Cancer Stories: The Art of Oncology
American Society of Clinical Oncology (ASCO)
Embark on an intimate journey with heartfelt narratives, poignant reflections, and thoughtful dialogues, hosted by Dr. Mikkael Sekeres. The award-winning podcast JCO Cancer Stories: The Art of Oncology podcast unveils the hidden emotions, resilient strength and intense experiences faced by those providing medical support, caring for, and living with cancer.
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Dec 12, 2023 • 22min
Pet Therapy: How the Cat I Never Wanted Saved My Life
Dr. Fumiko Chino of Memorial Sloan Kettering Cancer Center shares how her unexpected adoption of a cat named Franklin provided comfort during her husband's battle with cancer. The speaker discusses the impact of pets in providing emotional support to patients and reflects on the role of art in oncology. The passing of Franklin highlights the need for improved cancer care and the connection between pets and patients in difficult times.
Nov 28, 2023 • 29min
Gosses and the Dalmatian Puppy: A Memory that Halts the Pain
Listen to ASCO's Journal of Clinical Oncology essay, "Gosses and the Dalmatian Puppy" by Dr. Zvi Symon, Senior Consultant at the Sheba Medical Center in Israel. The essay is followed by an interview with Symon and host Dr. Lidia Schapira. Symon reflects on an ancient Jewish tradition while seeking to palliate a dying patient. TRANSCRIPT Narrator: Gosses and the Dalmatian Puppy, by Zvi Symon, MD A few months ago, I was paged to see a newly diagnosed patient in the hospital with a malignant trachea-esophageal fistula to consider palliative radiotherapy. Despite the 60-minute delay that had already accumulated in my clinic, I hurried past the folks in my waiting room as they scowled their dismay, and promised to return quickly. My new consult was a 70-year-old man who had lost 30 kg over the past few months. He was a heavy smoker with chronic bronchitis and a squamous cell carcinoma of the upper esophagus gnawing into the cartilage of the upper airway. The surgeons ruled out any hope for surgical remediation. The gastroenterologist attempted to insert a stent but could not get past the tumor's stricture, so radiation therapy became the last option. On the edge of the bed near the hospital room's window sat Vladimir, a ghost of a man, coughing intermittently with a constant drool of saliva dripping into a stainless steel bowl that he held in his lap. I introduced myself, but he hardly acknowledged my presence, consumed by his own discomfort. I turned to his pleasant, gray-haired wife sitting in the blue armchair next to his bed. Before proceeding, I asked her what he knew about his condition, and she referred the question to him in Russian. Vladimir closed his eyes, sighed heavily and said softly: "I don't feel well and… cannot eat." His wife watched me as a sad smile played on her lips, and she struggled not to cry. I paused for a moment, remembering my full outpatient waiting room, but wanting to give his story justice. I turned to Vladimir's wife. "Tell me a bit about Vladimir, what did he do before he became ill?" I drew up a chair and sat closer and she sighed. "He worked as a builder. When the family emigrated to live here in Israel, his mother died soon after. He became deeply depressed and took to the bottle, spending most of the day sitting on the porch, drinking vodka, and chain smoking. A few years ago, I bought him a cute clumsy Dalmatian puppy who adored him, romping around happily, licking his hands, and jumping all over him. He developed a special relationship with the dog, stopped drinking and took the dog each day for a long walk—well, perhaps the dog took him for a walk." A smile flickered across her face briefly. "Unfortunately, the dog died a few months ago and he sank back into a depression, stopped eating, and has lost weight." I was touched and saw the tears in her eyes flowing freely. "Do you have any family, perhaps children you would like to call to perhaps join us for the discussion?" I asked. "We have two grown-up sons. One is currently ill with COVID and cannot come, and the other son also suffers from major depression: He has a hysterical paralysis and does not leave the house. I work as a cashier in the supermarket and am the only breadwinner for my sick son and husband." I wondered if she had any idea of his prognosis and started a discussion regarding treatment options. Vladmir's wife told me that she had heard that radiation therapy could help. And while I would have loved to have played the role of knight in shining armor, saving him from the ravages of his cancer with radiotherapy, the reality is that the intervention is controversial in the treatment of trachea-esophageal fistula. Should I raise the possibility of not doing the treatment? How would it be received? What could I offer in lieu? Was this an opportunity for a being and not doing discussion, one that talks about dignity and love and communication, about having the chance to say goodbye forever and even to confess and bless and confide? Patients and family are so often focused on the battle against the disease; they are loath to any suggestion of not doing, despite the minimal odds for a helpful treatment. I saw Vladimir's wife struggle to control her tears. She seemed so vulnerable and carried so much on her shoulders. I wondered if a hospice discussion, at that moment, would add to her huge burden. There was also a part of me that also debated, selfishly, if I should launch into a lengthy end-of life discussion with the angry waiting patients outside my clinic door? So often, we turn to our treatment armamentarium to avoid these deeply painful and complex discussions surrounding the end of life, particularly with patients we barely know. I breathed deeply, calmed myself and decided to keep it simple and avoid the dilemma. I gently explained that I could not guarantee good results, but radiation therapy may improve his pain and perhaps allow him to eat and drink. It was the answer she was looking for, though I grimaced as I wondered if it was the answer I should have provided. She seemed relieved and encouraged Vladimir to sign consent. Vladimir arrived at the computed tomography (CT) simulation suite sitting bent forward on the stretcher, drooling into the bowl between his legs. The radiation therapists, already running behind schedule, looked at each other, as if wondering if this was another futile heroic effort. "I know what you are thinking," I said to them. "But perhaps we can help. Let me tell you something about Vladimir, he had a Dalmatian puppy he loved, who took him out of his home for a walk every day after years of deep depression." Vladimir was contorted in pain, and the attempt to transfer him from the stretcher to the CT couch seemed impossible. All eyes turned to me with a perhaps this is too much look. Suddenly, Ilan, a young Russian-speaking radiation technologist who had recently joined the department, had an idea. "Vladimir, rest a few minutes. You know, I too have a Dalmatian, let me show you a picture." The deep lines on Vladimir's face faded into a broad smile as he took Ilan's cellphone to see the picture of the dog. From the look on his face, he seemed to be transported far from the simulation suite, and I imagined him romping with his Dalmatian puppy in a sun-swept meadow with gurgling streams and lush green grass and watched as Ilan then slid him effortlessly onto the couch of the scanner. The scan was completed, Vladimir returned to the ward, and I retreated to my workroom to complete the contouring of the structures for the radiotherapy plan. It was a nasty 12-cm mass involving the full circumference of the upper esophagus and eroded into the trachea, almost obstructing the left lung. The dosimetrist calculated a conformal treatment plan, and as I approved it, I uttered a little prayer that this would make him more comfortable. Suddenly, Ilan rushed in, hair tousled, pale and agitated, and eyes red. We were too late. On returning to the inpatient ward, Vladimir experienced a massive aspiration and died less than half an hour after we had scanned him. Ilan was terribly upset. As a young therapist, this was perhaps his first patient who died so quickly and unexpectedly. I tried to comfort him. "I know it hurts, but nothing we could have done would have changed what happened. Did you see his face after you mentioned his puppy and showed him the photo of yours? We did our best for him." After Ilan left my room, I reflected on the day's events. Was Vladimir what the rabbis refer to as a "Gosses?"2 (Gosses is a Hebrew word meaning a moribund patient). And if that was the case, was I wrong to even transport him from his room? When death is imminent in hours or days, Jewish religious law defines a state of Gosses in which it is forbidden to touch or move a moribund patient in case this could hasten death. The guttural rattle of a dying patient, unable to clear secretions, indicating death within hours or days, reminded the rabbis of the sound of bubbling when stirring the food in the cauldron. This onomatopoeia, in addition to a didactive narrative identifying the significance of performing an action which potentially changes the natural course of events, resulted in the analogy that moving a terminally ill patient which may hasten death is like stirring the food in the cauldron which may hasten the cooking on Sabbath, hence the term Gosses. The ancient rabbinic sages from the beginning of the first millenium drew an additional analogy between touching a Gosses and touching a dripping candle at the end of its wick which may hasten quenching of the light. Another aspect of the law of Gosses forbids performing any act which may prolong suffering and delay a merciful death. Thus, moving a patient to receive a futile treatment would also be forbidden under law of Gosses. 2000 years later, the notion that we should neither delay nor accelerate death was front of mind formeas I reflected on my treatment of Vladimir. I wondered if the ancient rabbis incorporated into their moral discussion the difficulty of stopping the roller coaster of trying to do more and more to help the patient. How about when the treatment itself fell into a gray area of effectiveness? What advice would they have given a physician with competing demands on his time and a waiting room full of outpatients who demanded his attention? In retrospect, the painful journey of Vladimir down to the simulator may have hastened his massive aspiration and would have been best avoided. In that sense, the Gosses may have been violated. But it also allowed him and Ilan to meet and share wonderful memories of a Dalmatian puppy which made him smile and forget his pain, even for a few precious moments. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today, we are joined by Dr. Zvi Symon, until recently Chair of Radiation Oncology and currently Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School. In this episode, we will be discussing his Art of Oncology article, "Gosses and the Dalmatian Puppy." Our guest disclosures will be linked in the transcript. Zvi, welcome to our podcast and thank you for joining us. Dr. Zvi Symon: Thank you, Lidia. I'm very happy to be here. Dr. Lidia Schapira: To start, I'd like to ask authors to tell us what they're reading or perhaps what they've enjoyed reading and would like to recommend to fellow listeners. Dr. Zvi Symon: Okay, so it's been a bit of a stressful time reading, but I may mention some books I've read in the last few months. I've been reading memoirs. One that I particularly found very touching was Paul Kalanithi's, When Breath Becomes Air. As a physician who had cancer himself and his struggle with his transition from being a consultant neurosurgeon to being a terminal lung cancer patient, I think it's an amazing and beautifully written and touching book. Dr. Lidia Schapira: It's a beautiful book. It's evocative and fresh. And you're absolutely right - we're completely in sympathy with and empathic with his amazing desire to live life till the last moment, right? It's just beautiful. Dr. Zvi Symon: It's really beautiful. And I think that memoirs is a very powerful genre for me. And another book that I enjoyed very much is Jan Morris' Conundrum, which is a story of a person who made a transition from male to female over 10 years. She was actually a member of the British team that climbed Everest and a journalist in The Times. It's a beautiful book describing what she actually felt inside and how she went through the medical process as well, of her sex change. And it's also beautiful. Dr. Lidia Schapira: Thank you for that. I haven't read it, but I will add it to my lovely list here. Tell me a little bit about writing and what that means for you. Are you somebody who has been writing throughout your career, or was this a story that sort of popped for you, that just needed to be told? Dr. Zvi Symon: Right. I think it goes back to when I was a high school student where my Math teacher told my parents, "Your son shouldn't do medicine. He should study English literature." My parents were devastated by that statement because my father was a physician and my mother's family were all physicians, and they were very angry at the time. And I was kind of a writer in high school, and then I kind of left it through my medical career. And now, as I have sort of finished my stint as the chair of the department and I have a bit more time on my hands, I've sort of tried my hand at getting back to writing. I needed to read a lot in order to do that. So I was reading genres. I think maybe some of the initial versions of this piece were written sort of more as a memoir, rather than an article for the Art of Oncology. And I think you guys helped me a lot. Dr. Lidia Schapira: I'm so glad to hear that we helped. Sometimes editors aren't particularly helpful in the views of authors, but I'm glad you feel differently. So let's talk a little bit about the creative process and sort of bringing in all of these themes that you did here. And back to your prior comment that this is in the memoir genre. You have a very interesting philosophical discussion of what a Gosses is and sort of the ethical moral conflict when a patient is extremely vulnerable, instead of recognizing when perhaps all that you need to do, or perhaps what you need to do is to be present instead of trying to fix or intervene. And I loved how you made us all really suffer with you, as you're debating this internally. Can you talk a little bit about that part of the story? Dr. Zvi Symon: Yes, I think just to put it into context, in my training in internal medicine, I worked in a hospital where hospice care was part of the rotation in internal medicine. I spent three months in the hospice, and at night, when we were on call, we were in charge of the ICU and the hospice. So you would be called to treat a patient in pulmonary edema and with CPAP, or intubate him or an acute MI, and then you would be called to a dying patient in the hospice. And the transition was initially very difficult for me. I actually felt my feet would not carry me to the hospice, and I didn't want to go there, and I had to kind of force myself. But after some time, I realized that it's actually much easier to treat pulmonary edema to than be able to sit and listen and talk to a dying patient. But the fulfillment that I began to feel when I overcame that kind of fear of going to speak to a dying patient, the fulfillment was far greater than getting somebody out of pulmonary edema. And that's kind of stayed with me to this very day. So although radiation oncology is a kind of something you have to do, and you sort of radiate, when I'm called to patients like this, and I do have time, then I kind of sit down with a patient and discuss the options and try to give other options because very often it's a kind of turf in the house of God. Somebody doesn't want to have that conversation with a patient, and they're kind of turfing the patient in a house of God sense to have some radiation. And I'm not sure that radiation in such cases– So this is something that I'm confronting quite often in my daily practice, and it becomes more and more complex culturally because when one is confronted with families who also want to be very active and are dreading having to live with the idea that maybe there's something they could have done that they never did, and they're putting a lot of pressure, then it's a very tough situation. So I'm very sensitive to these situations. I've often had end-of-life discussions with patients like that, sometimes against the wish of families that are close by. And the patient would say- well, they'd say to me, 'No, don't talk to him." And the patient said, "No, I want you to go away. Because I think this is the first time someone's listening to me, and I want to hear what he has to say." I feel very passionately about these– Dr. Lidia Schapira: I have so many comments that we would need hours to discuss. But, of course, the first comment I wanted to make is that some of the most humane oncological specialists I know are radiation oncologists, so I don't see you guys as just treaters and physicists wearing scrubs. I see you as incredibly compassionate members of the cancer team. And that brings to mind a lot of the current discussion about palliative radiation, this idea that we can just throw some rads at people because there's nothing to lose and maybe there'll be some improvement in function. So can you talk a little bit about that? I mean, here you are in a very busy clinic falling behind. You've got to walk through a waiting room of people who are sort of looking at you saying, "How can you be walking out when we had an appointment with you half an hour ago?" And you go and find Vladimir, who's despondent and can't have a conversation with you. And I'm pretty sure that you must have been going through this internal conflict even before you met your patient about what to do. Tell us a little bit more about the emotional impact for you. Dr. Zvi Symon: Yeah. With great trepidation, I actually go up to the department to speak to a patient like this. I think the electronic medical record, for all the problems with that, it allows us to kind of really quickly glimpse and get a true picture of what the situation is. So I had seen the imaging and I'd seen the size of this really very nasty tumor. And I sort of remembered the literature that it's a relative contraindication and it actually may make things worse. But I was getting calls from the department and the medical oncologist who consulted that I must see this patient, and they want that patient to get treated today. So with a kind of a heavy heart, I go up the stairs. I breathe deeply on the way to calm myself and take the staircase up to the 6th floor and walk very slowly up the stairs, trying to go through my mind, what am I going to do, and kind of enter the ward. And then I am confronted by this person who is terribly suffering, very terribly. And he doesn't actually want to look at me at all. His eyes can't meet and he looks kind of, his eyes are very dull. And I see his wife watching me and watching him and turn to her. They are immigrants to the country. And there's also a cultural issue and language problems and difficult socio– Dr. Lidia Schapira: If this were fiction, you could not have made it harder. I mean, when I remember reading the manuscript thinking, this poor immigrant, he's depressed, his son is depressed, the other son has COVID, his wife is weeping and says she's the one who's tried to make ends meet. You have all of these barriers in addition to this internal clock that you have somewhere else to be. Can't begin to imagine the pressure. So how did you get through that? Dr. Zvi Symon: Yeah, I think my mind was kind of ticking over and I think that sometimes we make very practical choices. And I knew that if I sat for too long and I fired a warning shot and said, "Well, this may not help and this may not do it," but I think that culturally I had the feeling that it was the wrong thing to do and that there was an expectation and the expectation had been created by the team, and it's very difficult to turn down that expectation. And I also felt that she was so frail and that she had really no support and maybe if one of her kids would have come within half an hour, I would have said, "Well, I'll come back after my clinic in the afternoon and let's have a chat with your son." But the situation was such that I thought, "Well, you just have to be practical and you have to get back to your clinic." It's a hard feeling that we make value decisions just because it's more comfortable for us. We want to finish our clinic and also go – Dr. Lidia Schapira: No question about that. Yes, and I think the reader will feel for you, as I did when I read it. I mean, I could immediately sort of imagine all these things playing out. So you follow your intuition, you assess it, you say, "Okay. We'll give it a try," right? And then you have your team to deal with and your lovely radiation therapist, the technologist who gets personally involved. And then you introduce the idea that perhaps connecting with something in Vladimir's recent past that brings him joy. Can this image of this puppy romping through the fields, is something that can maybe help you all? Like the glue, the emotional glue that keeps you together. Talk a little bit about that part, about how you tried to bring this element out in the story, to give another dimension for the reader, a view not only as the physician giving Vladimir care, but also leading your team. Dr. Zvi Symon: So I think that an open question to a patient about their– "Just tell me a little bit about yourself," is an invitation for a person to tell you about the things that they care most about, about the people they love most, that the things were of the most importance in their lives. And I think that kind of human connection, if we can kind of latch onto that and harness that to improve the way we communicate with the patient and the way we get the rest of the team to communicate with the patient, I think that can be very powerful. I mean, I myself love dogs, and I was like, really, my Border Collie just died a few months ago, and we buried her after 12 years, and she was a wonderful animal and part of the family. And in the two minutes that I had to listen to- that's what she told me about, she told me about the dog. And when I tried to motivate the team to add him as an urgent sim and he wasn't cooperating, then it just occurred to me to tell them about it. Dr. Lidia Schapira: It worked. It was amazing. Dr. Zvi Symon: And it worked. Yeah. Dr. Lidia Schapira: It was a beautiful story. I too, am a lover of dogs. I have a wonderful puppy now, and he brings tremendous joy. But your message is so full of compassion and humanity. It's basically back to Dame Cicely Saunders' idea that you want to know who the person is that you're treating and you want to know what matters to them. And so here you caught this moment of connection with the family and with the patient and with your young radiation therapist who needed to feel that he was actually helping this person. So it's a beautiful story. I want to just give you a chance to finish the interview by telling us something perhaps that you want the readers or the listeners to take away from your piece. Dr. Zvi Symon: Well, I think that the situation of, I think as physicians, we don't really ever know when the patient precisely is going to die. And the whole idea, I think, of a Gosses and my thoughts about the Gosses were, because it's sort of defined within Jewish religious law, someone that is going to die within 72 hours. Now, it's very difficult to define. We don't know that. We never do know that. But I think that that sensitivity to the comfort of a suffering patient and offering a treatment that may be futile or that is highly likely to be futile and that may be involved in an enormous amount of discomfort, I think that we have to be able to sit down with these patients and with their families and discuss other options as just very good sedation and not necessarily, I think, doing, but rather just being there, as you mentioned, for the patient. Dr. Lidia Schapira: It's a beautiful thought, and I think we all agree with you. And I think what made this story so poignant is that here you are, that time is compressed and you're introduced to the family as somebody who potentially could help fix something or provide something. So it's very difficult to step back, as you say, and do the deep work of sitting and talking and counseling and accompanying. But I think your humanity comes through and your desire to help comes through beautifully in the story. And I really thank you for bringing this concept to our attention. I think that it may be an old idea, but one that is still very relevant. And thank you for sending your work to JCO. Dr. Zvi Symon: Thank you very much. Dr. Lidia Schapira: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Zvi Symon is a Senior Consultant in the Department and Director of the National School of Radiotherapy at the Sheba Medical Center in Israel and Clinical professor of Oncology at Tel Aviv University Medical School.
