. Maggie Cupit-Link: Thank you so much for having me. It's an honor to be here. Dr. Lidia Schapira: It's lovely to have you. I'd love to start just by asking a little bit about your motivation to write and share this piece. It's such an important piece and you really have shown us what was deep in your heart. And then there's this sort of unexpected resolution. Tell us a little bit about what led you to finally finish the piece and share it with the world. Dr. Maggie Cupit-Link: So I've been writing for a lot of my life as a way to express myself and cope with emotions. And I had cancer when I was 19 and 20, Ewing sarcoma. And during my treatment, I found writing was very therapeutic for me and very healing. So that's when I got really into writing about my personal experience and actually published a book after I finished treatment. But then writing more recently, I was writing about my infertility, which I had from chemotherapy. And I would write about it and journal about it here and there because it was really challenging. And for a long time, I suppressed a lot of those emotions because I didn't think they were helpful. And I felt, I guess, ashamed and embarrassed to feel so upset about infertility as a cancer survivor who has so much in life. So many parts of my life are so normal and full and even more full than the average person so I felt like I wasn't really allowed to grieve my fertility. And I started to write a piece because I'm part of a working group, a group of physicians working together to learn more about fertility and pediatric cancer survivors, particularly those who have received immunotherapy, because there are a lot of new agents that we don't know as much about when it comes to fertility. And as I was working with this group, I started writing this piece on my own. And then I was about to submit the piece just to the group to show them my personal reflection when I took a pregnancy test and it was positive. So then I took seven– Dr. Lidia Schapira: -other ones Dr. Maggie Cupit-Link: I was not, I didn't believe any of them. Then finally I called my sister, and she told me that I was not acting like a doctor, that it was very obvious I was pregnant. And so then I went to see my doctor, but I found out I was six weeks pregnant right at the time of finishing this piece. And at first I thought, "Well, I can't write this piece anymore." But the more I thought about it, the more I thought, "Well, either way, it shows that us oncologists really need to learn more about fertility." And I'm very blessed and lucky to have this ending in my story, but it shows that there's a lot of missing information out there. Dr. Lidia Schapira: That was an amazing answer, and I have about five different topics now that I want to discuss with you. But let's start with the end. And that is your baby. How old is your baby now? Dr. Maggie Cupit-Link: So her name is Lila Jude. Two days from now, she'll be seven months on June 12. Her name comes from the family name Carlisle. That's where we got Lila. And then Jude comes from the Patron Saint of Hopeless Causes, St. Jude, but also the hospital that treated me and where I've trained, St. Jude Children's Hospital. So that name was very significant for us. Dr. Lidia Schapira: So I'm getting goosebumps and teary just to hear you tell the story. Let's start a little bit with some of the themes that you touched on. The first is when you've said that you've always used writing as a way of processing emotionally complex situations as a patient, now, perhaps as an oncologist. Tell us a little bit about the book that you wrote about your experience. Dr. Maggie Cupit-Link: Sure. When I was in treatment, I wrote a lot of entries in my journal, and it was just a way for me to process things. I think sometimes, for me, I don't know exactly what I feel until I write it down and make myself reflect on it, because I'm a busy body. I'm constantly going and doing. And so during chemo, I couldn't really do it. I had a lot of time to sit, and so I needed to write. And my grandfather is a retired Professor of Christian Philosophy. And during my year of cancer therapy, he and I started writing letters to each other because I had a lot of questions, understandably, about God. So the title of the book is actually "Why God?: Suffering Through Cancer into Faith." And it's a lot about doubt and my anger towards God and what I would see in the hospital around me, the children who were dying from cancer, who even had it worse than me. It felt very impactful to my faith. But ultimately, through my conversations with my grandfather, he taught me a lot about another way to understand God, another way to understand faith in spite of horrible suffering, which I think is a thing for a lot of people because a lot of people in this world suffer. And so eventually we published a book. During medical school we published it, and it was a compilation of my journal entries intersected with his letters. And so part of it was really personal and raw and journal entry, and part of it was Christian philosophy. So it was an interesting combination. Dr. Lidia Schapira: Well, Maggie, I will definitely now have to get your book and it'll be on my list for summer reading. So you touch on some of the fundamental, sort of ethical, moral principles of our profession, which is suffering and how we deal with suffering. And you've had a lot of time to reflect and philosophize and also experience this, as well as loss. Can you tell us a little bit about how your experience of loss has evolved over the decade of survivorship? Dr. Maggie Cupit-Link: I think initially, loss, for me, meant a lot of different things than it does now. I felt like I lost a lot when I was sick because I had to give up a year of college. I lost my tibia and knee bones. I have a prosthetic knee and tibia now, internal, and they function very well, but I don't have a real leg. I lost, of course, in chemo, you lose your hair. I lost a lot of tooth enamel. I lost a lot of friends because I was a teenager, and teenagers don't handle illness very well. People were afraid to talk to me. And then, of course, I lost my ovarian function. For a while, I think I focused on that a little bit more than what I had gained. But over time, it became very obvious to me that despite all the loss that I had during my year of cancer therapy, I gained a lot more. I gained a lot of perspective and a lot of emotional depth. And then ultimately, what directed me to my career decision. I knew I was wanting to be a doctor before I had cancer, but then after that year, I knew exactly what kind I would be if I got through the year. But I think one thing I've had to learn apart from that is being able to feel loss, even when you have so much. Because I have a lot of gratitude and I have so many good things in my life now with my health and my husband and now my baby and this wonderful career. Even though I have all those wonderful things, I'm still allowed to feel loss sometimes because I will be susceptible to late effects and there will be things in my life that are not quite normal because of going through cancer therapy. And then, of course, the other layer of loss is the people that we lose along the way. If you see behind me in my office, there's a picture of a little boy on the shelf up there. He was my good friend when I was sick. His name is Odie, and he died from hepatocellular carcinoma. When we were sick, he was a good bit younger than me. He was like a little brother to me during therapy. The loss of his life definitely propelled me forward to try to change more for other kids. And I think one thing I struggle with now as an oncologist and I'm still learning to do, is process the loss of my patients as it happens. I think I'm lucky that when I lose a patient, when a patient loses their life, I still see the beauty in what I was able to provide for them and their family. That's still a gift. I feel that it's important for me to grieve the loss of their lives, and I'm working on finding, like, the best way to do that for me over time. Dr. Lidia Schapira: You will find a lot of reflections on this topic in the pages of Art of Oncology over the last 20 plus years. I think that is a very, very common theme. I'm really impressed with how well you just understand the importance of this, to stay emotionally healthy and resilient. My next question addresses that a little bit, and it has to do with processing the early experience of being a cancer survivor. As a young medical student and as a young physician, what was that like for you? Dr. Maggie Cupit-Link: I think early on, I had a lot of guilt when it came to being a survivor. This concept of survivor guilt, I think you can read about it as well, and I'm sure there are some articles in the Art of Oncology about it. But the idea that, like, 'why me?' and when I encounter patients who go through similar diseases or experiences that won't have good outcomes, 'why? Why me? Why did I get a good outcome and they didn't?' And so early on, I struggled with that more. I felt guilty about it. I think over time, I recognized that the guilt– I mean, I always knew it was illogical. That doesn't mean we don't feel it. I think over time, I've recognized the guilt as unproductive. And so I tried to empathize