Nov 14, 2023 • 24min
The Gift of Truth: Finding Closure After the Last Oncology Visit
Listen to ASCO's Journal of Clinical Oncology essay, "The Gift of Truth" by Dr. Ilana Hellmann, an Attending Physician in the Hematology Department at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann shares how it is an immense privilege and grave responsibility for physicians to give bad news to patients who have a terminal disease. TRANSCRIPT It was a hot and humid Tuesday in July, and I distinctly remember being grateful for the air conditioning in the pastel-shaded waiting room of the oncology outpatient clinic. My father sat silently beside me. We knew this room well, as we did the doctor we had arrived to see. He had been my late mother's oncologist until she had passed away just over a year previously from metastatic breast cancer. Dad remembered him being kind yet direct and had requested that he be his oncologist now that he needed one. I watched his hands fidget with the slip of paper bearing the number that would be called over the loud speaker. My father was 84 and a retired university professor of statistics. He spoke seven languages and his friends called him the encyclopedia as he was an endless fountain of knowledge in history, politics, literature, art, etc.…. His number was called, directing us to a room we had been in many times before. After greetings and some small talk about my late mother, Dr Cohen addressed my dad and slowly went through the history. He had had surgery for a squamous cell carcinoma on his scalp along with skin graft 6 months earlier. Two or 3 months later, he complained of pain in his right hip which seemed to worsen by the day. After some imaging and assessment by an orthopedic surgeon, a diagnosis of osteoarthritis was declared, and the treatment recommended was a total hip replacement. The surgery was performed and my dad, who had been suffering from extreme pain, felt immediate relief. He was delighted with the results of the procedure, delight that dissipated in an instant when the pathology report came back: metastatic squamous cell carcinoma. He had been quickly referred for a course of radiation which had been completed. This meeting was intended to discuss further treatment. Dr Cohen gently explained that my father's cancer was not curable and that there was no good treatment available for him at that time. I do not really remember much of what was said after that. I found myself thanking him for his time and helping my father to the car. The drive home was awful, with awkward silence broken only by a discussion about what he was going to have for lunch. We both pointedly avoided talking about the meaning behind Dr Cohen's explanations. I was stunned. I felt like my father had been fired by his doctor and that I had been left to deal with the consequences. I felt alone, abandoned, and betrayed. The next few days passed quickly as I juggled my busy hospital schedule with family dinners, school runs, and the sporting activities of my three boys—the oldest of whom was 11 years old at the time. The weekend came, and on Saturday morning, my husband and I planned to meet friends at the local swimming pool as we so often did in the hot summer months. Leaving him to clean up honey and pancakes, I went across to the apartment opposite ours to say good morning to my father and tell him we would be gone for the better part of the day. He was sitting up in bed and said: "Before you go, please bring me my phone book." He still used an alphabetized phone book, mostly in my late mother's hand writing. I found the book and held it out to him. "Find David Green's number" he said, which I did. "Dial it please" he said while looking for his glasses on the bedside table. I dialed and handed him the phone. I then listened as he greeted David—an old colleague from his years in academia. Dad had not spoken to David in many years. He explained that he had cancer, and that he did not have much time, but that he wanted David to know how much he had enjoyed working with him and to thank him particularly for his contribution to an article they had published together. I got up to go and, seeming not to notice, he asked me to dial the number of another friend. Realizing this was going to take some time, I called my husband and told him to take our boys to the swimming pool without me. I sat down next to Dad on his bed and dialed number after number. My parents had lived in a few countries, and my father's academic career had connected him with people all over the world. Over the course of almost 6 hours, he spoke to friends, relatives, old neighbors, and many work colleagues. He had a personal message for every one of them and started each conversation with a clear and brief explanation of the circumstances of his call. There were some people who were not home for his call, and he left long messages on answering machines. Those 6 hours were cathartic for the both of us. It was sad but also terribly beautiful and filled with my dad's signature black humor. Once we had contacted everyone in the phonebook, he continued his mission and gave me a list of people he wanted to be present at his funeral, as well as a second list of those he would prefer not to be there. Then, he handed me an envelope which contained a substantial sum of money. "This" he explained "is for the gentlemen who come to take my body." My mother had died at home, and he remembered the two ambulance men who had come to take her body to the morgue after she had passed. He had been struck by the difficulty of such thankless work and wanted to make sure they were appropriately compensated. Very soon after that Saturday, my father had a seizure and was diagnosed with brain metastases. As dad had made it very clear that he wanted palliative care and no admissions to the hospital, Dr Cohen connected us with the services of home hospice care. He deteriorated rapidly and died at home, as he had wished, 3 months later. The money in the envelope was duly delivered to its intended recipients, and there are some people who were not at his funeral. I have often gone back to the conversation in the oncologist's office on that July morning. Oncologists conduct end-of-life discussions with their patients every day. How does one tell the patient the truth without taking away every ounce of hope? Does every patient have to know that he is dying? I had never thought about the immediate consequences of what I say to my patients and their loved ones until I had to get my dad to the car and spend those eternal 20 minutes with him on the drive home. Bad news is difficult for those on the receiving end but no less so for those given the task of delivering it, especially when it concerns a terminal illness. There are some physicians who avoid telling their patients that their disease is terminal altogether. In not telling patients of the terminal nature of their cancer, are we protecting them or ourselves? And are we preventing them from being able to use the time they have left in a way they would wish with the knowledge that time is limited? There are those patients who cannot or will not talk about death. Knowing how much to say to each of our patients, and choosing the appropriate words, is an art. The task entrusted to physicians of giving bad news is both an immense privilege and a grave responsibility. My father received a brutal gift that day. But brutal as it was, it was a gift that enabled him to part, to make peace, and to prepare for his coming death. I have since had countless conversations with my own patients about their imminent demise. I constantly remember my father and that special Saturday. My memories are of tears, and of laughter, and most of all, of a sense of closure for the both of us. I hope that I am able to give my patients their truth in a way that will make it as much a gift for them, as it was for him. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Ilana Hellmann, who is an Attending Physician in the Hematology Department at Meir Medical Center in Israel. In this episode, we will be discussing her Art of Oncology article, "The Gift of Truth." At the time of recording, our guest has no disclosures. Ilana, welcome to our podcast, and thank you for joining us. Dr. Ilana Hellmann: Thank you for inviting me. It's wonderful to be here. Dr. Lidia Schapira: You've been on our show before, so let me just start by diving right into your beautiful article. It honors the memory of your father, a Professor of Statistics, who had an encyclopedic knowledge of the world and spoke seven languages and was known by so many different people. And you start by bringing us to the moment in the waiting room of the oncology department that was familiar to both of you because your mother had been a patient and you had very carefully selected the oncologist for your father. You say it was a July humid day, and his number is called. And then what happened? Dr. Ilana Hellmann: Well, as I wrote, all the moments that you've just repeated from the article are things that are imprinted in my mind as if it happened yesterday. My father passed away in 2014, and there are those moments and many others that I remember very, very clearly. It's something I hear from my patients also all the time. They remember exactly the day they received the diagnosis, the time of day, they tell me what I was wearing when I told them whatever it was I told them. And it's something that struck me that when I went back to that day and many other things that happened afterwards, I remembered every second. I think I knew what the oncologist was going to say in retrospect, but at the time, maybe I didn't think about it. It's very interesting that we as physicians, especially oncologists, we know exactly, but when it comes to family members, we're a little blind. And I've had this experience a few times since my mother passed away from cancer. My father and my father in law passed away just over a year ago, also from metastatic pancreatic cancer. So we know it very well. Dr. Lidia Schapira: Sorry. Dr. Ilana Hellmann: As I wrote in the article, I remember going in with my father. I remember the conversation, or at least the beginning part of it, but once the message hit home that, "This is what we have, the bottom line is there's not a lot we can do. We certainly can't cure your disease." I don't remember anything else that happened after that. Dr. Lidia Schapira: And you described the ride home after that. You mentioned that you felt your father had been fired, had been fired from anything that was perhaps curative or offered sort of some optimism, perhaps the conversation was a little deeper and supportive and offered some palliation. But what you took away was that this was awful. He was fired. Then you say the ride home was really difficult. Tell us a little bit about that. What was it like to leave the oncologist office as the sort of informed knowledgeable daughter who had just received this message? Dr. Ilana Hellmann: Exactly that. And I kept thinking in my mind, "How much do I say, what is he thinking? How much does he understand?" I was almost jealous, a little of people who have no medical knowledge. So much easier. Maybe it's not, but I think it's really tough for physicians as family members of patients who are unwell. But my father was, as I described, an exceptionally intelligent person, a real intellectual. He was enormous, not physically, but there was nothing he didn't know. You could ask him anything. He read the dictionary for fun. These are things that he liked to compare languages and cancer made him very small. And it was awful. It was just awful, awful to see. And that moment, it was very emphasized how small he was. He was just silent. There was just nothing, and I didn't know what to say. I felt absolutely helpless. And as I described, that drive is 20 minutes, maybe even a little less. It was endless. And I remember that I went home with him. It was lunchtime, and I dropped him at home and I went back to work. I think I had taken the day off, to- I didn't know what was going to happen with the oncologist, and I went back to work because it was easier to go back to work than to stay at home. And he was silent. He said nothing. And the next time I understood what he was going through was on that Saturday with everything that happened. Dr. Lidia Schapira: So fast forward to that Saturday, I imagine that you were busy with your children and your work, and it was easy to– I'm going to use the old fashioned word compartmentalize, put this aside for a little bit. And then on Saturday you're going in to say, "Hey, I'm going to take the children to the pool. How are you?" And he had a completely different idea of how you were going to find yourself spending the day. And I think that's such a powerful scene in the essay when you say that he started one by one asking you to dial his contacts, his friends, his colleagues and give a message. Tell us a little bit about how that felt and bring us to the bedside or to the scene if you can. Dr. Ilana Hellmann: So there's dad. He's in bed. He's got his morning cup of coffee. He lived with a full-time carer at that stage, who brought him some breakfast and a cup of coffee. At some stage, she brought me a cup of coffee. He was very, very focused. It was like I was an assistant, just doing what he needed so that he could talk to all the people he wanted to talk to. It was crazy. It was like watching something surreal. There were people he hadn't spoken to in 20 years that he called. He had no concept of what time it was in various parts of the world, so he woke people in the middle of the night. It was really quite something. People didn't believe me afterwards when I told them the story, and as I say, some of the conversations were very, very humorous. My father had a wicked sense of humor; very black sense of humor. So, there was lots of laughter mixed in with, "I'm dying, and I have cancer." Lots of humor, and there were a lot of tears, mostly on my part because my father was not a tearful type. He was emotional, but he didn't cry. But I remember being very tearful. I didn't know all the people. Some of the people were people I'd heard of when I was a child, all sorts of neighbors, people we'd lived next door to years before when I grew up in South Africa. And when he'd finished, he had this sense of- he was satisfied, "I've done what I had to do." And then he moved on. He had his list of things he had to do, the money he wanted to give to the ambulance workers, the people he wanted at his funeral, he didn't want to go to his funeral. It was typical of my father to do something like that. He planned everything. And it was like he'd had a box that he had to seal and tie a ribbon and it was done. And then he was finished and he was ready and he let go. It was amazing. It was beautiful. Dr. Lidia Schapira: When I read your essay, I felt that that was the gift he gave you. You have the word 'gift' in the title. But it's such an amazing scene for a father to be able to do, sort of a review of his life while he's still living. Instead of leaving you a box with all of his memories, he basically showed you and gave you this loving and exhaustive, comprehensive demonstration of what his life had been about. Dr. Ilana Hellmann: Absolutely. Dr. Lidia Schapira: And in some ways, some of the dimensions that he touched were the professional dimensions that perhaps as a child or a young adult he would not have been able to access. But you saw how big he was. What an amazing thing. Did you and he ever talk about that? What it was that led him to do that? Or was that just something that happened and you sort of both understood and just walked on? Dr. Ilana Hellmann: It was beautiful and it's certainly a gift I've been left with. There was the gift he got and the gift I got. It was a little intense. Six hours of calls was exhausting. I remember when my husband came home and I told him, he immediately poured me a glass of wine. It was very, very difficult and it took me a long time to go through. I had no time to recover from one conversation to the next conversation. And he just kept going. He had very little breaks during the day. There were a lot of people he had to talk to, and he wanted to finish it today. He thought he was dying next week. That's not what happened. He never spoke about it again. And that was quite typical of him. He was like, "What's done is done. I've said what I had to say." There were a lot of things that he said that I heard from the conversations that he had. And as you say, there were various gifts during the day that were told to other people but intended for me and for my younger brother who was not there at the time because he lived in England. But we never discussed it again. That was the way my father was. Dr. Lidia Schapira: You know when we, as physicians, tell patients who are sort of nearing the end of their life to say what they need to say to be prepared, this is exactly why, right? Because very soon after that, he had a seizure. He had brain metastasis. He might not have had the stamina or the ability to do what he did. So that is a very important lesson. I was incredibly moved by that scene, and I've probably read it a dozen times. You've probably thought about it a million times, but certainly this reader took a lot from that very beautifully described scene and so nicely told. So for the last few minutes, tell us a little bit about how this personal experience has impacted your delivery of news and your relationship with the patients. You start by telling us that often, as oncologists, we give bad news but then we just move on. But people live with this, people go home like this. How has that experience as a daughter impacted your delivery of news? Dr. Ilana Hellmann: Absolutely. There are a few parts of how it's influenced me. Somebody who read the article when I was writing it had said to me, "Wow, do all physicians have to go through these things to be able to identify with their patients or their family members?" Well, I hope not. It's a terrible thing to think of that each of us– On the other hand, there's no question that when you've been through something, you identify with the person in front of you if you know what they're talking about, you know what it's like to be a mother, you know what it's like to be a daughter. You know or you don't know what it's like to lose a parent or somebody else and the experiences that I had and I imagine anybody else have had with interactions with the medical community, with doctors, with the emergency room, with all sorts of things are things that influence the way I approach patients. So one of the things is true. I'm guilty of the fact that it didn't occur to me that I sit in my room, I see a patient and his daughter, his wife, his whatever, and I give them this news, and then I leave the wife to deal with him outside. Or the fact that when the oncologist said, "We haven't got curative treatment for you," and I didn't hear anything else after that. Well, we know that when we tell patients something not good, there's often no point in carrying on the conversation and talking about treatment and side effects and whatever because they're not there anymore. And that's something that I remember very clearly from that. You can't go with the patient, you can't go home with them, you can't get in the car with them, but you can remember it, think about it, choose your words carefully, maybe have a word with the spouse or the family member, whoever it is, as they're leaving outside the door, "If you need anything, call me." Maybe call them. Sometimes, I've seen that it's difficult, and I've called them the next day. That definitely has influenced me. I'm not sure there's a lot you can do about it, but I think about it. In terms of telling patients that time is limited, that you're not going to live forever, it's hard, and we want to give patients good news. It's so much easier to tell a patient that their PET CT is clear than that it's all come back and the prognosis is not good. So I try to understand where the patient is and how much they want to go. Most patients will lead the conversation. Most patients know to tell you how far they want you to go. And I've never been sorry about telling the patient that their prognosis is bad and that their disease is terminal. And I've had lots of return conversations from families after patients have passed on about the conversations they had, about the things that they did, about the fact that the patient decided maybe not to have more intensive treatment, went on a holiday, decided not to come to the emergency room with a fever or whatever it was, and elected to stay at home with hospice. I found that that side of oncology is no less rewarding when you have to accompany a patient on their lost journey. I've found over the years that it's actually no less rewarding than the patients who are cured. And then you see them once a year and they come and they say everything's good. Dr. Lidia Schapira: And that perhaps is part of what we call the art of oncology, which is the being in relationship, connecting with somebody, being a rock or a source of guidance for them when they're going through incredibly vulnerable times. I think that's not something that perhaps others recognize as being rewarding, but for those of us who are drawn to it, it can be incredibly rewarding. Thank you, Ilana. This is a beautiful conversation and such a lovely essay. I imagine there's a reason for this taking about ten years to process and write, because the impact is so deep, but you managed to do that. For that, all of the readers of JCO are grateful to you. So I thank you very much. Dr. Ilana Hellmann: Thank you. Thank you for taking it and publishing it. Dr. Lidia Schapira: So until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Ilana Hellmann is an Attending Physician in the Hematology Department at Meir Medical Center in Israel.
Oct 24, 2023 • 25min
Do You See Me?: A Candid Message from a Pharmacist to a Physician
In this podcast, Dr. Kristen McCullough, Hematology Clinical Pharmacy Specialist at Mayo Clinic, shares a pharmacist's perspective on patient loss and the challenges faced in healthcare. The podcast explores emotional conversations about resuming therapy, the role of pharmacists in patient care, and the importance of recognizing their expertise and emotional labor in the multidisciplinary cancer team.
Oct 10, 2023 • 32min
Buenos Días: A Letter to My Patient's Mother
Listen to ASCO's Journal of Clinical Oncology essay, "Buenos Días: A Letter to My Patient's Mother," by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. The essay is followed by an interview with Ruiz and host Dr. Lidia Schapira. Ruiz shares a poignant story of a pediatric oncology immigrant family, social determinants of health and similarities to her own family's experience. TRANSCRIPT Dear Gabriela, "Buenos dias," we said to each other in the pediatric intensive care unit. It was July of my first year of fellowship, and I was meeting you for the first time. From the start, you were there as a family unit, you and your husband supporting your two sons and each other. You were not new to the health care system or to pediatric oncology. But this was the first time you encountered a Latina, Spanish-speaking oncologist. When you heard me speak Spanish, I saw the relief in your eyes, a relief that I had seen before with my previous Spanish-speaking families. An immediate rapport was struck, fortified by our common language, cultivating an environment of trust. It stirred memories of the numerous instances when I accompanied my chronically ill grandfather to his medical appointments, often assuming the role of a medical interpreter for his care team and yearning for such a connection. I learned that your son had recently completed therapy for his first cancer, and because he (and your family) has a genetic predisposition to cancer, he required surveillance scans. That summer, his whole-body magnetic resonance imaging picked up an asymptomatic brain tumor. So, our lives became intertwined and I became your son's pediatric oncology fellow. I would never imagine the events that would follow in the next 4 years. I couldn't help but notice the similarities between our families. My family also immigrated from Mexico to the United States in search of better economic opportunities. They too primarily spoke Spanish and worked manual labor jobs earning minimum wage. They too had a genetic predisposition to a chronic disease (although not cancer), and because of this, they too saw multiple family members die at a young age. You told me about your brother who died in his 20s from cancer and how your father had a similar fate in his early 50s. Back then you didn't know that your family had a cancer predisposition. Perhaps the local hospital in Mexico where your family was treated didn't have the genetic tests, or maybe your family could not afford such tests. I never asked you. My maternal great grandfather also didn't know why he had end-stage renal disease at a young age in rural Mexico. Even if the local hospital did have the tests, my family could not afford them. Just like your family, it was here in the United States that my family uncovered our own genetic predisposition, but, in our case, it was to kidney disease. Sadly, knowing the root cause did not prevent early deaths. You told me about the events that led to your son's first cancer diagnosis. He was having leg pain and was about to turn 2 years old. You went to his pediatrician for a sick visit and routine vaccines. His leg pain worsened after the vaccines. Scans were ordered and unfortunately showed a tumor. You shared how in your mind the vaccines and the cancer were linked and how you worried about future vaccines. I listened to your worries and explained that vaccines did not cause his cancer. This reminded me of conversations I had with my own mother and aunts who would ask me medical questions: was it normal for a healthy young adult to have hypertension? What are kidney cysts? These early family experiences ingrained in me the importance of communicating in plain language and the responsibility we have as physicians of educating our patients and their families. I would later learn in my medical training that not all physicians learned these communication skills or prioritized them. Your worst nightmare came true when we found his second tumor, this time in his brain. You and your family prayed that it was a benign tumor relying on your deep faith in God. So, when I broke the news that it was a malignant tumor, it was far from a buen diıa for your family. Your son had a quick postoperative recovery, and we made plans that I would see him in clinic the following week to discuss his treatment plan. "Buenos dias," you said to me in clinic. You were there again as a family unit, both you and your two boys. We discussed the treatment plan in Spanish, and you asked thoughtful questions about the chemotherapies he would receive. I was impressed that you remembered side effects of medications from his previous treatment and that you learned to use the patient portal on your phone. I also noticed how you had mastered enough English to communicate simple things with the nurse or with the physical therapist, but you preferred to speak to me in Spanish. You son was well plugged into our large pediatric academic medical center and all the support that came with it. Our nurse navigators helped you coordinate multispecialty appointments. But I was acutely aware of what another subspeciality appointment meant: another day off work for your husband without pay, or if he did go to work, it meant you had to figure out transportation as you did not know how to drive, challenges my own family members experienced. So, we started outpatient treatment, and I saw you on a weekly basis. Your son tolerated his therapy exceptionally well and continued to have many buenos dias that you were grateful for. In between updating me on how your son was doing at home, your husband would lovingly tease you and make light of what I am sure was a very stressful situation. Your older son would also come to the appointments, and at one point, we ended up talking about school and going to college. I shared with him that I was the first one in my family to become a doctor and how important it was to work hard in school now, so later on, he could apply for scholarships, and one day, he could be the first in his family to go to college. I told him, "If I can do it, you can do it too." I could see his excitement in his eyes. At the end of clinic, you ended with "Muchas gracias doctora." Six months later, your son completed his therapy and began surveillance scans. You shared with me your anxieties around these scans. I tried my best to normalize your feelings. Thankfully, your son's scans continued to be negative for tumors and he continued to have good days. Every so often I would remind you about the importance of your own surveillance scans and you would nod your head. This was not new to me as I had taken on the role of reminding my siblings and cousins to schedule their annual health visits and have screening tests for kidney disease given our family history. A year and a half went by, and then during one of our routine visits, you told me that you were not doing well and that, in fact, you were having malos dias. I asked you what was going on, and you told me how you had gone to your local community hospital for abdominal pain and had been diagnosed with stage 4 pancreatic cancer. I was shocked. After updating me on your son and how well he was doing, you asked me a question that stayed with me, a question that my own family members had asked me before: "What is the prognosis for this?" You caught me off guard. I turned the question back to you and asked you what your oncologist had told you. You said they hadn't given you numbers and that you understood that a higher stage was bad. You looked at me with pleading eyes. I told you how my specialty was children with cancer and that I did not know the numbers for adult cancers. I encouraged you to talk with your oncologist more about this. Although this was during the first year of the pandemic, I gave you a hug. Although I didn't say it out loud, we both knew this was not going to end well. I called you the following week to check on you. I asked if you wanted my help to get a second opinion at the academic adult hospital next door. You explained that you were about to start therapy at your community hospital and that since you didn't have health insurance because of your undocumented status, you didn't want to pursue a second opinion at this time. I told you that if you changed your mind, I would be happy to help. I didn't hear from you for several weeks, and then I got a notification that your son had multiple emergency department (ED) visits. In his electronic medical record, I read that it was your husband who had brought him in for vomiting. I read in a note that your husband had told the ED team that you had recently died. I was in shock. I cried for your sons who were left without a mother and for your husband who would now have to learn to navigate the medical system by himself. Two weeks later, I saw your sons and your husband for what I thought was going to be a routine visit. I was shocked when your husband told me that child protective services had been called on them by the hospital social worker. He told me the story that instigated this call. Your older son, now a teen, was struggling to deal with your death. One afternoon, your husband asked him to take out the trash and your son had an emotional outburst and said some disrespectful things to your husband. Your husband reacted quickly and flicked your son's cheek. This story was shared by your older son to the social worker who made the report. My shock turned into anger, and I did my best to stay composed in front of him and your sons. I understood your husband's reaction, as respect to parents is a core value in Mexican culture.1 I wondered if the social worker understood this. Before I left the examination room, I told your husband that the medical system can be biased and warned him to be careful and know his rights. For my own extended family had experience with child protective services, several years back my young aunt, a first-time mom, lost custody of my infant cousin after an unwitnessed fall that resulted in brain injury. I wondered if the outcomes would have been different if she was white, wealthy, and well-educated. I would later learn in my medical education the disproportionality in reporting by race and ethnicity.2 Once back in the work room, I cried sad and angry tears. Sad that your husband had to go through this process and the added stress after the recent trauma of your death. Angry that I, the physician with the longest continuity with your family, the physician who spoke your primary language and understood your culture, was not notified before the reporting. Angry also that this system was yet again failing our most vulnerable populations. Knowing that when resources are limited, it is low-income, non–English-speaking families that usually get neglected first. Child protective services investigated and concluded that no major action was warranted. Thankfully, your son's surveillance scans continued to be negative. In the next couple of months, your husband learned to navigate the clinics, the ED, and the hospital. Unfortunately, language barriers made this navigation stressful, and more than once, miscommunication with ED doctors increased his anxiety about the possibility of recurrence for your son. I reiterated to him to call our clinic with any question, saying that I'd rather we answer his questions instead of having him worry weeks on end at home. Several more months passed, and your son was due for surveillance scans again. I got a call from the social worker that day notifying me that your son came with his uncle to his scan appointments because your husband was admitted in the hospital and that there was concern for cancer. This was completely unexpected as your husband was not the one with the family history of cancer. I called your husband later that day to give him the results of your son's scans (negative for recurrence and negative for new tumors) and to ask about his health. He told me of the weight loss and abdominal pain. He went to the same community hospital where you had gone and had scans that showed a mass in the colon. He told me he was about to be discharged and insisted on keeping your son's clinic appointment with me the following week as he wanted his son's g-tube checked. At the time, it seemed strange tome that he was hyper-focused on the g-tube instead of focusing on his own health, but in retrospect, I think the g-tube was something he could control during a chaotic time. I saw your two boys and your husband in the clinic the following week. I was shocked to see how your husband looked compared with our last visit 6 months ago. He was in a wheelchair, had lost a significant amount of weight, and looked like he had aged 10 years. He told me how his son, my patient, continued to do well. He was worried the g-tube was irritating him more. We ended up exchanging the size as he had outgrown the previous one. Then, he told me about his health, that the biopsy results were still pending, and that he understood the mass was localized. He shared how the preliminary diagnosis of cancer was disclosed to him: the doctor came in the room and abruptly said it was cancer in front of your older son without a warning. My heart broke when I heard this. Your older son lost you to cancer less than a year ago, saw his brother undergo treatment for two separate cancers, and saw his cousin lose his fight to cancer. He didn't deserve this. I held back tears, and I apologized for the fact that his family had to experience this poor disclosure. I worried about the care he was receiving at the community hospital, knowing cancer is the leading cause of death for Latinos in the United States and that social determinants of health have a role in this.3 I knew the odds were stacked against him. I reminded him that he has rights, including having an interpreter when talking to the medical team. Then, he said something that took me by surprise, "I need to get my affairs in order." I felt this was premature and also felt helpless as I desperately wanted to help your family. I told him he didn't know all the information yet, and if the cancer is localized, then the chance of cure is higher. He nodded his head. I asked if we could provide assistance in any way, such as coverage for transportation, but he declined this offer. At the end of the visit, he said "Muchas gracias doctora." At home, I cried for your family and questioned how one family could be so unlucky. I called your husband on a weekly basis for the next 2 weeks to check on him. I then went on service and was too busy to call, but the following week, I got an e-mail from the oncology psychologist stating your son and your husband missed a telehealth visit, adding no one answered the phone when she called. I replied that I had not spoken to your husband in over a week. A couple of days later, I got a call from your son's social worker, one of the Spanish interpreters had found out via Facebook that your husband had died. Almost a year after you died. I cried. I went to your husband's funeral. I cried for your boys who lost both parents in the span of a year. It was comforting to see that you had a lot of friends in the community who cared about your family. It was also comforting to hear that your cousin agreed to take in the boys. Gabriela, you and your husband did a phenomenal job raising your boys especially with the two cancer diagnoses of your younger son. Your son, my patient, was always happy in clinic, and that spoke volumes to the type of environment you created for him at home. Despite the complexity of navigating a large academic medical center, you did it with such poise. You were an extraordinary mother. Was it fate that our lives became intertwined so early in my fellowship training? Latino physicians in general are underrepresented in medicine,4 and the same is true for Latino oncologists in academic medicine.5 So, it was an honor and privilege for me to be your son's doctora. Throughout our encounters, I thought about how I would want my own extended family to be treated by their medical team, and I did my best to communicate, educate, and advocate for your son and your family. Your family reminded me of barriers low-income, immigrant, Spanish-speaking families face as they navigate the Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Jenny Ruiz, Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine. In this episode, we will be discussing her Art of Oncology article "Buenos Dias: A Letter to My Patient's Mother." At the time of this recording, our guest has no disclosures. Jenny, welcome to our podcast and thank you for joining us. Dr. Jenny Ruiz: Thank you so much for having me here. It's truly a privilege. Dr. Lidia Schapira: It's our pleasure. So, Jenny, I like to start by asking our authors what it is that they're reading now. Dr. Jenny Ruiz: Yeah. So I'm currently reading Lean In by Sheryl Sandberg as I'm new to a transition to a new institution. Dr. Lidia Schapira: Doesn't sound like a lot of fun, but I hope that it's useful. So let's talk a little bit about your work. What made you choose a career in pediatric oncology? Dr. Jenny Ruiz: I think my decision to go into medicine has stemmed from my extended family's interaction with the medical field. At the age of 18, I decided to be premed because I had an encounter with my grandfather, taking him to his clinic appointments after his kidney transplant and being asked by the doctor to interpret for him. I was at that time 17 or 18, and I thought it was a very interesting question that they were asking me. I didn't really think my grandfather would be telling me, his granddaughter, all his personal medical symptoms to then tell the doctor. Dr. Lidia Schapira: It's a huge responsibility that's often, I'm going to say, inflicted on children, and especially in this case, with your grandfather. You talk very candidly and openly about being in a family where there was a genetic susceptibility to disease other than cancer and your solidarity with your patient and their family for being an immigrant community and having this. Tell us a little bit about the years that you lived with the story. You cared for this child for many years before sharing the story so openly. Tell us about that. Dr. Jenny Ruiz: Yeah. I met this family my first year in the first month of my fellowship four years ago. At the beginning, he was doing so well. I mean, it was unfortunate he had a second diagnosis of cancer, but he did exceptionally well in the outpatient setting, really not having any admissions for all of that. And it was just beautiful to have that relationship with the parents, being able to speak the same language, being able to understand the culture, and seeing them kind of go through this all over again and seeing a little boy grow up. And it wasn't really until the last two years that a lot of the incidents that I describe in the story started happening. And so it definitely was a lot to kind of process it with the family as they themselves were going through all the trauma of having the parents diagnosed with cancer. And I think it definitely did take me a while to even after all of that, to put it down in the story and writing it down. I found myself oftentimes kind of writing a little part of the story and having to pause because of all the emotions coming back. And so I think I did that a couple of times across the country, across the world, honestly, little paragraphs here and there. Dr. Lidia Schapira: That's so interesting. Assuming, maybe reading into this, that telling the story, writing the story, helped you process something that was very personal, very challenging. Can we talk a little bit about this issue of language? You said that you've seen this look of relief on patients' faces when they realize that you speak Spanish and that you can communicate with them, Spanish in this case being the language that binds you to the patient. Tell us a little bit about that, how you view language and speaking the same language as your patient and their family. Dr. Jenny Ruiz: Yeah, I think we often take for granted that we're able to communicate with our doctors, our medical team, in our primary language. And it's very easy to overlook that there's a lot of immigrants in this country who don't have that luxury of being able to speak to their medical team in their preferred language. So I think one of the main drivers for me to go into medicine is to be able to connect with these families who speak Spanish, knowing that Spanish is my first language, and be able to really communicate in a plain language and explain it to them in a way that they understand and for it to be much easier to then see