with myself about it and acknowledge that I feel guilty. But then instead, what can I do with this feeling that's helpful? So where can I put this? What can I do to make things better for somebody with it? And I think that I've been able to do that better as time has gone along. I also think that early on in my survivorship, I thought that I had even more ability to understand patients' perspectives than I did. And I learned quickly that everybody's experience, even another 19-year-old with Ewing sarcoma who had to leave college, is so different. And so I've been humbled along the way in learning that just because I understand part of their experience does not mean I understand their experience all the way, and that I should never assume that I do. I should always listen and wait to try to understand more about what's different about their perspective. Dr. Lidia Schapira: I'm surprised a little and maybe delighted to hear the wisdom in your words. You are so young and yet you know so much. Did you have any mentors during medical school and residency who helped you process this? And then playing it forward, how do you imagine now that you're going to be an attending, mentoring others who may be the young Maggie and come under your tutelage? Dr. Maggie Cupit-Link: I've had a lot of mentors, for sure, in life. I've been in therapy pretty much my whole life. I'm really lucky that my grandmother is a PhD psychologist and she's a clinical counselor. And so from the time I was a child, if there was ever a problem, I would go see a therapist. There was no exception to that, especially when I became sick. And then in the aftermath of that, I've frequently been seeing a therapist, and that really helps me gain wisdom. I think that's been one big source of mentorship. But there have been other providers that have been big sources of mentorship for me for this. One was actually a good friend of mine. Her name is Beth. She's a physician, a clinical research physician scientist at St. Jude, and she was a fellow when I was a patient. And we became friends back then. And then when I went back to college afterwards and then medical school, I shadowed her a few times. I did an away rotation with her once at St. Jude while I was in medical school, and during that time, I remember meeting a boy with Ewing sarcoma. And I remember walking into the room thinking, "Oh, this is great. I totally get this. I'm going to be so helpful to his mom." And I quickly learned that he had metastatic disease, which meant, really, we had a different disease entirely. And that when I told his mother about me, I almost felt like it made things worse because she knew that my outcome was different than her son's was going to be. And I remember Beth afterwards reflecting with me, saying like, "Yeah, it is true. Everyone will have a different story, even if you understand a lot." I think she told me, "You don't always have to tell people your experience in order to use your experience." And so that was one of the ways that I learned. I don't have to share everything upfront in order to still have so much empathy and compassion. And then I've also had the honor to work with many doctors who have just role modeled, listening really well and really good bedside manner and compassion. The physician who treated me, Dr. Pappo, still works at St. Jude, and so I've gotten to work with him a little as well, and he role modeled wonderful bedside manner. And then my primary research mentor as well, Dr. Federico has taught me a lot. And just watching her with our shared patients and the way she tells family news and the way she explains things has been really helpful to me, too. So I would say a lot of mentors and a lot of therapy. Dr. Lidia Schapira: I like that combination. Clearly, it's been very productive and useful for you. Tell us a little bit about choosing to work in this field after your personal experience. I mean, it sounds like you were headed to St. Jude's to a laboratory to do research even before the diagnosis, but one could easily imagine that you would have chosen to become a dermatologist after this, or somebody who was not totally immersed in this culture of cancer and also a lot of grief and suffering, as we've just said before. Tell us a little bit about your research passion and how these two themes in your life, your personal experience of cancer and survivorship and your research, have meshed. Dr. Maggie Cupit-Link: Well, I think I knew that I was going to do this career in some capacity when I was watching the kids around me during my treatment. And I think this is one of the reasons why it was so important for me to be treated at a pediatric institution. I know that the AYA population is sometimes treated with adults and sometimes children, and I would advocate that being treated with children is helpful because children are miraculous, resilient creatures. And I remember deciding that I was going to have to fix my attitude during chemo because I was very depressed and very angry and deciding that maybe it would help me if I could just play with the kids in the waiting room and try to distract them and make them have a better day. And so I decided I would try to do that for myself, but ultimately they distracted me and made me have a better day. And so the more I was around the kids, the more I knew that they just hold so much optimism and innocence and light that I feel that we lose as adults. And I wanted to be around it. So in a way it was selfish that I would choose this career because I just wanted to be with them, but also knew that if I was going to go through all this nonsense, I better use it. That was very motivating for me. And I think it has been a gift from my experience and maybe my therapy and who knows what else that I'm able to take the bad and the grief that I experience personally and use it to feel differently about the grief that I feel as a doctor. I think I feel differently about loss than my colleagues. It's still hard when I see patients suffer, when patients lose their lives, it's still hard. But I think it's hard in a different way than it is for some of my colleagues. And for some reason, I think I feel more comfortable in that space. I think I feel comfortable around that. Dr. Lidia Schapira: Tell me a little bit more by what you mean by saying that it is hard, it has to be hard, but it's hard in a different way because of your lived experience. Tell me a little bit more. Dr. Maggie Cupit-Link: I think I'm not uncomfortable around suffering and death. I think I feel very comfortable around children who are suffering and children who are dying, doesn't scare me and doesn't make me feel like I need to turn away, because I feel it's familiar in a sense. And I think I also, having been the patient who received so much comfort and support and love from providers, should I have died, I still would have valued all of that support so much that allows me to value the support that I'm giving, even in the face of death. Dr. Lidia Schapira : Maggie, you're amazing. Tell us a little bit about your research and your plans now that you're going to be finishing your formal training? Where will we find Maggie in a few years? What will you be doing? What will we be reading? Dr. Maggie Cupit-Link: Well, I have really enjoyed doing clinical research. Back in college, after I finished therapy and went back to school, I did join a couple different St. Jude labs and did a variety of different things. But I was not a natural in bench research. I broke a lot of things. I'm very clumsy. It was not my area. I was not good at it. And that's okay. I've decided to come to terms with that. I love science itself and it's been really wonderful to get this Master's in Clinical Investigations throughout fellowship because I could directly apply a lot of those skills to my research in clinical research. And so I'm really passionate about writing and helping with trials, clinical trials, but specifically would like to help with trials that focus on acute and late effects of toxicities. One of my major research projects has been creating a prospective study to evaluate the early late effects in high risk neuroblastoma survivors. And I chose that population because they receive all the therapies that you can imagine, the kitchen sink, and some novel immunotherapies that we don't really understand fully yet in mechanism of action, and so things like that, as well as evaluating acute toxicities and interventions for those. I distinctly remember every inpatient chemo that I experienced turning to my mom and saying, "There has to be a better way," because my burden of side effects was really high. And I just remember saying, "There has to be a better way." And my mom would say, "Yes, there has to be. You can figure that out one day." So I do, I hope I can make some small changes in the way we give conventional therapy and the way we handle side effects as well as prevention of late effects. I am currently collaborating with Children's Oncology Group on one of their projects in the late effects of neuroblastoma, and I hope to continue collaborating with that group as well as my career advances. I'll be an attending physician at Cardinal Glennon Children's Hospital, which is a part of St. Louis University. And I have family here