if they truly understand and check for understanding. I think in pediatric oncology especially, it's a very stressful time to be told that your child might have cancer and to be able to have that conversation in your preferred language, I think takes a lot of that stress away. Dr. Lidia Schapira: You talk about the fact that patients often feel relief and that it's easier to build rapport and trust, but I think there is something else that perhaps I read into or I wanted to read into it, which was warmth. I think that it's easier to convey that warmth or to understand each other a little bit better when there's concordance in language. So do you find yourself being assigned more of the Spanish speaking families as a result of your ability to communicate? Dr. Jenny Ruiz: I didn't really get that sense in fellowship. I mean, I think at one point they were asking for a volunteer from the fellows who needed to pick up another patient, and it just happened that the family spoke Spanish. I was like, "Of course!" I have found it very interesting in fellowship when I would be on call for some reason, every time or quite a few times that I was on call, it'd be a Spanish speaking family in the ED. And I loved going to talk to them. I might not be giving the best news to them, but the fact that somehow our timelines aligned and they would be in the ED, and I would be on call, and I would be that first physician to kind of talk about cancer with them. Dr. Lidia Schapira: That's such a beautiful sentiment that you express there. And I wonder if you can tell us or teach us a little bit about how you feel when you work with an interpreter for a language or a culture that you don't understand. Just something that happens to all of us in a society that hopefully welcomes immigrant families. Dr. Jenny Ruiz: Yeah, I mean, I think there's definitely a lot of skills to be taught in how to work with an interpreter. Again, using simple short sentences, positioning yourself as you are talking to the family, there's not going to be this three-way thing, trying to make that connection as much as possible. I think also noticing the unspoken words and the subtleties of the parent's face, the mom or the dad is very important, even with an interpreter, be like, oh, I noticed this. Is there something that you want to discuss more that made you do this? Dr. Lidia Schapira: And even using an opportunity to debrief with interpreters to make sure that we got it right. In your case in pediatric oncology, I think communication is even more complicated because you have the parent and the child and the interpreter. So tell us a little bit about your experience working with families where kids maybe speak English much better than the parents. You still need to communicate with the parents. I think that adds more challenges. Dr. Jenny Ruiz: Last year when I was a first year attending, I actually prepped a fellow with a talk with a Spanish speaking family with an interpreter. But the teenager's English was his primary language, so yes, he knew Spanish too, and the family wanted him to be involved in this discussion. So definitely a lot of more nuances there, a lot more emotions to be aware of, subtleties to be aware of, nonverbal communication that's happening. But I think honestly, we rely a lot on the parents to guide us in terms of: Do we want the child to be involved? How much information? Do we want to then say it differently for them at a later time or include them from the beginning? It's a lot of talking to the family and making sure that we are meeting their needs. Dr. Lidia Schapira: So what I'm picking up from our conversation is that you seem to be very tuned into the emotional part of the work. Let me ask this question, and that is: How do you take care of your emotions in these situations where there's so much at stake? Dr. Jenny Ruiz: Yeah, I mean, I think it definitely can be a very emotional career and certain instances can make it even more emotional and stressful. For me, it's been very important to have a very strong support system. I have my husband, I have my extended friends who are in the Northeast, have become another family for me. And I think, honestly, you know, prioritizing your mental health, whether that's doing your hobbies, whether that's going to therapy, have all been very important for me in this career. Dr. Lidia Schapira: I am delighted to hear you say that you are taking time for yourself and looking for things outside of work. That said, let me turn back to the relationship you developed that you describe here with Gabriela, the mother of your patient to whom the letter is addressed. You talk a lot about feeling strongly when you felt there were injustices or when they didn't have the proper access. Tell us a little bit about what that relationship was like and what it's been like for you when you find yourself advocating for families. Dr. Jenny Ruiz: Yeah, I think these strong feelings stem from seeing my family go through these same struggles and wanting the medical system to do better for immigrant families so they can have the best outcomes. I think oftentimes I find myself realizing I'm getting emotional or worked up and be like, okay, there's something going on here. I need to step back before I start talking to someone else about this, of what I want to happen or what I need to advocate for and really knowing that people will respond better if I stay calm and also kind of push back and in a professional way, ask questions, like, why is this happening? And if this is not our standard, why are we deviating from our standards? Dr. Lidia Schapira: So I know this is an early moment in your career. I mean, you're an assistant professor and just in the second year of a new job. But how do you imagine that this interest and this advocacy that you're so good at and feel so strongly about is going to impact your career going forward? Dr. Jenny Ruiz: I hope to continue to be a role model for trainees and faculty as I progress in my career, maybe I'll take on some leadership roles within the med school education system. Dr. Lidia Schapira: As you imagine yourself teaching, leading, and modeling behaviors, what are the most important messages that you'd like to convey to your students or peers? Dr. Jenny Ruiz: In pediatrics, at least ask the parents. Ask the family what language do they want to be communicated in for the medical information of their child? And then if it's not a language that you have been certified in to speak in, or are a fluent language native speaker, then get that interpreter. And then again the plain language and the short sentences. Dr. Lidia Schapira: So the health literacy and language preference for you are sort of intertwined, so to speak. So I'm curious, does your institution routinely collect that information, and do you ask every patient their language preference? Dr. Jenny Ruiz: I think there's definitely lots of room for improvement on how that information is being collected. I don't think it's being done in a systematic way. And hospitals are so large, everyone's doing it in different ways. When I was a fellow, I would be called from the emergency, say for cancer. I would always ask the emergency team, "Do they speak English, or am I going to need an interpreter for this?" And it's sad to say, to share that at one point they told me that the family spoke English and it went down there and then they're like, actually, no, English is not the primary language of them all. But we haven't been using an interpreter and I'm like, what is going on? Dr. Lidia Schapira: Yeah, I think that unfortunately, we've all been witnesses to such moments and it's sort of time for our culture to get this right. As we get towards the end of this lovely chat, let me ask if you've shared some of this with your family and how your role, perhaps as the early interpreter for your grandfather has evolved over these years in terms of your being at this position of being an expert now in medicine and perhaps a facilitator. Dr. Jenny Ruiz: Yeah, I definitely have taken on a role with my siblings and my cousins, kind of telling them the things I see in medicine and telling them why it's important to go to your annual checkup to get those screening tests because too often we see too many people just die too early, when it could have been prevented or a medication could have started early. So I think I've definitely taken on that role within my extended family. I hope that they kind of trust me and that little trust can then slowly build into a trust with their own medical team. Dr. Lidia Schapira: And if I may just dig a little bit more into this story, my last question is what did it feel like to go to the funeral for your patient's dad? Dr. Jenny Ruiz: I never thought that I would be going to a funeral for a parent. I thought I was going to be going for the child with the field that I had chosen. So it was definitely unusual. I had a couple of family members also pass away during my fellowship years, so it was a lot of reflection of the things that my family went through, things I saw with this family, a lot of similarities. So it's definitely been a very unique story that I felt like I needed to get down on a paper and share because oftentimes we don't hear these stories. Dr. Lidia Schapira: It was definitely a message that needed to come out. And we are so grateful to you for writing it, as you say, in little snippets in different times of your life from different locations. Thank you for that and thank you very much for agreeing to chat with me today. Dr. Jenny Ruiz: Thank you. Dr. Lidia Schapira: And to our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Show Notes Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Jenny Ruiz is an Assistant Professor of Pediatrics at the University of Pittsburgh School of Medicine.
Sep 26, 2023 • 22min
Playing by Eye: Using Music as a Parallel to Clinical Oncology
Listen to ASCO's Journal of Clinical Oncology essay, "Playing by Eye: Using Music as a Parallel to Clinical Oncology," by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. The essay is followed by an interview with Preti and host Dr. Lidia Schapira. Preti discusses the parallels in playing music by ear and clinical oncology encounters. TRANSCRIPT Narrator: Playing by Eye: Using Music as a Parallel to Clinical Oncology, by Beatrice Preti, MD The Yamaha keyboard in our cancer center is strategically placed. It rests in the center of the tall, lofty atrium, an open space that allows sound to travel and echo, creating an effect one might expect from a concert hall or a large-capacity theater. From their position, keyboard players cannot fully appreciate the music they create. In the middle of the atrium, any sound is flat, shallow, and short-lived. But, further away, and on the upper levels of the center, one can hear the music echo as the walls seem to vibrate with reflected sound. It is enough to pause one's step to listen, perhaps recalling some half-buried memory or latent emotion a song elicits. But on center stage, beneath the streetlamp-shaped light that feels all too much like a spotlight, the pressure is on. The keyboard faces half of the waiting room and the lobby Tim Horton's, which means, as one plays, one can see reactions to the music—including winces when fingers slip! Faces turn solemn and reflective during slower songs; patients, relatives, and health care workers alike dance and clap to faster-paced, popular tunes. Feedback and commentary are steady—about the music, the song choices, and, of course, song requests. I find song requests challenging; a combination of performance anxiety and only moderate competence on the keyboard affects the quality of the music that can be produced on demand, yet does nothing to eliminate the desire to fulfill a patient's request. Indeed, the request is usually the simplest part: Do you know Bette Middler's "The Rose"? A simple tune, one of my mother's favorites. But I haven't played it in years, since high school, actually, and the once-familiar notes now elude me. But the empty space after a request lingers awkwardly, and the hopeful anticipation from the patient and their family squeezes my heart like a vise. To break the pressure, I test out a few chords. Dozens of pairs of eyes stare down at me from all over the building. My hands start to seize. To freeze. Panicking, I hit a note. Seems okay. Then another one. And a chord. …that was supposed to be a chord. The eyes pin me down. I see disappointment. I hear whispers. They must be about me, that it's not as good as it sounded before, that I could do with some practice. I try again. Better. Another note. A broken chord. An octave. A melody emerges. Someone smiles. I think. Sweat soaks my shirt. Are we at the chorus yet? How much longer is there left in this song? Singing starts somewhere to my right, also a little out of tune, and it gives me the courage to continue on, although the experience is nerve-wracking enough to make me dread song requests—despite the apparent joy they bring. The solution, once considered, seems simple: practice playing by ear. It is impossible to predict who might be walking by on any particular day, but having the skills to reply to a request with at least a few bars of a beloved tune, thus brightening a face (and a day!), seems well worth the effort. Playing by ear, like most learnt skills, is more manageable when broken down into steps. The first step (or requirement, really) is a general familiarity with the song and a plan for how to approach it (fast or slow? Block chords or broken? Major or minor key?). Once this is determined, one begins with the first verse. The first time is usually rocky, and the mistakes are obvious. But, with luck, a familiar melody starts to emerge by the chorus. The music grows louder with confidence, and gauging audience reactions helps musicians see how close they are to the target tune and where they need to adjust. Playing by ear—or, perhaps, playing by eye, as it is the reactions which truly guide the musician—is an amazing skill, one which interestingly spills into more domains than initially anticipated. After several ear-practice sessions, I noticed a strange pattern in my clinics—the steps of a clinic encounter mirrored playing a song by ear! Prior to each encounter, I would consider the diagnosis and treatment plan, as well as a vague approach of how to handle the encounter, given the goal of the visit and the patient's journey thus far. Once inside the room, however, I began to alter this plan based on the patient's (and family's) responses, taking cues both verbally and nonverbally. Sometimes my words, tone, or gestures fell flat, and redirection was needed. Sometimes an unexpected reaction told me I'd just made a mistake, and I backtracked, trying again, paying closer attention to the reactions to ensure the second try was better. But, gradually, we (usually!) reached a steady state and manage to complete the visit on a strong note. Naturally, then, the next step would be to practice clinical encounters using these same steps, trying to take my clinical skills to the next level. Unlike a song, however, a clinic visit's stakes are higher—especially in the high-emotion field of oncology—and striking even a single mistimed chord could lead to disaster. I start small: awareness, noticing reactions I didn't before. There's the fullness in an eye before tears fall, the pallor of a clenched fists' knuckles, the subtle tremor of a shaking leg. I learn to call them out by name, ask about them: grief, frustration, fear. There is a pause, an empty space after such a direct question. A wide-eyed stare. My heart pounds, awaiting the verdict. Was my diagnosis correct? A misjudgment breaks rapport, but accuracy is rewarded with surprise, and opening up. Even family members look surprised, as details are elicited that weren't before. There is no singing along—cancer is not a beloved showtune. But as my skills grow, I find that not only are patients and families less tense during encounters—but I am, as well. I develop faith in my skills to read the room and alter my direction based on what I see. And, perhaps, the biggest clue that one has succeeded—on both fronts—is the heartfelt thank you that follows the encounter. This parallel has made me realize that every interaction between two people, just like every song, has its own beat. Its own melody. Is this fast or slow? Calm or anxious? Is this a happy exchange, or a sad one? The dynamics of the encounter influence the melody, and a misstep or misplaced word, like a note, can lead to dissonance. However, by listening to the song of the encounter and adjusting as appropriate, an astute individual can actually improve the interaction, maximizing the potential of the encounter, and allowing for a strong conclusion to the visit. It isn't easy work, to be sure, and, sometimes, the impact of the song can be hard to appreciate, especially within the confines of a four-walled clinic room. However, like the keyboard music in the atrium, the echoes resulting from one clinic encounter have the potential to reach far-reaching corners, echoing in ways previously unimagined, and lingering far longer than when the song ends. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Beatrice Preti, Adjunct Professor at Western University in London, Ontario, in Canada. In this episode, we will be discussing her Art of Oncology article, "Playing by Eye: Using Music as a Parallel to Clinical Oncology." At the time of this recording, our guest has no disclosures. Beatrice, welcome to our podcast, and thank you for joining us. Dr. Beatrice Preti: Thank you, Lidia. It's a pleasure to be here. Dr. Lidia Schapira: So I usually start by asking our authors to tell me what they're reading, but in your case, I'd love to ask you a little bit about perhaps what you're listening to or your favorite musical pieces. Dr. Beatrice Preti: Yes, absolutely. Well, I do love music. I play three instruments myself, so I have several YouTube playlists that, as I hear a song, I'll add different ones to. So one of them is retro tunes, like '80s, '70s hits that I know mostly from my parents. And then I have Broadway hits, musical hits because I love musicals and singing. And then I have a random one that has a lot of Taylor Swift, much to the chagrin of my colleagues because I will play that in the cancer center, not around patients, but my colleagues. Dr. Lidia Schapira: That's lovely. Well, I think Taylor Swift is a global phenomenon, is all I can tell you. Has music always been a part of your life? Dr. Beatrice Preti: Yes, very much so. I think- I started piano lessons formally when I was seven. Then I taught myself guitar as a teenager. And then once I hit medical residency, actually, my treat to myself was to start teaching myself violin. And I had the opportunity to take some lessons for a few years as well, which was absolutely lovely. But growing up, my mother loves music as well. She was a Sarah Brightman fan, a British singer. And we used to have her playing and my mother would sing. So I know all of Sarah Brightman's songs from the time I was a very early child, trying to pick those out on the piano as a young child as well. Dr. Lidia Schapira: So let's talk a little bit about how you bring that wonderful part of your life into your work as a physician and as an oncologist. Do you ever sing with or to patients? Do you talk about your love of music? Do you play music during your consultations? I'm curious all of a sudden. Dr. Beatrice Preti: Yes, absolutely. So I guess one way that I do bring it in is I have a little violin pin that I wear on the lapel of my white coat. It's a conversation point with many patients because the way I approach oncology is really to try to bring in a human aspect and get to know patients, get to know what they like, who's at home with them, what are their lives like outside the cancer center. And oftentimes people who are musically inclined will point to it, and it's a conversation starter, which can actually be quite relevant when we're talking about treatment decisions and such. And then I have the opportunity as well to play and go down in a cancer center. And, yeah, patients will sing and I will sing along with them as well. Dr. Lidia Schapira: So you speak of this with so much joy. Tell me a little bit about this piano that I imagine from your description, located in the center of a large atrium in a cancer center, and people just walk by and informally connect with you and they ask you to play, when do you play and how long do you play? When did it start? Dr. Beatrice Preti: When I started off in oncology, I was extremely shy. I still am. And one of my mentors, a cellist, who plays the cello found out about my musical inclinations and said, "Well, we need to get a piano in the cancer center lobby. Essentially, I can get Beatrice down there and start getting her more comfortable in front of groups, in front of people, in front of patients." That really, I think, was the rationale, but maybe on paper it's more to have something nice for the patients to listen to. And he actually got a piano donated or, sorry, an electric keyboard donated to the cancer center. We did have a piano a number of years ago, but unfortunately it was too loud with the acoustics of the center, so we needed something with volume control. There's actually a lot of keyboard, a lot of black keyboard that's down there now. And the first time I played was probably two, two and a half years ago now with my mentor, with the cello. I was very, very nervous. All these people were staring at you and all these people were looking at you. And I actually had a bit of a meltdown just before I thought, "Well, I can't do this. There's no way I can do this." But he coached me through it and it was the first of many things that he coached me through related to oncology, relating to overcoming your fears to try to help other people. And that's really how that started. And eventually I got brave enough to go down and play on my own and chat with the people down there. Dr. Lidia Schapira: That's a beautiful story, both of service and of mentorship. And to see both of these things come together. As you say, your mentor probably had two things in mind: helping the community of patients that you serve and also helping you build confidence, as you say. So talk a little bit about this confidence and this lovely metaphor, in a way. You talk about finding the right tempo or finding the right music to play to please somebody or to help them relax, bring them joy. And then you draw some parallels to how you use communication in the consultation room, taking your cues from people and knowing perhaps when to slow down or when to change the tone or the voice. Talk a little bit about that. It's fascinating to me. Dr. Beatrice Preti: Well, I think one of the things I struggle with in oncology, and I certainly know I'm not the only one, is that sometimes you feel very helpless. Because we do have wonderful drugs, we have wonderful therapies, I'm a medical oncologist, so drug therapies, but they don't always work. And sometimes, despite your best efforts, despite the best that medicine has to offer, you feel very helpless, and the outcome is not what you or the patient wants. So trying to find something that you can offer and that you can give, that's more than just a treatment or more than just a drug, that's essentially giving of yourself, what can I, as a person, offer to a patient? And I guess superficially, the music itself is something that you can offer. To give people even just a few moments where they can escape the cancer center and they can listen to something. And when I'm down there, I'll play a lot of these tunes and these kinds of things, where maybe it triggers a memory that somebody might have of a time and place that's quite different than the one they're in right now. But also, it helps evoke that human aspect that I think we touched earlier. And as you say, Lidia, and as I say in my piece, about trying to match the tempo, trying to match the rhythm, because conversations also have tempos and rhythms. Human interactions have variations and they have moods. And it's also practice in a way. If you can connect to someone through music, perhaps you can connect to your words as well. Perhaps you can connect with your actions as well. Much the same sort of strategy. Dr. Lidia Schapira: And you bring up a very important point, I think, and that's to play, as you say, you start by saying 'by ear', maybe no, but by eye because basically you're also taking in the visual cues that are coming from your audience. In this particular case, it's you're playing in the lobby, but in a consultation room from the patient and family and everybody who is there, and being very quick to take that into account and to redirect or make a change. And when you talk about that in the music, it's so easy to understand. And when you talk about that in the consultation room, that's such a skill. That's sort of where the art and the skill seem to go together. Can you say a little bit more about that or share with us some time or some anecdote where that really worked for you? Dr. Beatrice Preti: Honestly, I think the first thing that comes to mind is times when it didn't work. Sometimes, especially as a more junior learner, you only realize that the patient encounter isn't going well when it's really not going well. You really miss those early cues that a patient is telling you. That they're in distress, that they're not happy with what they're hearing. And it was, again with the same mentor observing me through several patient encounters and really deciphering it, saying, "Well, this is where– What did you think when they said this? And did you notice this look?" And no, I didn't notice this look. Well, he did, and maybe you can pay more attention. And I think it was actually when I was playing music that I really started to make those connections because down there, I'm playing by eye. I'm trying to watch this patient or this person - half the time, I don't know who they are - to see am I playing the tune that they want, and is it recognizable enough? Does it sound okay? Is it transporting them to that place where they're hoping to be and then bringing that into the clinic room and saying, "Okay, this is actually working. I can look at this person and I can figure out how this is going and try and adjust or redirect to really try and make this encounter the most valuable it can be for them and help them get out from what they need to get out ." Dr. Lidia Schapira: So Beatrice, what I'm hearing is an enormous sense of commitment to your patients. It's absolutely lovely. But I wonder if I can ask you a little bit about the flip side of that, and that is to reflect a little on perhaps how playing and sharing music reduces your stress or increases your sense of being well and being yourself and being more confident. Can you talk a little bit about that? Dr. Beatrice Preti: The bottom line is that when a patient encounter goes well, you also feel better because if it's not going well and people are upset, you will also be upset. So, again, very superficially, that's a good end goal to have. Dr. Lidia Schapira: That's right. Dr. Beatrice Preti: Music itself is very relaxing for me. Maybe when you're a small child and you have to play the exam pieces or you have to play what the teacher says, or what your parents say, it's not quite as much fun trying to learn everything. But now I'm at the point where if I hear a song or I see a song, I'd like to play the song, I can just do it. So it's very lovely that way. Of course, I have all my instruments at home, so even if there's a song that perhaps is not cancer center appropriate, I can just play it at home. I hope the neighbors don't complain and it's fine, but it's really fantastic, especially singing. So being able to sing with two of my instruments at least, I don't know. I'm sure there's violinists who sing. I'm not one of them. I don't have those skills. But with the other two, just go down into the basement. I have a microphone, I have a sound system and just get it all out. Get out all your frustrations, all the things that happened that day. It's very cathartic. It's a good release Dr. Lidia Schapira: Over the years, we've had a few essays in Art of Oncology that talk about music and how important music is for that particular author. And it's just so lovely to hear. So I want to end by asking you a very simple question, and that is, what is the song that is most often requested these days? Dr. Beatrice Preti: Oh, that's hard. That's hard. It really depends who it is, because I've played to different generations. I have a rendition of "Zombie" by The Cranberries that a lot of people seem to like, "Losing My Religion." But these days it's "Flowers" by Miley Cyrus, actually, I would say. Everybody seems to know that song. Dr. Lidia Schapira: Well, it makes me feel very old because I don't. I was hoping you would say something about these '70s or I'll be more comfortable with '80s or even with Taylor Swift, but I'll have to go listen now. So thank you. I want to give you the last word in the podcast. What is the central theme of your message as an author and as somebody who's sort of bringing this forward and putting this in front of the global community of oncologists, what can music give us? Dr. Beatrice Preti: Yes. Well, I think music and writing and words, which are a form of music in a way, they can help us remember, I think, the most important thing about Oncology, which is the human aspect of it. We're dealing with people who are frustrated, scared, alone, lost, in some of the darkest points in their lives. And it's a privilege to be able to serve and help these people through their journeys, but that's not always with drugs and treatments. Sometimes that's just with what we do or what we say, and that's a gift. But it's also a skill that needs to be developed and remembered. And having music is one of the things I think that helps me do that. Dr. Lidia Schapira: That's absolutely beautiful. So thank you very much for the work you do and for sending us your essay. And to our listeners, until next time, thank you for listening to JCO Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Beatrice Preti is an Adjunct Professor at Western University in London, Ontario, in Canada.
Aug 8, 2023 • 26min
When the Future Is Not Now: With Optimism Comes Hope
Listen to ASCO's Journal of Clinical Oncology essay, "When the Future Is Not Now," by Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin. The essay is followed by an interview with Retseck and host Dr. Lidia Schapira. Drawing on cultural history, Retseck explores a dying cancer patient's persistent optimism. TRANSCRIPT Narrator: When the Future Is Not Now, by Janet Retseck, MD, PhD The most optimistic patient I have ever met died a few years ago of lung cancer. From the beginning, Mr L was confident that he would do well, enthusiastically telling me, "I'll do great!" As chemoradiation for his stage III lung cancer commenced, he did do well. Until he got COVID. And then reacted to the chemotherapy. And then was admitted with pneumonia. And then c. difficile diarrhea. And then c. diff again. But whenever we checked in with him, he reported, "I'm doing great!" He could not wait to return to treatment, informing me, "We're going to lick this, Doc!" Of course I asked him if he wanted to know prognosis, and of course he said no, because he was going to do great. He trusted that his radiation oncologist and I would be giving him the absolute best treatment for his cancer, and we did. In the end, weak and worn out and in pain, with cancer in his lungs and lymph nodes and liver and even growing through his skin, he knew he was not doing great. But he remained thankful, because we had done our best for him. Our best just wasn't enough. While it can overlap with hope, optimism involves a general expectation of a good future, whereas hope is a specific desire or wish for a positive outcome. Research has shown that for patients with cancer, maintaining optimism or hope can lead to better quality of life.1,2 As an oncologist, I am in favor of anything that helps my patients live longer and better, but sometimes I also wonder if there is any real cause for optimism, because the odds of living at all with advanced cancer are just so bad. From 2013 to 2019, the 5-year relative survival rate for people with stage III lung cancer was 28%. For stage IV disease, it was just 7%.3 Immunotherapy and targeted treatments have improved outcomes somewhat, but the chances for most patients of living more than a couple of years after being diagnosed remain low. Even with our best treatments, there seems to be more reason for despair than optimism. Yet here was my patient and his persistent optimism, his faith in treatment to give him a good future, and my hope that he was right, even when I knew he was probably wrong. What drives this belief in a good future, a better future, in the face of such a rotten present? Optimism as a word and a philosophy emerged in the 18th century in the work of German thinker Gottfried Wilhelm Leibniz. As it was for my patient, optimism served as a way to negotiate the problem of human suffering. Attempting to explain how a perfect, omniscient, and loving God could allow so much suffering, imperfection, and evil, Leibniz argued that God has already considered all possibilities and that this world is the best of all possible worlds. Leibniz did not mean that this world is some sort of a utopia; rather, the God-given freedom to choose to do good or evil, and even our vulnerable aging bodies, are good in themselves.4 If my patient were Leibniz, his optimism about his cancer could be explained by an acceptance that everything happens for a reason, his suffering somehow part of a larger whole, selected by God as the best possible way to the greatest good. But while Mr L did take his diagnosis and various complications in stride, a belief that it was all for the best did not seem to be at the core of his optimism. Nor, in the end, did he reject his optimism, as the French philosopher Voltaire would have him do. Voltaire famously skewered Leibniz's optimism in his 1759 novel Candide, in which Candide, having been raised on Leibniz' philosophy, is kicked out into the cold, cruel world, where not just he, but everyone around him, suffers horribly and unremittingly, such that at one point, he cries, "If this is the best of all possible worlds, what must the others be like?" Whatever Voltaire's satire in favor of empirical knowledge and reason did to Leibniz's philosophy, it did not kill optimism itself. Scientific optimism, in the form of progressivism, the idea that science and our future could only get better and better, flourished in the nineteenth century. Certainly, life for many did improve with scientific advancements in everything from medicine to telephones to airplanes. With this brightness, though, came a deepening shadow, a tension heightened by the experience of chemical warfare and shellshock in World War I. Instead of better living through chemistry, science provided the means for horrifically more efficient death. The assimilation of science to the service of evil soon culminated in the vile spread of eugenics, racism, and mass murder. Like Candide, pretty much everyone in the 21st century must be wondering if we do not live in the worst of all possible worlds. And yet, when it came down to it, what else could my patient hold onto if not optimism that science would save his life? As I continued to reflect on Mr L's response to his illness, I realized that I had unconsciously already stumbled on Mr L's type of optimism, or rather its popular culture archetype. One day, when he was getting his chemotherapy in an isolation room due to his recent COVID infection, I passed by the glass window. I waved, and he waved back. Then, I put my hand up to the glass, fingers separated in the Vulcan salute. He laughed, and waved again. The scene, for non-Star Trek fans, is from the movie The Wrath of Khan. The Vulcan, Spock, too is in glass-walled isolation, dying of radiation poisoning, after having sacrificed himself to save the ship and its crew. He and Captain Kirk connect through the glass with the Vulcan salute, as Spock tells his friend, "Live long, and prosper." Later, Mr L told me that he had never been able to do the Vulcan salute and that he was not especially a Star Trek fan, though he had watched it years ago with his kids. But he loved this private joke we had, flashing this sign to me whenever we met, laughing when he could not make his fingers part properly. Star Trek epitomizes optimism for the future, arising as it did in the context of the Space Race to the Moon. Set in the 23rd century, Star Trek reveals that humans have finally learned the error of their ways: nuclear warfare, racism, and poverty are all things of the past, as are most diseases, ameliorated by the advance of science. In the world of Star Trek, medicine is, if not easy, then at least almost always successful. In one episode, the ship's doctor, McCoy, and Spock whip up an antidote to a deadly aging virus. Later, slung back to 1980s San Francisco in Star Trek: Voyage Home, McCoy, aghast at "medieval" 20th-century medicine, gives an elderly woman on dialysis a pill that allows her to grow a new kidney. In the world of Star Trek, cancer, of course, has been cured long ago. My patient's optimism is realized here, in a future that regards 20th-century science as "hardly far ahead of stone knives and bear skins," as Spock complains in another episode. Star Trek remains popular because, in spite of everything, there endures a deep desire for, if not the best, then at least a better possible world. I'm an oncologist, not a Vulcan, and when it became clear that Mr L was not going to "live long and prosper," I was frustrated and disappointed. His optimism could no longer sustain my hope. We were not in the idealized world of Star Trek, and I could not heal him with science and technology. Whatever the future of medicine might hold, our best possible treatments were still just "stone knives and bearskins." Optimism, whether his, mine, or that of science, would not save him. The only optimism that seemed warranted was not for the future, but in the future. At the family meeting to discuss hospice, Mr L sat in a wheelchair, weak and thin, on oxygen, wrapped in a warm blanket. As his family slowly came to realize that their time with him and all that he was to them—father, husband, bedrock—was moving into the past, he seemed to shift from a focus on the future to the reality of now. Gathering his strength, he dismissed their concerns about what his loss would mean to them with a sweep of his arm. Tearful, but not despairing, he instructed his children to support their mother and each other after he was gone. At the end, Mr L's optimism became not about his future, but theirs. His wish was for them to embrace living their own best lives as they entered this new, not better, future, a future without him. A few days later, I visited him in his hospital room while he was waiting to go home with hospice care. He was dozing in the bed, and I hated to wake him. Then he opened his eyes and smiled. We chatted for a bit, but he tired easily. As I prepared to leave, I tried to give him the Vulcan salute one last time. He shook his head and opened his arms. "Give me a hug!" he said. And I did. I would like to thank Mr L's family and the Moving Pens writing group at the Medical College of Wisconsin for their invaluable support. Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. With me today is Dr. Janet Retseck, Assistant Professor of Medicine at the Medical College of Wisconsin and the author of "When the Future is Not Now." Dr. Retseck has no disclosures. Welcome to the show, Janet. Dr. Janet Retseck: Well, thank you. Thank you for inviting me. Dr. Lidia Schapira: It's our pleasure to have you on. I like to start the conversation by asking authors what is on their night table or if they have a good recommendation for our listeners and colleagues. Dr. Janet Retseck: Well, I usually read three books at a time—one book of short stories, one book of nonfiction, and one novel. And right now I'm reading Elizabeth Hand's book of short stories, Last Summer at Mars Hill. I am reading Dr. Rachel Remens' Kitchen Table Wisdom because I work with The Healer's Art, and I found this book misplaced, and I thought, "Oh, my, I should read that." And I'm reading a novel called The Donut Legion by Joe Landsdale. And I bought this because I liked the title, and I am very hopeful that it involves a group of people using donuts to fight evil. Dr. Lidia Schapira: How interesting. I look forward to listening and hearing more about that. Let me start by asking a little bit about your motivation for writing this essay. I mean, we often write to process difficult experiences, and then what leads many authors to want to share it and publish it is that there is a message or that something was particularly impactful. And I was struck by the fact that you start by sharing with us that you took care of Mr. L, the patient, and the story some time ago, several years ago. So what about Mr. L sort of left a deep impression with you, and if there is one, what is the message and what drove you to write this story? Dr. Janet Retseck: Mr. L and I connected right away when he came to my clinic. At that time, he did have a curable lung cancer, but everything that could go wrong did go wrong. Yet he had a dispositional optimism. He always told us, no matter what was going on, "I'm doing great," just like that. When he died, I had a lot of grief around that. And at that time, I thought I would perhaps write about that grief and whether I had any right to that grief. And so I opened up a software that allows mind mapping, and I just looked at it last night in preparation for this interview. And on one side, it has all the things that I cared about and connected with Mr. L, and on the other, there's this bright purple line going with big letters "Do Better." Then I reflected again on our connection with the Vulcan "Live long and prosper," and how ironic it was that that's what one of our connections was. And yet he was not living long and prospering, and nothing about that over-the-top optimism of Star Trek had happened at all with all the medicine that I was able to give him. And that's where it came together. Dr. Lidia Schapira: Let's talk a little bit about that Vulcan salute. My digging around a little bit led me to understand that it was Leonard Nimoy who introduced that and that it's really a representation of a Hebrew letter, Shin. So how did you and Mr. L come up with a Vulcan salute? What did it mean to you? It's very moving how you tell us about it and what it symbolized. And so I just want to give you a chance to tell our listeners a little bit more about that. Dr. Janet Retseck: Well, there was a point during his chemoradiation when Mr. L developed the COVID infection, and radiation oncology wanted to continue with radiation, and he wanted to continue with chemotherapy. And everything we knew at the time, we felt it would be safe to do so because it's a pretty low dose. It's just radio-sensitizing. But anyone getting chemotherapy in our infusion center had to be in an isolation room. And this has a glass window. And I was walking past, and I saw him in there, and I kind of goofed around with him. The scene from the movie Wrath of Khan came to me, where Spock is in an isolation room, and Kirk connects with him through the glass. Spock is dying, and Kirk doesn't want him to die, and they give the Vulcan salute to each other through the glass. And of course, he couldn't quite do it. He knew what I was doing. He watched Star Trek in the past, but he wasn't especially a fan. But after that, that was our thing. Whenever he came in, he was trying, he was struggling to push his fingers apart. That was one of the ways we just connected with each other, to signal our affection for each other. Dr. Lidia Schapira: There is a lot of affection here. When I finished reading it, I read it several times, but I just thought the word "love" came to mind. There's so much love we feel for patients. We often don't quite say the word because we have these weird associations with love as something that's forbidden, but that's what this feels like, and that's the origin for our grief. I mean, we've really lost a loved one here as well. Mr. L sounds incredibly special, even in that last scene where he wants his family to imagine a future without him. So tell us a little bit about your reflections from what you've learned from and with Mr. L about how people who have really no future to live think about their own future and sort of their presence or their memory for those who love them. Dr. Janet Retseck: That's a very complicated question. For Mr. L. I think he was certain he was going to do well, that with all everything that we would be giving him, that he would survive and spend more time with his family and that's what he held onto. And I don't know that it was sort of delusional hope. We get every brand of acceptance and denial as oncologists. We have people coming in with their magic mushrooms, their vitamins, their vitamin C infusions. We have people going down to Mexico for their special secret treatments that have been withheld by pharmaceutical companies. We have people denying altogether that they are sick, coming in with fungating masses. But Mr. L was very different from that. His disposition was "Everything is good and it's going to be good, and I trust you 100%," and that's a big responsibility— is to take the patient's trust and to try to deliver on that. And in some way, my grief when he died was I could not do that in a lot of the ways the medicine world is at now. We break our patients' trust. Dr. Lidia Schapira: That's an interesting way of looking at it, and I sort of would push back a little bit on that. Dr. Janet Retseck: As you should. Dr. Lidia Schapira: Good. I'm trying to do my job here and say that you shared that you both were disappointed by the limitations of what current medicine can offer, and that's I think where you sort of spin your sort of philosophical and very beautiful reflection on the future. It is my understanding that that's where the title of this piece also comes, that you and Mr. L sort of could bond over his optimism and over the sort of futuristic view that medicine can fix anything until you couldn't. And then you both sort of adapted, adjusted, accepted, and again bonded in a very different way through the bonds of affection and support in presence. So I would not want your readers to think that your heart is broken because you disappointed him because you couldn't cure him, but that your heart is broken, if it was, because you had such affection and respect for him. I agree with you that he seemed to be well served by his optimism and it was working for him until it wasn't anymore. And I wonder if you could talk a little bit more about how you think about that optimism and hope and acceptance. Dr. Janet Retseck: Well, I should come clean and say I'm an optimist myself. I have to be, as an oncologist. Here we are starting at the very beginning with a patient, a curable intent, or is palliative intent, and we are giving these very harsh drugs, and I am optimistic I am going to do good rather than hurt the patient. And I tell them that right up front, this is what we hope will happen. Optimism really subtends to everything that I do, as well as an oncologist. So I don't mean to say we shouldn't hope, we should not be optimistic about what we can do now, but there's also that tension with the desire to do better always for our patients. Dr. Lidia Schapira: Janet, I was struck by your sort of teaching us about the origin of the word optimism. So, say a little bit more about what led you to go back to thinking about what the word actually means and how your patient illustrated this for you. Dr. Janet Retseck: Thank you for asking that. It was actually serendipitous because I had settled on the Star Trek motif for thinking about my relationship with Mr. L and Star Trek with all of its optimism about the future, and it just fits so well with Mr. L's disposition. And I thought I need to differentiate that from hope or wishful thinking or magical thinking because it is something very different. So I went to the handy dictionary and looked up optimism, and right there the first definition: optimism is a philosophy developed by Leibniz regarding the best of all possible worlds. In other words, this is the world that is the best possible one of all the possibilities, even with all the suffering and the evil and the pain that we have to deal with. And so I thought, well, maybe I'll learn a little bit more about this Leibniz. I'd heard the phrase 'best of all possible worlds' before. I did a little research and I found this wonderful article that I cite in my paper that described Leibniz and his optimistic science. And I thought, well, this is a real way in to thinking about Mr. L and putting into a larger context of optimism versus hope and optimism and its focus on the future. And really that idea of, not that everything that's happening to him is for the best, but it's the best. He got the best, and he very thoroughly believed that he was getting the best treatment, and he was. But my point was that even though it was the best, it wasn't enough yet. So where is that 'enough' located? And I think it is located in the future, but it's a future we can continue to hope for, and a future I think will come to pass someday. Someday we will not need to be oncologists, just like there don't need to be doctors who treat tuberculosis anymore. Dr. Lidia Schapira: So when my son was very little and he heard me very optimistically also talk about new treatments and so on, he said to me, "Mummy, the day that there's no more cancer, what are you going to do?" If somebody asked you the same question? What do you imagine yourself doing other than being an oncologist? Dr. Janet Retseck: Well, I guess I would go back to being an English professor. Dr. Lidia Schapira: Tell us more about that. Dr. Janet Retseck: Now, I have let the cat out of the bag. So that little Ph.D. next to my name, I've decided to embrace that - that is in English. And as many people may know, the job market in English is not fantastic. And I've always had a bent toward science and medicine. And when I discovered that it was possible to go back and get my sciences, in part through sheer memorization, I decided to do that. Because what better way to spend ten years of my life than learning how to be a physician? Dr. Lidia Schapira: So in the last minute of the podcast, tell us a little bit about your Ph.D. What is your area of interest, and have you taught? Are you planning to go back to teaching or are you currently teaching? Dr. Janet Retseck: My Ph.D. is more or less in Victorian novel and interpretation, and I taught for 16 or 17 years, mostly community college, some at the Claremont Colleges, mostly composition, and I am teaching right now. This is what I love, being at the Medical College of Wisconsin. It is like I hit a home run coming here because they have a very strong medical humanities program. And when I arrived here, I was directly pointed to the directors of the medical humanities, "Look, here's a Ph.D. in English!" And I thought, "You mean I can do something with this here in medicine?" And so I connected with Bruce Campbell and Art Derse, who were instrumental in bringing narrative medicine to the Medical College of Wisconsin. So I'll be teaching a class of that in narrative medicine in the spring, and I do everything I can to teach the medical students and residents and fellows here at the Medical College of Wisconsin as a VA. Dr. Lidia Schapira: Well, that was quite a surprise for me. I didn't know that. I knew, reading your essay, that it was beautifully written. Thank you. I was going to ask what your Ph.D. was in, expecting you to tell me something about some branch of science I know nothing about. But this came as a surprise. So I am so glad that you're doing what you're doing. I'm sure your patients and your future students really appreciate it and will appreciate it. So thank you so much, Janet. And until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcast. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experiences, and conclusions; guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Janet Retseck is an Assistant Professor of Medicine at the Medical College of Wisconsin.
Jul 25, 2023 • 26min
"Why Me?", a Question of Opportunity
Listen to ASCO's Journal of Clinical Oncology essay, ""Why Me?", a Question of Opportunity," by Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre. The essay is followed by an interview with Wein and host Dr. Lidia Schapira. Wein considers if patients are able to make rational decisions about their health when they are able to accept the reality of illness. TRANSCRIPT Narrator: "Why Me?", a Question of Opportunity, by Simon Wein, MD "Why me?" A question is an opportunity. It is also an invitation and a revelation. A question by its nature reveals something about the asker. When a patient or family member asks the doctor a question, the challenge for the doctor is to follow up the question diagnostically, then therapeutically, be the therapy medication, or talking. Some questions appear mechanical, such as "Will I be able to drive again?" while others are more obviously self reflective, such as "Why did I get sick?" However, even the most mechanically minded question may be fraught with emotional significance. A recent Art of Oncology poem entitled "Questions for the Oncologist" listed a litany of questions the doctor encouraged his patient to ask. All, except one: "But please, don't ask me that one thing./Don't ask, 'why me?'/You wouldn't like the answer. I don't." Later, the doctor-poet provided the answer: "Bad luck is a second-rate explanation, I know." The poem was sensitively, empathically, and thoughtfully written, apparently recalling an emotionally intense case. The poem reminded me of a patient I looked after some time ago and of a mentor past. An obese 60-year-old man came in. He was miserable and in pain. Ten months after definitive surgery and radiotherapy for lung cancer, the disease had returned with pain in his right chest wall. While awaiting full biopsy results, we irradiated the lesion and started nonsteroidal analgesics and duloxetine for the neuropathic pain (with the hope it might also improve his mood). Within 3 weeks, the pain had been significantly relieved although his misery was unchanged. We talked. He had been divorced for many years, worked in hi-tech, lived alone, and had lost contact with his two adult children. His parents had migrated in middle age, and he was an only child born in a new country. His parents struggled, and the family dynamic could be described as sullen. The family did little together and was silent a lot of the time. He recalls his parents, especially his father, as emotionally distant, involved in their own lives. Growing up he spent a lot of time alone. At university, he studied engineering and married his first girlfriend; however, the marriage fell apart as, in his words, "I did not know how to live together with someone else." In his sullen home life, he had not acquired the skills of building a family nor had he developed a coherent world view. Despite good pain relief, his sense of brooding and demoralized loneliness persisted. Underneath was a seething anger. He kept asking "why me?" I assumed at first that he was referring to the cancer. He was, but not only. I consulted with a mentor, and he said he often answered that question with: "Why not you?" I tried it. The patient was flummoxed. It pushed him to reflect. With further probing, over time, his thinking changed from a closed loop of "Why me," to "What is life asking of me?" And further afield he reflected on his childhood, his failed marriage, and estrangement from his children. Why did this happen to me? He shook off some of his depressed mood as he began to piece together his life's trajectory. In an insightful moment of acceptance he noted: "Indeed, why not me … What makes me special that I should not have the disease?" Sadly, there was no fairy-tale ending. He died alone. When a patient asks a difficult question such as "Why me?" or "How long have I got doc?" the psychologically astute analysis is, "Why and what does the patient want to know?" and "Why now?" Responding with the question "Why not you?" may sound harsh, even confrontational. "Why not you?" is designed to be challenging to shift the locus and focus of thinking from a passive and often ineffectual cry, "Why me?" Nevertheless might such a response appear insensitive and lacking empathy? Over the years, I have learnt that practically any question can be asked of a patient so long as it is asked for the sake of the patient, in an appropriate manner and in the right circumstance. In short, the questions must be empathic. Wiseman suggested the empathic response has four characteristics: to see the world as others see it, to be nonjudgmental, to understand another person's feelings, and to communicate your understanding of that person's feelings. Avoiding difficult and embarrassing questions may provide short-term relief but possibly sets the stage for later unresolved angst. I recently did a sabbatical in palliative care in Australia, a fair distance from the Middle East both physically and culturally. The openness and tempo of questions asked of patients and family in Australia might be considered brusque (or confrontational) and hope depriving in the Middle East. Although the influence of culture is pervasive, it is the individual who needs our help and who ultimately determines the conversation. Sometimes the individual is not open to talking therapy. It is an important communication skill to know when not to probe. "Why me" is both a deeply philosophical and a naive question. "Why me" addresses the question of justice and seeks an explanation on the assumption that ours is a rational world. However if a person thinks the world is inherently random, then such a question is naive and without intellectual value since everything is bad luck, like a random genetic mutation. "Why me" can be a profound philosophical question as the doctor-poet implied when he concluded: "Search for a better answer within, as I have. Unsuccessfully, so far."1 The "answer within" bypasses the issue of whether it is a meaningless world or a god-driven world. The "answer within" locates the responsibility within ourselves to try to make sense of what is happening with my life. An answer within suggests a philosophy that we can make sense and meaning of my life, despite the world's apparent carelessness or bad luck. Alternatively many people, especially here in the Middle East, hold a theological belief, and the question "Why me?" is resolved within the theology of their religious beliefs. The believers are, in a way, lucky. Patients who ask the existential question "Why me?" can be challenged to reflect on themselves. "Why not you?" is a probing question that, with skill and some luck, may enable a measure of acceptance: "Indeed, why not me" (Fig 1). Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Simon Wein, head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. In this episode, we will be discussing his Art of Oncology article, "Why Me? A Question of Opportunity." At the time of this recording, our guest has no disclosures. Simon, welcome to our podcast and thank you for joining us. Dr. Simon Wein: Thank you very much, Lidia. It's a pleasure to be speaking with you. Dr. Lidia Schapira: It is our pleasure as well. I'd like to start this conversation by asking our contributing authors to tell us what they're currently reading or if they have a book they've just read they want to recommend to colleagues and listeners. Dr. Simon Wein: So I recently picked up and reread The Count of Monte Cristo by Alexandre Dumas. I don't know if you've read it. It's a very long production because in those days they used to have a weekly chapter, weekly several chapters, and they didn't have WhatsApp and television and cinemas. And it's very long, but it's a wonderful read. I enjoyed it very much. The other book I'm reading now, more slowly, is The Nature of Natural History by Marston Bates. He is an American zoologist, and it's a wonderful read about his overall view of life, animals and plants, and I'm enjoying it very much. I have a great interest in gardening, and I think his views are very interesting. Dr. Lidia Schapira: That's wonderful. So let's turn now to your essay, "Why Me?" This essay starts as a conversation with an author who has published a prior work, a prose poem of sorts, in Art of Oncology. Tell us what it was about that read that sort of triggered you to want to respond and then clearly elaborate into what's turned into a beautiful manuscript. Dr. Simon Wein: I think what really grabbed me was the sensitivity of the oncologist as he was writing it, and the pain, it's a little bit strong, that word, but the difficulty he had in dealing with this fear that the patient would ask him, "Why me?" He wrote it so beautifully with such empathic sensitivity, that it really grabbed me, that question, "Why me?" that he was scared of. And it recalled for me, my mentor from many, many years ago, Dr. Wally Moon. And I remember as clear as yesterday, he'd say, "Patient asked me the question, 'Why me?' I'd ask him back, 'Why not me?'" So that's what it triggered off for me reading that essay, those two things. Dr. Lidia Schapira: Simon, you also make an interesting point that I want the listeners also to think about, and that is that a cultural context influences whether or not we feel comfortable even asking these questions, right? And you contrast your experience in a recent setting in Australia with your typical practice in Israel and the Middle East. Can you talk a little bit about that? Dr. Simon Wein: The older I get in this profession, the more I'm impressed by the importance of culture and yet how much we have to honor the individual and that ongoing tension between those two points of the compass. And I was brought up in Australia and sort of rather Anglo-Saxon and reserved in that way, and in Australia much less likely, in a sense, to be forthcoming and outgoing in what we want to say. And in Israel, people are much more open. And yet when we come to the consulting room in Israel as in other parts of the Middle East, indeed in Eastern Europe, a lot of the literature has demonstrated that we don't want to tell the truth straight out directly. And in Australia, on the other hand, even though it's a reserved society, people are straight out in the consulting room. Bang. They'll say, "This is the prognosis and this is what it is." So I've developed this model for my own thinking, is that in the West, the individual is the final moral arbiter of deciding ethical behavior, whereas in the Middle East it's more the family or, in a broader context, the culture. And so in Israel, you're much more likely to speak with the family, involve the family, or they'll come in and ask you not to say this to Grandma, and you have to