in St. Louis. My husband is a dentist here with his dad. They have a practice together, so it was really important for us to be here. And this hospital is a charity hospital as well, which I really think is a wonderful thing. And that makes me feel a little bit tied to St. Jude, since it's a charity hospital as well. And so I hope to be able to continue some of the clinical projects and some collaborations with the COG as I take care of patients. And I do hope to continue writing other stuff as well. Dr. Lidia Schapira: Maggie, I have to ask you one last question, and that is that in your piece you say you were 19 and fertility didn't matter to you then, and you couldn't have understood then or couldn't make space for the later. Now that you are where you are and you're dealing with young adults who may be your patients in similar situations, tell me a little bit about how you think about involving the parents perhaps in this conversation or sort of making space to attend to some of these very thorny issues that may have so many repercussions on future health. Dr. Maggie Cupit-Link: I think it depends on the patient of course. Because, as you know, some patients can't have a conversation about fertility based on medical acuity. But when a patient has the luxury of time, I think that that's just not a discussion I rush through. And I agree with you that using the parents perspective would be incredibly helpful. I think, I've had a few older patients that I discuss this with, and they're all different because I even had a 17-year-old patient who told me she wanted to be a mom for sure. And so she was different than me and that she already knew that was important to her. But when people think it's not important, I just encourage them to think about it more and talk to their parents about it and to remember that who they are today is not who they were 10 years ago, and who they're going to be 10 years ago is not who they were today. And that this is something you can't time travel with. This is your chance to make a decision. And really, the fertility preservation methods, generally, they're pretty safe and not traumatizing. And so it's sort of like, why not just go ahead and do it? Especially if the institution you're a part of is offering it. And I think there are a lot of ways to get funding for that, too. Dr. Lidia Schapira: Well, you are definitely a champion. Dr. Maggie Cupit-Link: Thank you. Dr. Lidia Schapira : I know that our readers and our listeners are going to follow your career, and I thank you so much for your thoughtful essay and for agreeing to this conversation. It's been a real pleasure. Dr. Maggie Cupit-Link: Well, thank you. I have one more thing to tell you before we end. Dr. Lidia Schapira: Yes, tell me. Dr. Maggie Cupit-Link: So after I had the baby, my doctor and I decided we would wait to get on birth control until we saw if I was going to go back into menopause or not. We waited, and then I got pregnant again. And so I am 16 weeks pregnant with a baby boy this time. And so I'll have my second child 12 months after the first. Dr. Lidia Schapira: Oh, my goodness. Dr. Maggie Cupit-Link: It is a blessing. But after that, I might have to consider birth control to space some- plan, space some people out a little bit. But we're very excited. Dr. Lidia Schapira: The gift of your survivorship is now in your 30s. You need to have that conversation about family planning that most people and couples have earlier on. So congratulations. Congratulations. Dr. Maggie Cupit-Link: Thank you so much. Dr. Lidia Schapira: Beautiful way to end. 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. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Maggie Cupit-Link will be a clinical oncologist at Cardinal Glennon Children's Hospital in St. Louis, Missouri. Additional Reading:Why, God?: Suffering Through Cancer into Faith, by Margaret Carlisle Cupit, et al

Listen to ASCO's Journal of Clinical Oncology essay, "Three Days was Enough" by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. The essay is followed by an interview with Thomas and host Dr. Lidia Schapira. Having medically adjacent experience, Thomas shares her personal story of helping her family come to terms with hospice care for her father. TRANSCRIPT Narrator: Three Days Was Enough, by Teresa Hagan Thomas, PhD, BA, RN My dad agreed to receive hospice on a technicality. It happened after weeks of trying to get him home oxygen. My brother drove him to the oncologist's office, and I helped him get into the wheelchair. He did not complain, but just asked me to hold his coffee mug, smiling because I snuck him a fresh donut. Three months before, dad was well-maintained on treatment for a neuroendocrine tumor. It was not until two separate, non–cancer-related hospital admissions kept him off treatment that the cancer saw a chance to hijack his body, take over his organs, and lead to a precipitous decline. As we waited for the oncologist, I told dad not to downplay his shortness of breath. But he wanted to look good enough to get chemotherapy the following week, the only way he saw to resolve his lymphedema and keep the cancer at bay. He failed the oxygen saturation test by one point, and having not qualified for home oxygen, we drove home disappointed without further recommendations or support. The sense of defeat was maddening. We were batting down an escalating onslaught of health issues at home only to be turned away from the professional caregivers when we most needed their advocacy. I was enraged that all the work arranging the appointment led to nothing and disappointed for my dad as he sat consumed in his pain and shortness of breath. His oncology team was supportive when his health was stable but did not have the skills or systems to proactively help us manage the dying process. I channeled my disillusionment with the health care system by calling in favors for a palliative care consult, both aware of my privilege but also stopping at nothing to give relief to my dad. A few days later, my dad and mom were willing to accept hospice care for the singular purpose of getting oxygen. I was sitting next to my dad in his home office, amix of posters from his travels abroad and family wedding photos surrounding us. When he asked for my thoughts about hospice, I carefully laid out what I saw as the benefits—namely, he would immediately qualify for home oxygen and get a level of care beyond what his oncologist could offer. But as I tried to give him all the words I knew from my professional life, I just saw the man who raised me staring back at me hoping for a way out of the painful, weak state he was in. He was not giving up on treatment or controlling the cancer. I was not going to change that. I wanted that, too. Now his eyes were sunken, all the fat gone from his face, and his entire body working to breathe. His belly was large, the tumor taking over, and his legs swollen with lymphedema. I felt the boniness of his shoulders and back. There was no coming back from this. I was in disbelief that he was dying so quickly, selfishly wanting him to stay but also knowing he deserved a pain free death. He agreed to enroll in hospice, with the plan that he would unenroll and try to get more treatment. I wanted to be right there with him, treating this as a temporary detour and not the end. I looked him directly in the eyes, searching to see any recognition that he would never get treatment again and that this was it. Not seeing anything, I tried to open the door to discussing death, reminding him how tenaciously he had fought to keep this cancer controlled and acknowledging the need to focus on his quality of life. I desperately wanted to have an open discussion about dying, but his stoic Irish mentality kept us from having that heart-to-heart. Initially, I was disappointed that my attempt had failed, but now I recognize that achieving a good death did not depend on verbalizing that he was dying. He was living and dying, hoping and accepting, trusting and doing his own thing. Our plan was logical and irrational. I remember thinking people in these situations needed to face reality. Here with my father, being so direct would be counterproductive. He very likely recognized what was likely to unfold, and hospice allowed him the unstated permission to let go. I called his oncologist, and together dad and I asked to enroll in hospice. The oncologist responded, "We are so glad you finally made this decision." By that night, the hospice nurse was sitting at my parent's kitchen table preparing us. Dad was sitting in the front room, finally relaxing in the plush leather lift chair we impulsively bought for him, with the oxygen machine humming at this side. We grilled the hospice nurse with questions. She kept saying how fast patients with cancer seem to go downhill. She told us without telling us. She gave us breadcrumbs, just enough information to get us through each step of the dying process, giving morphine, getting a hospital bed, giving Ativan, and finally seeing him pass. Three days after enrolling in hospice, he died at home withmany of our family at his side. Just like the hospice nurse said he would, he died on his own terms: after he had said goodbye to all his siblings, after the infant he and my mom were fostering was placed with his adoptive parents, and after all five of his children were at home with him. He died with dignity, mentally capable until the last hours, and surrounded by love. His exact terms. I am not sure what conversations were had between my dad, my mom, and his oncology team in the weeks before he died. I do not know if they openly discussed the need for palliative care or hospice. Dad's providers might have, and my parents willfully or naively missed the clues. I can imagine for the oncology team, discussing hospice meant admitting that the treatment plan had not worked as intended and that they could not meet my dad's needs. I know for my parents, discussing hospice would give air to the idea of death and therefore was not only avoided but actively discounted. As a researcher focused on palliative care, these dynamics were not new to me. I recognize how the stigma surrounding hospice and palliative care prevents earlier provision of quality end-of-life care. That knowledge did not prepare me when it was my dad dying. Awakening to the reality of dad dying was incredibly difficult when every hour we were managing his frenzy of health issues. Three days is used as an indicator of poor end-of-life care since people are eligible for hospice when they have a 6-month life expectancy.1 My dad did not openly discuss hospice until days before he died, but the number of days did not matter for my dad. What he was now able to do—because of hospice—during those days mattered more. During his last 3 days, dad meticulously rewrote his will, had it notarized by a hospice social worker, visited with his siblings, and made amends for long-past transgressions, enjoyed his favorite foods—fresh Boston cream donuts and black French press coffee—and spent quality one-on-one time with each of his kids and most of his grandkids. Although death was never directly discussed, neither was the idea of unenrolling in hospice. Hospice was what was allowing him to maximize the mental and physical capacity he had left. Those 3 days took my family from being stressed to our limit trying to manage dad's disintegrating health to feeling like we were being led by competent, caring hospice nurses who picked up our phone calls and responded within minutes. Now a year since he passed, I have a newfound appreciation for the complexity of discussing death with families and an even greater desire to advocate for improved end-of-life care for patients with serious illness. Despite his dramatic decline in health, my dad had a good death thanks to his hospice team. Three days was all it took. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we're joined by Dr. Teresa Thomas, Associate Professor at the University of Pittsburgh School of Nursing. In this episode, we will be discussing her Art of Oncology article "Three Days Was Enough." Our guest's disclosures will be linked in the transcript. Teresa, welcome to our podcast and thank you for joining us. Dr. Teresa Thomas: Thank you. It's great to be here. Dr. Lidia Schapira: It's great to have you. So let's talk about your beautiful piece, which is very personal. Thank you so much for writing and sending this and sharing this. In your piece, you say that you waited about a year before you thought about writing. Can you tell us a little bit about why you waited and why perhaps for you it was important to take some time to process the experience and then decide to share it? Dr. Teresa Thomas: Absolutely. Well, I think it would be false to say that I waited a year to write it. I think I was writing it for a year. And like a lot of researchers, I really process things through writing, trying to make sense of the passing of my father, of course, but also what this means for me professionally. It's very ironic that everything that I study in my research, things that we encounter clinically, unfolded right there extremely poignantly with my father. And like anyone, I'm just trying to make sense of it and trying to find lessons learned where we as nurses, healthcare providers, researchers, can push things forward a little bit, which I think is what I was trying to do with the piece because it did raise a lot of questions for me and is making me rethink my research questions and how I conduct myself and what the important areas of our field really are. Dr. Lidia Schapira: So let's talk a little bit and go deeper into that. First, I wanted to talk a little bit about your vulnerability, personal vulnerability. It's your father we're talking about, and you clearly adored this man who is your father. Can you talk a little bit about the emotional aspect of dealing with the family's acceptance finally, or the family's readiness to call hospice in? Dr. Teresa Thomas: Absolutely. I mean, it's all of the emotions. When I think about it, it was this very awkward place of being one of the few medically adjacent people. I'm not a practicing clinician. I am a researcher who has a nurse training. So it was this 'I know enough and the family's relying on me and I'm going to the appointments.' And being that in between, between the oncology team, my father, my mother, my siblings, people asking questions. And at the same time, I know this story. So it was personal and distant. I knew what was happening, that he was dying. I didn't want to know that he was dying. And it was just a crazy time too. Every day there were a thousand things going on. I didn't put this in the piece, but I was also extremely pregnant at the time, so had hormones going. My mom was getting sick herself with cancer, ironically, right as my father was dying. It was just absolutely insane. And now we're trying to unpack all of that. But to be that person that people are relying on to understand what's going on, to shepherd them, and also not really wanting to know, it was a hard juxtaposition. I knew what should be happening, right? I knew that we should be having these discussions about palliative care. I knew that he was eligible for hospice, I knew he should be on hospice, but I wasn't ready. And professionally, I wear that hat of a nurse and a researcher very reluctantly. When I'm dealing with my health care, and especially someone else's healthcare, I do not disclose, I do not try to interfere. And for Dad, I had to step up and push and interfere a little bit, which is extremely awkward and not comfortable. Dr. Lidia Schapira: Let's talk a little bit about readiness, because readiness means so many things, but it's such an important theme here, and it's often such an important theme when we look at the literature about end of life communication. Can you talk a little bit about how this experience has informed the way you think about readiness, readiness to accept that it is indeed time for that call to hospice? Dr. Teresa Thomas: Absolutely. So I think as a researcher and as a clinician, you want that discussion, you want the documentation, you want all the ducks in a row. You need to understand, do they get it? Is their head in that space where they're making plans? Can you think about what you want your death to look like? We need it said, we need it laid out so that we can check that box. And obviously, there's a lot more than checking boxes when this is done correctly and in a patient centered way. We didn't have time for that to happen, and yet everything still laid out. Now, I write in the piece, my dad was just very stoic and had a history of not talking about emotions. And I don't think it's all too different than his generation. And maybe men in general or there are patients that are just like that. There were never those deep conversations with the oncology team. There basically wasn't that conversation even with me. So beyond that, I mean, beyond just saying we had that conversation, what the piece is trying to say, or what I was trying to say was that it was the things that he did that were more important, he literally rewrote his will in his last days. In his few moments of clarity, he was sitting there. He was a wills and estates attorney. So, I mean, he was fully equipped to do this, but this is what he was doing. He knew that he was dying. He never voiced it. He never made a specific plan. But we had a care team in his oncology team, and absolutely in his hospice team, who just shepherded us and allowed him to do everything that he would have done even if he had had six months in hospice. And that's what was more important. He got what he wanted, and he was allowed to do what he wanted. And that's now how I'm thinking about end of life care and where our field in research and in executing that needs to go. Dr. Lidia Schapira: I think that's incredibly profound. I think one of the lines that I enjoyed the most in reading and rereading your essay is when you just describe what actually happened and how he relaxed into the chair. He relaxed when he had oxygen. I mean, it wasn't so much what he said, but what you saw there was even the physical signs of somebody who says, "Well, you know, something else is happening here." There was a transition that you actually appreciated there and captured. Am I right? And did I read that right? Dr. Teresa Thomas: Absolutely. That was the turning point. I mean, we are a big family. We never make impulse purchases. But my sister and I, we just drove out. We didn't care about the cost. I think my mom gave us her credit card. She never gives us a credit card. And we just said, "We don't care. This is our dad. We're buying this." And to see him after this, just extremely precipitous decline where every breath in and out and that searching for air and all of those signs, even to take away a little bit of that, absolutely felt so good. And he wasn't totally pain free, but he had oxygen. I mean, the most basic thing you need. So, yes, that was a very good feeling. Dr. Lidia Schapira: So the labor of breathing can be overwhelming and in a way distressing. Whether we call that painful or not is maybe just a matter of the language that we use. There's another theme that emerged in your writing, and again, I wanted to hear your reaction to this, and that is failure. You use the term in terms of, in so many different ways, perhaps the failure of the oncology team to develop or deliver or propose a treatment that was really good. They were done. So they- in some ways, there was a sense of failure. It was a bit of a failure of capturing the right moment to make the hospice referral. It wasn't quite what the books say we should be doing. There's a lot of that in the essay. Can you talk a little bit about how you understand failure and how that concept may in some way interfere with our ability to act or appreciate things? Dr. Teresa Thomas: There were no specific failures as more of a secondary caregiver at the end who stepped in to assist my mom. There were likely things going on that were under-recognized, unappreciated, or because nothing was said directly that there could have been soft leeways into. "Let's talk about hospice." That, I think, my parents did not want to hear, and that door was closed. That's where additional layers of support in how do we talk about this as a family? How do we introduce, well, hospice isn't end of life care necessarily, but there are additional supports that hospice allows that your typical oncology practice can't provide. I remember one conversation when my mom called me up and she was telling me that she had just met with Dad's team, and she was saying, the oncologist said, this is the last treatment, that after this, there's nothing left. She was going on and on, and I wanted to basically rip the band aid off for her. And I said, "Mom, they're telling you that it's time for hospice." "No, absolutely not, Teresa. Hospice was not brought up. Don't bring up that word to your father. All they were saying was, this was the last treatment." Now we can talk about that with my mom and say, "Do you see what they may have been laying the groundwork for?" And she says, "Yes, now I understand. But at that time and place, that soft entry, that door was not being opened by them." And I don't think that's untypical. I think that we did the best that we could with the situation that Dad had. Dr. Lidia Schapira: So, Teresa, I'm struck by the incredibly generous and wise framing that you use to talk about this. You could have said, "Oh, my goodness. It was only three days," and instead you chose to say, "Three days were enough." So I wonder how you did this, how you actually looked at it from that perspective, because so much of what happens to us is defined by the lens through which we see it and the words we use to construct the narrative. So tell me how you got to, "Oh, my God. They weren't ready, and there was so much failure," to, "Hey, three days was enough." Dr. Teresa Thomas: The three days were important for me because one year ahead of my dad getting sick, I was writing a paper with one of my mentors, Yael Schenker, and one of the wonderful med students that we work with and we used it as an indicator of poor quality end of life care. Did the patient enroll in hospice within the past three days? And we had these wonderful discussions with Yael and Bob Arnold and Doug White and everyone here at the University of Pittsburgh involved in palliative care about what does that mean? And is this just a random quality indicator with no real world value? And I respect all of their opinions because they do see this clinically, whereas as a researcher, "Oh, this is easy for me to analyze and I have a citation that says this is a quality indicator, so let's use it." And I thought, "Oh, isn't the world ironic? This is exactly what happened with Dad." And it was. I mean, maybe part of it is to our Catholic faith, and threes are very important so I think that was a little for my family. But there was nothing else to do. We opened up, we had conversations, we had heart to hearts. We found when dad was mentally with it, we sat down with him. I gave him his coffee. He always had a doughnut, he was pre-diabetic. Who cares? There was ice cream, there were donuts, there was coffee. All of a sudden we went from, "Don't give Dad any pain meds," to, "Where's the morphine? Give him some more." And we timed it so that each one of us kids and his wife and his siblings, we got to say the things that, man, if it was any other illness or any other setting where we weren't there, we would have lived our entire lives regretting not having had that. Would I have wanted him to be around when the son that was protruding from my belly was born a couple months later? Absolutely. Would I have wanted more trips, more meals? Yes, yes, and yes. It wasn't going to happen. And it didn't. That's selfish. I mean, that was a selfish desire. He lived a wonderful life. He closed out everything in those three days. He said his goodbyes. He was ready to go. And our family is a strong family. We carried my mom through it and we carried each other through it. And for him, he deserved to go without the pain, the loss of control, the loss of being himself. When we moved him into the hospital bed, that was it. We had to help him go to the bathroom within the last 12 hours of life. And I thought, this is not my dad he's going to check out because this is just not how he's going to live his life. Is that worth it? No, that wasn't worth it. And that was him. And that's what the hospice nurse told us. Everyone checks out when they're ready. That's Dad. Dr. Lidia Schapira: I can't resist the urge to ask you this question of how you're taking this life lesson, this really important story which you framed and articulated so beautifully here for us into your work. Dr. Teresa Thomas: So my work has always been in patient centered care, as nebulous as a concept as that is, and promoting patient self-advocacy. How do patients say what they need? Which is the great irony, right? That my work is corresponding exactly with what I experience and see. And I think that's probably why I love this research question. And now I see that not just the cancer experience, but framing that end of life care. And what does hospice mean? I think we had the best hospice team in the world. I don't see how any other hospice team could deliver as great care. And then, of course, I'm looking into, is all hospice like this? What are the hospice outcomes? And I realize, unsurprisingly, that we absolutely are spoiled, and this is not what most people experience. So I'm lucky that I'm in a place here at the University of Pittsburgh and with researchers that we have a palliative research center. This is easy for me to pivot into this place and to think about how do we create teams of clinicians, policies at a local level, at a state and a federal level that allow people access to really good clinicians at the end of life - clinicians that understand absolutely there's a medical management part just as much there's a human part that's happening here with the patient and with the family. What was it that our hospice team did? It's the easy things. They gave us one sheet of paper, one phone number, "Call this number. We will pick up. You do not need to give us your medical record number. You don't have to tell us a history." We called that number any time, and someone answered our questions. So basic, patient centered care, so basic. How do we do that? How do we do that at a systems level? How do we prepare patients to work with their clinicians when that's not there? These sort of high touch, but very difficult to innovate in clunky segregated systems. It's given me direction, and it lets me feel like I'm helping my family in retrospect, too. Dr. Lidia Schapira: In some ways, it keeps you connected to your dad. Dr. Teresa Thomas: Absolutely. Dr. Lidia Schapira: Yeah. Well, thank you so much. It was a really beautiful, beautiful piece. Art of Oncology is about telling a story. But stories can inspire, stories can lead people to find their own path towards advocacy or research so thank you so much. To wrap this up, do you have a final message for our readers and listeners? Dr. Teresa Thomas: Everyone has their experience with end of life and with palliative care, maybe, but definitely cancer care, and I just hope that it strikes a chord and makes people think about how we can make sure that families and patients receive the best care at end of life. Dr. Lidia Schapira: Well, thank you so much, Theresa, for your story and for what you do. 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/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Teresa Thomas is an Associate Professor at the University of Pittsburgh School of Nursing.

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

Listen to ASCO's Journal of Clinical Oncology essay, "The Road Less Traveled: Perspective From an Australian Oncologist" by Stephanie Hui-Su Lim, Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. The essay is followed by an interview with Lim and host Dr. Lidia Schapira. Lim shares her thoughts as an oncologist dealing with a patient that has decided not to continue with treatment. TRANSCRIPT Narrator: "The Road Less Traveled: Perspective From an Australian Oncologist" by Stephanie Hui-Su Lim He had been diagnosed with metastatic colorectal cancer in his late 30s and was responding well to first-line treatment. Physically fit, with a good tolerance to therapy, there was no stigma of sickness or telltale signs of cancer lurking around him. His partner usually attends with him, offers polite nods, few questions asked, but you could sense her underlying nervousness and fear of the unknown. Between the short phrases of broken English and the interpreter talking, consultations were usually pleasant, the right questions were asked, and I would end the consultation by asking how his family was doing back in Vietnam. Born to Chinese-Vietnamese parents in a city on the outskirts of the capital, he migrated to Australia 10 years ago. He worked hard, exercised, ate a healthy blend of an Asian and Western diet, and check-boxed all the requisites to build a good life. On this occasion, his cancer was slowly progressing although remained largely asymptomatic. His optimism stayed stable, and he kept his full-time job. I discussed switching treatment. "Do you have any questions?" As I shuffled the consent form, information sheets in Vietnamese, pathology form, imaging request, and follow-up bookings, I waited for the interpreter on the other end of the phone to speak. COVID-19 was still lingering, and our face-to-face interpreter service had largely been replaced by phone calls. My now 40-year-old patient, alone today in the clinic room, looked at me and the care coordinator, then spoke something to the phone. The voice on the other end said he has no questions, he is "keen to get on with it." "Ok then, we'll get him to sign here, and I'll need your healthcare interpreter number too." An exchange of words ensued, perhaps some things were repeated over. Then my patient smiled, and waited. "He says thank you doctor but he doesn't want any treatment." It was not the answer I was expecting. I had explained his slow disease progression, multiple lines available, and good tolerability of treatment, maintaining his quality of life and maximizing survival. I had gone through the projected life expectancy at this point, which was still measured in the order of short years if we pursued all standard therapies. "Can you ask him again? That he does not want any treatment?" Perhaps the interpreter had not relayed what I said. Perhaps I had not emphasized the benefits of continuing treatment. Perhaps there were misplaced reasons for declining evidence-based treatment, the clues of which I had learned to pick up quickly, gleaned from conversations over family dinners from my own family of migrants. When my patients decline treatment in a context where the clinical benefits clearly outweigh potential harm, I often feel I have not done enough. If I spent more time talking them through their decision making, guiding them through hypothetical what-if scenarios, then would we have gotten to the same page? Was I sure they were compos mentis? Should I call the other listed relatives and have the same conversation with them? In his case, he had made a capable and informed decision. We are used to the well-trodden path of exhausting appropriate standard treatment before transitioning to a best supportive care approach. However, when patients choose the less traveled path where their cancer journey and life expectancy are truncated by choice, we may struggle to understand their decision. I felt a sense of frustration at his polite declining of potential years of life and unfairness when the next patient, unfit and exhausted of all therapies, begged for more treatment options or anything that could give them another extra day. I sought to try to better understand the reasoning behind his decision. I have encountered many culturally and linguistically diverse (CALD) patients throughout my journey as an oncologist and personal experiences in my own migrant family. Our health district has one of the most diverse populations in the state, with one in 10 having limited English proficiency. Almost half the population speak a language other than English.1 We often see as many interpreters as patients in the waiting room, multiple extended family members crowding into small consult rooms, and multitude of language translations of patient booklets being the only recognizable information to new patients in an otherwise foreign cancer center. I understood the importance of cultural awareness, and that cultural differences feed into decision making. But what were the beliefs, concepts, and cultural norms that shape what they do and value? An Australian study investigating the attitudes of Chinese migrant patients toward cancer identified several key areas including the nondisclosure of a poor prognosis, importance of family in mediating between health professionals and patients, incorporation of Chinese culture–specific treatment, importance of interpreters, and psychological and spiritual support.2 Chinese patients use combat strategies on the basis of traditional Chinese medicine, Chinese beliefs of food to maintain health, exercise with Qigong, Feng Shui/spatial organization, and ancestor worship.3 Chinese illness conceptualization includes concepts of karma, fate, and retribution.4 There are recurring themes that arise, with another study highlighting the importance of the Chinese beliefs in fate and luck, ying and yang, stoicism as a coping mechanism, importance of family, fear of losing face, and denial of diagnosis as a means of protecting the family. A common thread of family playing an essential role, rather than a patient autonomy approach, was evident. There is a need to incorporate these beliefs into culturally appropriate programs.5 Sadly, not much is known about the cultural impacts on patient decision making. Research into race, culture, and ethnicity is thought to be too restrictive.6 Research investigating interventions to improve patient-centered care and participation in the treatment process in CALD has found positive effects of culturally tailored video and patient navigator interventions.7 A recent review also found patient navigation as an effective strategy in improving patient care, from screening through to diagnosis, treatment initiation, and likely also in the active treatment and survivorship phase.8 Importantly, cultural barriers were evident. An Australian study looking at CALD needs in outpatient cancer clinics highlighted the importance of recognizing language-related needs and care teams adapting practices and available resources to make it work for CALD communities.9 Work in other CALD groups has also focused on the triadic relationship between the patient, the patient's family, and physicians.10 Latin American women who were less acculturated deferred to their families or friends to make treatment decisions, highlighting the importance of familism as one of the most culturally specific values for Latinas. Loyalty and solidarity among members of the family are integral to decision making. Asian and Latino patients are seen to have a higher rate of patient passivity because of cultural norms that respect physician authority.11 A systemic review of cancer beliefs in minority populations, the majority based in United Kingdom and United States, found low health literacy, fatalism, and stoicism as common themes.12 Decision making in a systematic review, with a predominant African American minority group, found the themes of spirituality, fatalism, and acculturation to be important in the treatment decision process.13 Ultimately, all these cultural beliefs and concepts feed into how patients decide which treatment road they wish to take. Shared decision making models in ethnic minorities have taken into account human values recognized across different countries and the relation between these.14,15 As clinicians, we often focus on the disease, with the goal being to get rid of as many cancer cells as we humanly can and prolong our patient's life expectancy while maintaining quality of life. I often feel we require tangible goals which can be measured in time and percentages, hazard ratios, and survival odds at 2 or 3 years. For the patient sitting on the opposite side of the desk, who are only single points on a Kaplan-Meier curve, goals may be very different, shaped by their own cultural values and beliefs. What numerical value can we place on traveling overseas back home, enjoying conversations over family dinners, rather than going to the cancer center for the next cycle of treatment? My patient had decided his goal was to return home to his family in Vietnam. I saw him in clinic several times, each time gaining more of an understanding of his decision. I spoke to his partner, we obtained a face-to-face interpreter. We discussed culturally appropriate support groups. He was active in local community groups who provided spiritual and existential support. I enquired about herbal remedies, which he had been on preceding his cancer diagnosis and continued with our pharmacist's approval. We turned to discussing where he was going to be living in Vietnam, potential complications during the flight home, provision of a medical letter, and copies of his tests. He remained uncertain about the prospect of further treatment, that it was hard to access good medical care and did not offer any answers about whether he planned to seek out treatment in the big city hospitals back home. He reassured me he would be fine. Every time I see a CALD patient, I remember my patient who politely said no, thank you. I wondered if he ever accessed any treatment, how quickly his disease progressed, when and how he died. My initial frustration has evolved into the understanding of how important it was for him to be surrounded by family. I found solace knowing he died with family by his side. The treatment he wanted could not be offered through an intravenous drip or medication. It could only be found in the safe familiarity of family. Every time I see a CALD patient, I try to create a culturally familiar place for them to be treated and place their decision making amid their cultural beliefs, norms, and values. The theme of last year's World Cancer Day is "Close The Care Gap." Language, literacy, ethnicity, race, income, education, socioeconomic status, and geographical location are just a few of the factors that contribute to the cancer care gap. We need to have cultural sensitivity in mainstream health care and respect the differences that feed into the decision to accept or decline treatment in ethnic minority groups. Ethnic minorities are defined as nondominant groups, connected by a shared cultural heritage, values, and often language. It is important to note that this is also a relative definition, and my patient in Australia falls into the CALD group, but would be the dominant group back in his home country of Vietnam. Health and illness are not only visceral but also a social and cultural phenomenon. Sometimes, it is recognizing that closing the care gap does not bring us to the same destination, but to walk the road less traveled with them. As the years pass and I reflect on my patient's cancer journey, I have come to understand that as his doctor, it was my job to ensure he understood his disease and treatment options. However, perhaps even more importantly as his doctor, it was my honor to support him down the path he had chosen. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. With me today is Dr. Stephanie Lim, a Medical Oncologist at Macarthur Cancer Therapy center in New South Wales, Australia. In this episode, we will be discussing her Art of Global Oncology article, "The Road Less Traveled: Perspective from an Australian Oncologist". At the time of this recording, our guest has no disclosures. Steph, welcome to our podcast, and thank you for joining us. Dr. Stephanie Lim: Thank you very much for having me. Dr. Lidia Schapira: Let's start by talking a little bit about the role of writing and reflection for us in oncology practice. Tell us a little bit about what led you to write this case up and then to decide to share it with your colleagues. Dr. Stephanie Lim: Yeah, so writing is definitely a creative outlet for me. I also love to paint, and I think there's so much art in the oncology space. There's so much storytelling, the rich and diverse stories that our patients live out in their cancer journey. So I think for me, writing definitely is an avenue for me to process the patient scenarios, to distill what I've experienced emotionally with the patient in front of me, and really to put it down on paper. It's almost a debriefing exercise as well for me sometimes. It's quite cathartic to write and to paint, and I find it's also a way to remember a patient. So if there's something I really don't want to forget, I think writing is a way to almost memorialize that patient's scenario and that patient experience. Dr. Lidia Schapira: Very beautifully said. So with that, let's go to the case in the particular patient that you chose to write about. And in my reading of your essay, I think you have a message. What is that message for the reader? Dr. Stephanie Lim: So I think let's take a step back and just go through some of the themes that really resonated with me, that took me quite a few years to go through and think through before I actually wrote it down in this essay. In fact, this essay is an amalgamation of quite a few cultural and linguistically diverse, or CALD patients that I've met and looked after over the years, and those themes just kept recurring. The first is patients when they said no to treatment. As a clinician, I struggle. I struggle with that when patients flatly refuse what I sincerely feel is the best treatment option for them. I feel frustration, disappointment, even anger and sadness, almost grieving that lost opportunity for potential life lengthening years that the patients may otherwise have. In fact, I was listening to one of your other podcasts the other day, "Knuckleheads", which, again, resonated with me because it was, again about another story of patient refusal and a different story, but the same theme. And I think when you add the CALD population into it, which is really the theme, the message of this essay, you add another layer of complexity, another layer of cultural diversity and differences to an already complex decision making process. So those two things really sort of challenged me over the years. And I think the other pervasive theme is that human side. We always talk about the art of oncology, the humanistic aspect, but it's true. So I think the importance of the patient's story and really just paying attention to the background and that lived experience. Someone once told me, medicine, it's a humanistic enterprise, it's not just about numbers and medians. In fact, in the essay I mentioned that the patient in front of me is really just one point on a Kaplan–Meier curve. Medians to them don't really mean very much. There's really no value that we can place on time spent with family. Or in this case, when I tell a patient they've got progression, or try and outline and map out the next treatment plan, and then they turn around and ask me, "Okay, doc. So can I hop on a plane, fly across to the other side of the world and spend three months with my family? Because that's what I want to do." So I think there's that struggle of trying to really do what's best for the patient in terms of medians and survival and quality of life, but also trying to balance those things that are really hard to put a value on. I hope the message of this essay is that we can try and understand, identify these things, pay attention to patients, listen to their stories, and really help appreciate those choices. So it's certainly by listening to them and really trying to understand more about CALD and the concepts and values behind their decision making. I've grown to appreciate the choices they make and really helped to support them down what I called the path less traveled, a very unfamiliar path that I otherwise wouldn't have chosen for them. Dr. Lidia Schapira: So let's unpack all of these wisdoms that you've just told us about. The motivation is clear, the intentions are clear. Let's talk a little bit about your discomfort as an oncologist, because I'm sure our readers and our listeners have experienced that when a patient gives you an informed decision to refuse treatment, why do you think it makes us so uncomfortable? And why did it make you so uncomfortable to have your patient say, "Thank you very much, I understand you, but no thanks"? Dr. Stephanie Lim: Yeah, I think as clinicians we want the best for our patients. And I think a lot of the time that is what's best in terms of survival, what the evidence says we should be doing, weighing up the pros and cons of treatment. And we map out the lines of treatment for our patients while trying to maintain a quality of life and take into account all their wishes, of course. But I think sometimes we might get carried away with what we want for them or what we feel is best for them. But listening, if you really spend time asking what they really want, it might be something as simple as I just want to spend more time with my family rather than coming to the chemo suite for another infusion. I think as time goes on I'm doing a lot more listening, a lot less talking. When I started out I was telling patients medians and this is what we're going to expect, this is the 50% survival rates, and a lot of time patients look at me and it means not very much to them. So I think for us there is a root that in our minds we've mapped out for them which we sincerely feel is the best for them. And I think when they refuse that it can be quite frustrating, but also I think, challenging because as I said, it's a path that's unfamiliar. When patients go from diagnosis to, "Well, I actually don't want any treatment," really they shorten their- as I think I put in the essay, intentionally shortening their survival and choosing best supportive care when they're not there yet is something that I still struggle with, especially in my younger patients. Dr. Lidia Schapira: So let's talk a little bit about that. And I'm just challenging you in the best possible collegial way here when we talk about honoring our patients autonomy and providing sufficient information for them to really give us informed consent based on being aware of their choices and trade offs. And yet when those decisions don't conform to what we think we would choose or what we've recommended, there's disquiet. And yes, we know that the patient ultimately is the main decider on what gives their life value and meaning, but it's difficult for us. Can you talk a little bit about how you resolve this tension in your practice? Even if a patient is very fluent in your primary language, that's almost a detail. It complicates things here. But it's not the only thing that really, I think, is so challenging and feels so difficult sometimes for the oncologist. Dr. Stephanie Lim: Yes, I think in the CALD population, there's several other layers of complexity. So yes, the patient is ultimately the person receiving treatment and yes, they are the ones who should be deciding what they want. I think in the CALD population it's more complex because we talk about patient and clinician shared decision making, but there is this triad of family physician and patient relationship that exists in a lot of CALD populations, not only in Southeast Asian or South Asian, but perhaps even in the Latin American population, and that importance of families. So there is not just a patient and a physician, but there is also the whole family that is making that decision. To complicate things in Asian culture, there is also this autonomy that's given to the doctor. So that belief that the decision making in some ways should be delegated to the health professional because they're the ones who know what they're doing. And a lot of my Asian patients might say, "Well, you're the doctor. You should be telling me what to do." So I think it's a balance between respecting that, if that is their belief, respecting that doctor autonomy, but also taking into account that triad of decision making with patients, family, and even the wider community. So I think certainly in a CALD population, my approach would be to really understand why they've made that decision, to involve the family in that decision making, perhaps to see the patient over time, over multiple consultations, which we've done with this particular patient in the essay, and really just to understand what the barriers are or what their reasons are for going down a different path to what I've recommended. And I think once that's all unpacked, I think it becomes quite clear and it gets us to the same page. Dr. Lidia Schapira: So, Steph, if this patient had been 65 or older, do you think it would have been easier for you to accept his decision to say 'no' to treatment and go home to be with family, whether or not access to any treatment is available to him there? Dr. Stephanie Lim: That's a good point. I think I personally do struggle more in my younger patients, patients closer in age to me at a similar stage of life, they have young children, and I think a lot of it is because they are so fit. We feel that they can tolerate so many lines of treatment. I'm almost grieving that lost opportunity, lost time that they may have with their children or their family. So I think definitely in the younger patients, it resonates with me more. I struggle more with that. Having said that, it's still a struggle when older patients who are fit for treatment say 'no'. But definitely, I agree with you. I think the younger patients definitely are harder to manage. Dr. Lidia Schapira: I was very impressed in reading your essay with the fact that you remained curious about the person who was your patient. You were curious and engaged and wanted to learn what he was thinking. And you not only wanted to make sure that he understood his options medically, but you wanted to understand the context, as you say, who else was influencing the decision, and still wanted to preserve the relationship. Tell us a little bit about how that evolved over time and what you learned and how you brought yourself to a place where you could accept this, at least not be distressed by his refusal of treatment. Dr. Stephanie Lim: So I think, again, a lot of it was listening to his stories. Over time, that conversation shifted from me trying to tell him that if you have this treatment, this is what we expect, this is what we could gain. These are the survival years that you potentially could benefit from. So I think the conversation, over time, shifted from that to a focus on his values, other support systems, whether it's the support communities that were in place, the importance of even complementary or Chinese medicines that he was also pursuing, basically trying to unpack all that. And I think our conversations shifted from a lot less talk about treating the cancer to treating him as a person and what he needed. So I think over time, I basically sat back and listened to him and what he wished to do. And over time, that conversation then evolved into, "Okay, you're going to leave, so how can I best support you?" And even then, I was trying to see if he was going to seek treatment overseas. I was ready to call someone at the other end of the world to say, "Here are the medical records. This is what can be done for him." But I think over time, I've come to realize that definitely was not his priority. He needed to be with family. He wanted to go home. And as a clinician, as his treating clinician, I think my job was to support him through that and try and understand. So I think over time, just spending that time listening to them, I did understand. I did struggle with it. But I think ultimately, I was at peace with his decision. Dr. Lidia Schapira: In the essay, you mentioned that your family also migrated to Australia. Do you think that their experience in some way has shaped your attitude towards understanding cultural and linguistic differences? And if so, how? Dr. Stephanie Lim: Yeah, thanks for asking that, Lidia. So I was born in Southeast Asia. In fact, I grew up in Brunei, on Borneo island, which is in the heart of Southeast Asia. My dad is Bruneian. My mom is Malaysian. I did finish off my high school in Australia and did all my medical training in Australia. So this is through an Australian lens. In fact, the reviewers wanted me to include that, to point out that CALD is a very relative definition. But I think I class myself as a 1.5 generation Australian. So I hope that I do have some insights from my background and my upbringing to understand a little bit more about the nuances, to be able to pick out some of the subtleties when I see patients, when I talk to patients, that complex cultural belief that underpins all their decision making. So I think that definitely, I hope, has enabled me to be more sensitive and to be able to pick out some of those nuances that helps me better understand and frame a patient's decision making. Dr. Lidia Schapira: And ultimately, did you feel all right with your decision and your patient's decision? Dr. Stephanie Lim: Yes, I did. So I think ultimately, the goal is to create this culturally safe and appropriate place for patients where they're comfortable, where the clinicians are also comfortable with that final decision that we reached. And I think we got there. But my hope is that with all future patients, that we can create this with the help of patient care navigators, patient translators. It comes from a systems level, a team level, and definitely an individual level to understand, identify these concepts, as I pointed out in the essay, to reach a point where we feel that the patients have had a culturally safe and language appropriate care, that we've explored all the avenues, all their concepts, all their beliefs, and we've reached the decision that we're both comfortable with. Dr. Lidia Schapira: Well, Steph, it's been a pleasure to chat with you today, and I know that I did, and I know my colleagues have learned a lot from reading your story and wish you all the best. And thank you for sending your work to JGO. Dr. Stephanie Lim: Thank you, Lidia, it was a pleasure chatting to you. Dr. Lidia Schapira: And until next time, thank you for listening to JCO's Cancer Stories, The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO shows 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.

Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute, discusses the importance of understanding patients who reject treatment in oncology. He emphasizes the significance of building effective relationships with patients, listening to their stories, and approaching healthcare with empathy and humility. The podcast explores the complexities of patient reluctance towards chemotherapy, the impact of storytelling in oncology, and the importance of effective communication and empathy in patient care.

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.