make up your mind where the individual stands and where the cultural family influences. But from my point of view, I still think that the individual has to be honored and respected ultimately in the final decision. Dr. Lidia Schapira: Simon, I want to also ask a little bit about your style and your communication style with patients. You are so clear in your descriptions to address not only physical pain but emotional pain and suffering and misery, as you call it. How do you sit with a patient and try to draw them out in a way that is empathetic and respectful, but also to help them understand that you actually care? Dr. Simon Wein: I'll take you back to another mentor I had. That was Bill Breitbart at Memorial. I did a two-year fellowship in psychiatry psych-oncology there many years ago. As I said, I came from Australia. I was rather green in psychological terms, and I used to do rounds with Bill. And I remember this one patient I had with Bill, and it was a middle-aged man. He was a working blue-collar man. And Bill went up to him, we were asked to see him for depression, and Bill went up to him and started talking with him, and within 30 seconds he'd started asking about the tattoos on his arms. And I thought, wow, that's fairly personal to get into that. You only just met the bloke and you're already talking about that. And of course, from that I learned and with other experiences, that you can ask any patient any question so long as three conditions are fulfilled, and this is what I teach to the residents. The first condition is that it has to be at the right time. Sometimes you have to ask the patient privately and you ask the patient, the family, then to leave. It has to be the right you can't ask questions like this in the corridor, so the timing has to be right. The second thing, and this is I learned a lot from Bill and from my previous mentor, Wally Moon, you have to ask it in the right way. You have to ask with the right intonation. You could have said to that guy with the tattoos, "Wow, look at those tats. I mean, where did you get them from?" You know, that might have then made him shirk a little bit and stand back. Or you could have said, "Hello, Mr. Jones, goodness gracious, look at those tattoos you've got. They look very interesting. Do you mind telling me about them?" And so the way you ask. But I think the third condition for asking any question to any patient is that it has to be for the sake of the patient. It's not for me, it's not for anybody else. It has to be that in some way, this question will benefit the patient. The patient will respect that, they'll see that. And so I remember once I wanted to go and take a photograph of this guy who had these enormous hemangioma tumors on his leg. And I went in and I felt uncomfortable. And I realized the reason I felt uncomfortable was I was taking these photographs for myself, not for his sake. Eventually, I spoke to him and he agreed. He was agreeable for education and so forth. But I think those three conditions, the right time, asking it in the right way, in an empathic way, that's a key word, empathic or sensitive or charming or pleasant way. And for the third condition, for the sake of the patient, and I think that's really, really critical in being able to ask a patient any question. Dr. Lidia Schapira: That is such a thoughtful, beautiful answer. And I'm going to switch to another topic just because I want to pick your brain and I'm curious to know how you would handle this. And that is, I know you do palliative care and you've clearly trained in the psychological aspect of serious illness, but do you think, wearing your palliative care hat, that cancer is special and that cancer patients are a special population when they ask, "Why me?" Dr. Simon Wein: That's a really good question, isn't it? In our hospital now, I started off in palliative care about 15 years ago. For the first 10 years, we only did cancer patients. I'm an oncologist by training. But now we're opening up to non-cancer patients. I think that in society there's little doubt that the myth of cancer being the same as a death sentence is very strong. There are many patients with advanced New York Heart Association IV heart failure whose prognosis that is much worse than many of our cancer patients. But cancer has gotten this flavor of death, of Damocles' Sword hanging over your head and that's that, and it raises- immediately goes to all the existential questions of meaninglessness and emptiness and death and fear and loneliness and all that, much more than these other ones. And it's not true. Cancer patients today may live much much longer than we once knew and much longer than many other non-cancer patients. So I think there is something very special about that. And cancer has got this other horrific aspect about it which is that the body is eating itself up. Your own cells have turned against you. And I think psychologically, emotionally– Well, auto-immune diseases are not dissimilar in the sense of the body turning against itself. But cancer, it's a sense of the cells dividing and coming on and eating you up. It's got that mythical aspect to it. Dr. Lidia Schapira: And if I may add one more thing, in my mind, it's also that cancer treatment is so grueling and awful and sometimes actually exacerbates the suffering. So I think that it's cancer and the fear of consequences and exposure to cancer treatments, would you agree? Dr. Simon Wein: A lot of our patients come to us, but they won't say to the oncologist how tough the treatment has been. They don't want to sort of feel weak in front of the oncologist they don't want to give up on that chance of getting out of the cancer. Because if they say that to the oncologist, the oncologist might say, "Oh, you don't want to miss this chance, but you're not good. But maybe we take a break from the cancer treatment." But many of them are absolutely exhausted. Absolutely exhausted. And then the other aspect of that, not just the fear of the oncologist, but also with the family. The family are egging them on, and I often say to the family, "Listen, guys. Mom is very, very tired. You haven't got the treatment. You're young, you're well, you don't feel sick, you want to fight." The patient doesn't want to disappoint the family. The family don't want to disappoint mom. Nobody talks to each other and they have this dance of the macabre where nobody's talking to each other and the patient just keeps getting this treatment. I mean that's one of the things why I think it's worth confronting patients with the question, "Why not you?" If only to have some sense of acceptance of what it is. Now often in palliative care oncology, when you say acceptance, it means "Right, I accept I am going to die." But I don't see it like that. I think if you have a measure of acceptance, then it will enable you to make more rational decisions about your cancer care. I mean how rational can you be in deciding about the cancer? We don't know. The oncologist gives you 30%. Well, how can you interpret 30%? I don't know. So the rationality is limited. But if you're understanding of what's going on, I think it helps you make more rational- to have treatment and continue or not. So I think that's why it's a useful thing to try and do that. But some patients don't want to, and I just don't push it. And many is the time that I've said to a patient, "You know, this is very bad. You've got cancer." It's like they come back next week, "How's my virus going?" It's like 'It'll just pass and that's it," and so you realize that and you just continue on. Dr. Lidia Schapira: And so my last question to you, Simon, is this: as an oncologist, as a palliative care physician, as an expert in communication and psycho-oncology, what do you say to your oncology colleagues who have trouble responding to the question that patients frequently ask, 'Why me?' Dr. Simon Wein: Lidia, it's a good question because not often do I get a chance to speak to oncologists in this way. We're often kept out of the room, and when the decisions are made, it's very difficult to backtrack a decision about treatment. Very difficult. One, because you can destroy any trust that the patient will have built up in the system, and two, it's not really collegial then afterward to go and undermine. And so that's why I write lots of articles on these subjects, Lidia, and I hope that the oncologists will read them and I hope that they get published. I distribute them at work and sometimes the young ones will come and say, "You know, that's quite good." What we're trying to do, what I think is very, very important, is to have the multidisciplinary meeting. We're trying to develop that now. When I was in Australia, Peter Mac, we used to have them. And I think it's by a process of diffusion, by repeating the messages, the philosophy, the idea that we should ask the patient, get a picture from the patient of what's going on. Do they really want it? What's going on? What's important to them in life? Maybe they're satisfied with their lives. And then to have the balance between the side effects and the challenge of the treatment. The other thing that really gets me, got me on a bit of a hobby horse now, Lidia, is how much time in the last three months of their life patients spend on the road, coming to the hospital, doing blood tests, going home, another PET CT, another scan, and those are the last percentage of their life. It's substantial. So more and more we're actually doing telemedicine, as I'm sure you are. And at first, I was a bit skeptical about that, being an old-fashioned physician, where I think you should talk, touch them, see them, but you actually save a lot of their time and a lot of their difficulty and so forth. I think that's very good. Dr. Lidia Schapira: Yeah, both for us and for our patients, time is the greatest gift, right? And if we begin to think about it in those terms, time saved, time freed from hanging on to a test result, or needing to go and get another scan, can be an enormous gift for them as well. Dr. Simon Wein: Or an opportunity to live and enjoy life. And I say to every patient that every day you've got to find something to make yourself happy. I had this one patient the other day, the oncologist was mad. This poor guy's got a metastatic disease, his liver is not as good as it might be, and he was desperate to have a smoke of a cigar and a whiskey. And the oncologist said, "No, you can't do that because it could interact with your chemotherapy." And so I broke my rule and I said, "Look, the oncologist doesn't really know what he's talking about," and the guy promised to bring me in a cigar, which I haven't yet got. But anyway, I thought that was very sweet of him. Now I just like to say one more thing. If we're talking about therapeutic relationships, I think that the best lesson I ever learned and heard was from Irvin Yalom, from his book Existential Psychotherapy. And it's like 40 years since he wrote it, and a lot of paper has been printed, articles have been printed since then. But he really was very good. He said we have to relate to the patient like ourselves. We've got the same existential problems that the patient has, you know, empathy and all that, but we've got the same problems. Theirs are a little bit more contracted in time. And what I like to do with my patients is relate to them in an authentic, real way, a genuine way, and they'll learn from that relationship how to live their lives when they go home. And I thought that was a really, really beautiful thing. And so he's got a quote there, which I love to share. And it's that "The relationship with the patient is that which heals." It's the relationship that heals. And I think we shouldn't underestimate, and I think we do sometimes, the importance of the interaction and the relationship between the patient and the doctor. Dr. Lidia Schapira: It's a lovely way to end our conversation. Dr. Yalom is a colleague here at Stanford. He's in his 90s now, and he recently widowed. So that's a lovely thought and a wonderful teacher and mentor. So thank you, 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's shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Simon Wein is head of Palliative Care Service at the Davidoff Cancer Centre in Petah Tikva, Israel. Additional Reading and Podcast Questions for the Oncologist, by Barry Meisenberg Podcast Interview with Drs Meisenberg and Schapira on Questions for the Oncologist.
Jul 11, 2023 • 24min
But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care
Listen to ASCO's Journal of Clinical Oncology essay, "But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care," by David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. The essay is followed by an interview with Mintzer and host Dr. Lidia Schapira. Mintzer stresses the need for oncologists to make an effort to maintain relationships with patients as cancer care becomes more fragmented. TRANSCRIPT Narrator: But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care, by David M. Mintzer, MD (10.1200/JCO.23.00805) For the past 7 years, I have cared for Michael, a man with pseudomyxoma peritonei. He has undergone two aggressive surgical resections with hyperthermic intraperitoneal chemotherapy and endured multiple chemotherapy regimens, all of which resulted in questionable benefit. Recently, his health has declined due to progression of his cancer, and he has had frequent admissions for infectious complications, obstructive symptoms, and several fistulae. I had always been his attending on previous admissions unless I was away, but when I last saw him, he asked me why I had not been his doctor this time. Even before he asked, I felt guilty for not being there for him. For most of my career, I would see my own inpatients on a daily basis, rounding before, and sometimes after office hours. Currently, owing to system changes that likely have evolved with most practices and hospitals, only one of us sees inpatients on the teaching service, with the rest being off service. This happened long ago for our obstetrical, primary care, and other subspecialty colleagues, but for as long as possible, I held onto the belief that in oncology, we and our patient relationships were different. While most of the kerfuffle over the past few years in medicine relates to the electronic medical record and its effect on our lives and on physician-patient interactions, I think the fragmentation of care—while less frequently acknowledged—has been as relentless and impactful though more insidious. While most published articles on fragmentation define it as patients receiving care at more than one hospital, my focus is on the fragmentation of care within our own practices and institutions. Our patients are at their sickest and most frightened, thus most in need of us, when they are hospitalized. But now, instead of providing care with a consistent presence, patients are regularly passed back and forth from the outpatient to inpatient teams, then sometimes to the palliative care team, and then perhaps to a hospice team or, for those with the best outcome, transitioned to a survivorship team. While all these practitioners are kind and competent, they are not a constant. When I am covering our inpatient service, I do not know the detailed medical history of the majority of patients who have been cared for by my colleagues. Can I seriously be expected to know their complex oncologic and other medical issues, let alone their psychosocial needs, in any appropriate depth when I walk in on a Monday to start the week covering 16 new patients? I can be empathetic and do my best to communicate with their outpatient physician, but both emotionally and medically, it is never the same as being cared for by someone one has known and trusted throughout one's disease trajectory. Our relationship with the house staff is also fragmenting. We used to spend a month at a time as teaching attending, giving us a chance to get to know our students, interns, and residents. This has now been reduced to a week, and with our house staff rotating on an every 2 week schedule, we may work with a resident or intern for just a couple of days before one of us rotates off service. Furthermore, they spend much of teaching rounds staring into their smart phones and computer screens feverishly trying to complete their electronic workload. As practices have become larger and medical teams more complex, care has become less personal and often less efficient. If the patient calls with an issue or sends a message, it is notclear to them, and often to us, who will be assuming responsibility for their concern. Should it be directed to my administrative assistant, our triage nurse, the nurse navigator, the palliative care nurse, my nurse practitioner, an off-site call center nurse, or myself? The inbox proliferates; the toss-up for ownership of the message begins; six people now read what used to be handled by one or two. While I was an initial enthusiast for the early integration of palliative care alongside primary cancer care, I now also fear that it has further removed us from some of our most important interactions and deepest responsibilities. The inpatient oncologist used to be the one to provide symptomatic and supportive care and run the family meetings. Our house staff now routinely consults palliative care for even the simplest pain management issues, and we increasingly outsource goals of care and other serious discussions to our palliative care teams, who do not have a longstanding relationship with the patient or their family nor a complete understanding of their disease trajectory and past and future treatment options. Nor do I if it is not my patient and I am just the covering attending of the week. Too often it seems that palliative care has replaced us in some of the roles that used to be integral to our practice as oncologists, and we seem to have eagerly stepped back from some of these responsibilities. Our interactions with our colleagues have also fragmented. Mostly gone are the days when we would sit down in the hospital cafeteria with other physicians from other specialties for coffee or for lunch after grand rounds. And the days when we would review films with our radiologists or slides with our pathologists are mostly long gone. Our tumor boards provide some interaction, but since the pandemic, these tend to be virtual and less intimate. I mourn the loss of our sense of a hospital community. There have been some definite benefits to the fragmentation of care, which is why it has evolved and why we have accepted the bargain. As we increasingly subspecialize, we can get better and more focused on what we do which helps us cope with the explosion of data and new information across every area in our discipline. Some of us can devote more quality time to research, and it has also made our professional lives easier in some ways. How nice not to have to trek to the hospital to see very sick inpatients every day, but rather just a few weeks a year. How much easier to have someone else take charge of difficult end-of-life discussions. There is no point in bemoaning the loss of the old ways of more personalized care, as there is no going back. The current generations of physicians will not feel this loss of inpatient/outpatient continuity having grown up in an already changed environment, just as they will never have known a world before the electronic medical record. Patients have also accepted our absence from their bedside with less resistance than I would have expected, perhaps knowing from the rest of their care experience how depersonalized it has become—not that they have had much say in the matter. The changes in the delivery of health care will likely accelerate as we enter the medical metaverse and how we will navigate artificial intelligence while maintaining our emotional intelligence remains to be seen. The continued emphasis on increased efficiency and throughput of physician efforts—structuring medicine as a fragmented assembly line—runs counter to what is so meaningful to the physician-patient relationship—a function of time spent developing personal connections. As we continue our efforts to keep up to date with the rapid expansion of medical knowledge in our field, we also need to make equivalent efforts to maintain our personal and emotional connections with patients. As we have less frequent direct contact due to so much fragmentation of care, we need to make the time we do have with them more impactful. And sometimes that means going over to the hospital to see Michael after a long office day, although you are not on service. It is the right, human thing to do, and still gratifying—for all of us. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lydia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. David Mintzer, Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. In this episode, we will be discussing his Art of Oncology article, "'But Where's My Doctor?': The Increasing and Relentless Fragmentation of Oncology Care." At the time of this recording, our guest has no disclosures. David, welcome to our podcast, and thank you for joining us. Dr. David Mintzer: Thank you for the invitation, Lidia. Dr. Lidia Schapira: It's a pleasure to have you. I'd like to start these conversations by asking our authors if they have any books they want to recommend to listeners or if they're currently enjoying anything we should all know about. Dr. David Mintzer: Well, I just finished David Sedaris's most recent book, which is a series of essays. I get a big kick out of him. I think I often mesh with his sense of humor and a little bit of cynicism, a lot of truth, but heartfelt and always amusing. Dr. Lidia Schapira: I love his work. Thank you. That's a great recommendation, especially for the summer. So let's dive into your essay and your perspective, which is really such an important topic for us. You talk about the fragmentation of care and how it's impacted our practice, our relationships, and even our joy in the work that we do. Can you talk a little bit about your feelings about this? Dr. David Mintzer: Certainly. So I've been practicing medical oncology for a long time, about 40 years, so I've seen a lot of change. Favorably, most of that change is certainly in the good sense. We have so much more to offer our patients in terms of therapies that are more numerous, more effective, and less toxic. But there's been a price, I guess, to pay with those changes. We've all become more subspecialized, and the care has increasingly fragmented. And I was stimulated to write this essay because I've been disturbed to some degree by some of the changes. I think they are inevitable. I didn't want to write a piece just about how far I had to walk to school every day, uphill both ways, and complain. But I got a sense that others might have shared these observations and feelings, and I just kind of wanted to get them down. Dr. Lidia Schapira: One of the things that you said that really resonated with me is when you talk about patients being at their most vulnerable and at their sickest and most frightened when they're hospitalized, and that's when they need us. And what you say here, what I'm interpreting that you're saying, is that by not showing up at bedside, in a way, we're abandoning them. And that is something that feels terrible to us as well, those of us who really value that presence and that relationship. Can you talk a little bit about how you're dealing with that and how you see your colleagues dealing with that? Dr. David Mintzer: Well, it's a bit of a Catch-22. Yes. I think a lot of this is driven by guilt, by not being there for patients that we cared for sometimes for many years and know well. And although this happened in university hospitals a long time ago, in our hospital it was relatively recent, that it was recommended in part for house staff accreditation regulations to have only one attending on service at a time, which is understandable so as not to confuse the house staff. But in doing so, we're not there for our patients every day. And so you're kind of torn between running over to the hospital after a long day when you're exhausted and seeing your patients and fulfilling what feels like some responsibility, and also feeling that this is no longer my role, this is no longer the way medicine is practiced. It's not efficient. I don't get paid if I go over, someone else is collecting the RVUs. And in addition to that, the concern that the patients may not be getting not just the optimal emotional care, but even the medical issues. Certainly, the doctors covering are good and do their best, but they don't know these patients. They don't know their whole history, they don't know their complications in the past. That's the trade-off we make. Dr. Lidia Schapira: Let's talk a little bit about those relationships that we invest in so heavily in oncology. Oncology is different than many other fields and we've always valued the time we spend with patients and forming those relationships. Can you talk a little bit about how you see those relationships threatened when you as the oncologist and the person who's given them guidance for the entire trajectory of their illness can't be present just when they're at their sickest and most vulnerable? Dr. David Mintzer: So care of cancer patients certainly takes a village and we have tremendous support with so many different practitioners, including our nurse practitioners, our palliative care nurse practitioners, palliative care attendings, nurse navigators. But as we introduce all of these people, we actually have less direct contact time with patients. We're less likely to be the ones to call them on the phone or even answer their email. And one of the great things about practicing oncology is not just the science and what we can do for patients medically, but these bonds and relationships we form. It's been chipped away at rather insidiously, but I think rather steadily over 20 years. Medicine thinks it's so scientific and advanced and technological. But I always kind of reflect that we're probably 20 years behind every other industry, whether it's banking or going to the supermarket or the clothing store or the hardware store. You used to go to your neighborhood pharmacist and you knew him and he would give you advice or your hardware store guy would give you some advice about how to fix something. So those industries lost their personal relationships a long time ago. We're really far behind them, but we're catching up. So now everything is done more remotely, more on the phone, and as I said, there's less direct contact time, which I think we all miss. But we're different. We're different from going to your local banker or grocer or bookstore dealer. This is medicine. These are important medical events for patients. They're very emotionally fraught, they're complicated. And so what may be adaptable to other industries, even though it seems to be being forced upon us, is not as adaptable in medicine. Now, maybe there is some respite for this. I saw recent data that telehealth is going down. We thought telehealth was going to be here to stay with COVID and everyone was going to love it. And yet it's interesting, although it may be partly regulatory and partly because of the end of the epidemic, but I get a sense that both physicians and patients are a little bit less interested in it. I think that shows that we might be a little bit different from other industries, but we'll see how that plays out. Dr. Lidia Schapira: Absolutely. I couldn't agree with you more, but you talk about relationships also with trainees, for instance, that part of this fragmentation and these new schedules that we have also limit the contact you have with the house staff when you are assigned to be the doc on service. Perhaps you don't know all these patients very well, but you also bring up the fact that you don't get to know your trainees very well either because they're coming and going with different schedules. So what I took away was sort of a sense of loss, a bit of a lament that a lot of things are being lost in this super fragmentation. Can you address that a little bit, perhaps for our listeners? Dr. David Mintzer: Yes, I think that's exactly right. So the fragmentation that I describe is not just in patient care, although that's probably the most important to all of us, but the fragmentation with kind of the extended family that was our hospital community. We've gone now to a nuclear family. So if we're a specialist in one particular area, we still have kind of a nuclear family. But my sense is we've lost that extended family, meeting people in the cafeteria after ground rounds, dealing with other subspecialists. And if you're only in the hospital a few weeks a year, you just have less contact, passing people in the hallway, meeting them at conferences, reviewing films, as I said, with radiologists, reviewing slides with pathologists. We're all too busy, we're all sitting in front of our computers at lunch, we're all doing conferences on the phone, driving home from work, but we have less time with each other. And that holds also true for students and residents who now rotate very quickly. Dr. Lidia Schapira: Let's talk a little bit about one of the other points that you make in this very thoughtful essay, and that is that you say that you were an early enthusiast of the integration of PalCare, but now you find that certainly, the younger generation seems to be outsourcing symptom management and communication very early to PalCare. And as a result, perhaps from the patient's perspective, care becomes even more fragmented. And that's sort of a bit of a loss all around. We're not able to do some of the things that we enjoy too, in terms of family meetings and communication, but also everybody's becoming more deskilled. Talk a little bit about that. Dr. David Mintzer: Yes, I was an early enthusiast for palliative care, and I still am an enthusiast, don't get me wrong. You can't criticize palliative care. It's like criticizing mom and apple pie. But the idea was, and still is, of course, that you would work in conjunction with a palliative care specialist, that they would be called in, say, on the very difficult cases, cases that needed particular expertise, or to spend more time. And certainly, that happens, and I have tremendous respect for my palliative care colleagues. But what's happened, as you note, is that we've kind of outsourced it. It's much easier to have someone else have that difficult conversation, particularly if you're just covering a patient that belongs to someone else, you're just seeing them for a few days during the week, you don't feel comfortable in doing so. And so I'm concerned that we've abdicated our responsibility in many of these important discussions and left it to the palliative care team who, by the way, are overwhelmed because there aren't enough of them now that they are getting all these consults for almost everything. We should, as oncologists, still be able to run the meetings, to refer patients to hospice, to discuss goals of care. But as we all become more specialized, as we become busier, we have less time and we've built this metaphorical moat between our offices and the hospital, I find that we're just doing it less and less, and I feel some guilt about that and also some loss. Dr. Lidia Schapira: David, you say in your essay, we have accepted the bargain. What I hear from you today and what I read and inferred in reading the essay when it came to us, is that there are feelings of guilt, there's less joy, there's feelings that somehow this bargain isn't so good for us after all, even though at some level it makes our work a little bit more simple and our hours perhaps a little bit more predictable. So can we think together a little bit about what lies ahead and how we get over this deep ditch that we seem to be in? Dr. David Mintzer: Well, as you say, there's both benefit and loss involved with this and it does make our lives easier. If you're seeing relatively healthy outpatients month after month in the office, you get to feel oncology is not so bad and you can kind of put that two-week hospital rotation when everybody's in the ICU and having multiple unfixable problems and poor palliation behind you. So you can almost kind of go into denial. And it does make your quality of life easier to be able to just go to the office and go home most weeks of the year. How are we going to deal with this going forward? I mean, we do have to make the effort. I don't think it's going to go back. I don't think writing this article is going to change the way medicine is structured. This is a more efficient way and in some ways, it may be safer and more high reliability, which are kind of the watchwords. So I'm worried. I don't know where it's going. I think it is going to be a little less personal. But my point is we have to be aware of it and in doing so make the time we have with patients more impactful, be a little bit more aware of our need to support them. Maybe if you're not at the hospital every day, go over once or twice a week, or certainly when there's a big change in event. Dr. Lidia Schapira: Do you think we could use technology to sort of stay in touch and pay a social visit via FaceTime? Or remain connected to our patients, even if it is in a social function, but somehow, for their sake and for ours, remain connected when they're in hospice when they're hospitalized. But we're not the attending of the month. Dr. David Mintzer: Certainly, the way we communicate has changed. I remember being a young attending and I was working at a small community hospital, and one of the surgical attendings would just call their patient on the weekend on the phone, but wouldn't bother to come in. And I thought, my gosh, that's terrible. What kind of impersonal, awful medical care is that? But indeed, now, calling or more likely, texting, communicating, emailing with patients may work. What's coming with virtual or augmented reality or whether EPIC can eventually just plant a chip in our brain and we can all be online all the time, I don't know. But yes, any type of communication helps. I've often said that there's nothing like an unsolicited phone call to a patient to encourage them. Just, "Hey, you didn't call me, but I'm calling you. I was thinking about you. How are you doing?" So, yes, staying in touch by whatever means, I think can be greatly beneficial and mean a lot to the patient, even if it's a brief text or phone call. Dr. Lidia Schapira: Yeah, even encouraging your trainees if you have residents or fellows working with you to go with you to that unsolicited visit or participate in that, I think that sort of would model the kind of behavior that we would want if our loved one is the patient, right? Dr. David Mintzer: For sure. Dr. Lidia Schapira: And that's always a good question because what we hear from patients is how much they value and love their oncologists when there is a strong connection. So let's perhaps finish the conversation by going back to Michael, your patient. How did you and Michael resolve this? Dr. David Mintzer: Honestly, we haven't resolved it. So when he's in the hospital, he's now cared for by whoever's on service at the time. Fortunately, he hasn't been in the hospital lately, but I will make an effort to go over and stay in touch with him. Dr. Lidia Schapira: I'm sure Michael would appreciate your presence. Are there any other thoughts that you would like to convey to our listeners or readers? We have dealt with some of these futuristic issues in Art of Oncology before, including one essay I remember was published years ago where there was sort of this very impersonal imagining of what it would be like for an oncology patient to basically be seen by a series of robots along the chain without this human connection. And it was really terrifying to read. So thank you for reminding us about what is lost for us as well as what is lost for patients, something that we all need to go back and revisit, I think, as we think about the future. Any final thoughts, David, for listeners? Dr. David Mintzer: So as a physician who's getting close to the end of their career, I don't want to come off as just protesting against change. We need change. You know, change is crucial, but I think it's not really been clear to a lot of people how much this has been eroded over time - that our direct contact and the fragmentation has impacted us and our patients and other caregivers. And this separation between inpatient and outpatient, I think, is becoming steeper. Our palliative care nurses used to go over to the hospital and see the inpatients as well as the outpatients, or our physical therapists, or our nutritionists. Now everyone is divided. I still think it's a great job. I love caring for patients. I love the teams that I work with. And as medicine gets better, though, we just have to be on guard to stay in touch with our patients and our feelings. Dr. Lidia Schapira: I really appreciate your perspective. Thank you so much for sharing it with us. 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. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. David Mintzer is a Chief of Hematology and Medical Oncology at the Abramson Cancer Center of Pennsylvania Hospital. Additional Reading: Ars Brevis, by Dr. George Sotos
Jun 29, 2023 • 22min
Afternoons in the Tower of Babel: Miscommunication in the ICU
Listen to ASCO's Journal of Clinical Oncology essay, "Afternoons in the Tower of Babel" by Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminis Health. The essay is followed by an interview with Meisenberg and host Dr. Lidia Schapira. Meisenberg describes how oncologists and families of patients in the ICU lack a common language when discussing status and prognosis. TRANSCRIPT Narrator: Afternoons in the Tower of Babel, by Barry R. Meisenberg, MD (10.1200/JCO.23.00587) We talked for hours in that little windowless room adjacent to the intensive care unit (ICU) during his final week. A patient dying of a toxicity that should have been treatable, but is not. The oncologist's tasks: to care for the man in the ICU bed by caring for his family; to knit up the raveled opinions of the many consultants; to forge from these strands a family's understanding of status and prognosis; to be a family's ambassador in the ICU, while others toil to adjust the machines and monitor the urine flow; to make a plan that relieves suffering and preserves dignity; and to do all this not with brute-force honesty but with patience, gentleness, and humility. The reckoning process begins for a wife, three adult children, and a daughter-in-law. The youngest begins the questioning. "So, if our prayers were answered and the lung cancer is shrinking, why are we here? "It happens this way sometimes," I hear myself saying, instantly dismayed by my own banality. This is not a physiologic or theologic explanation. Its only virtue is that it is factual. It does happen this way sometimes, no matter how fervent or broadly based the prayers. I have wondered why it is so for more than 35 years as a student of oncology. But the quest to understand is far older than my own period of seeking. Virgil's1 Aeneas in the underworld observes: The world is a world of tears and the burdens of mortality touch the heart In the little windowless room my words, phrases, and metaphors, delivered solemnly, are studied as if they were physical objects one could rub with the fingers or hold up to the light like Mesopotamian pottery shards with strange carved words. My word choices are turned inside out, and compared with yesterdays', I can see the family struggling to understand; they are strangers in a strange land. How lost they must feel, barraged by a slew of new terms, acronyms, and dangerous conditions. The questioning resumes. "Explain 'failing,' explain 'stable,' explain 'stable failure,' explain 'insufficiency.'" My first tries were themselves insufficient. I try again; choosing carefully, using different metaphors: -the heart as pump, -the bone marrow as factory, -the kidneys as filter, -the immune system as … a loose cannon. -the lungs as collateral damage The soon-to-be widow restates my phrases to see if she has it right. Worn down by the exercise, I nod. Close enough. Daughter-in-law, following carefully, is quick to interject, "But yesterday you said the X-ray is 'unchanged,' so why does he need more oxygen?" Did I say that? Yes, the notebook in her lap remembers all. "You say now 'rest the lungs' on the ventilator, but last week, still on the oncology floor, you said get out of bed and work the lung as if they were a muscle." Carefully, I unwrap more of our secret lexicon: "Proven infection" versus "infection" "Less inflamed" is still dangerously inflamed. Five sets of eyes, five sets of ears, five sets of questions. And the notebook. I begin again, choosing carefully. The learning is a process and occurs incrementally. I tiptoe around acronyms and jargon. I assemble the words and metaphors to build understanding. This is part of the oncologist's job; at times, the most important part. But words are not all the tools we possess. There is also the language of the body. The grave subdued manner, the moist eyes, and the trembling voice, none of it pretend. The widow-to-be slowly absorbs these messages in a way that she cannot grasp the strange wordscape of the ICU. With time, understanding drips in, and the wife makes the difficult decision that all families dread, but some must make despite the fear. And tears come to this anguished but gracious family who manage, amid their own heartache, to recognize the dismay and bewilderment of the oncologist who used the right treatment at the right time but still lost a patient. The family sensing this offers to the doctor powerful hugs and the clasping of hands that opens their own circle of pain to include one more in search of why. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Barry Meisenberg, who is Chair of Medicine and Director of Academic Affairs at Luminis Health. In this episode, we will be discussing his Art of Oncology article "Afternoons in the Tower of Babel." At the time of this recording, our guest has no disclosures. Barry, welcome to our podcast, and thank you for joining us. Dr. Barry Meisenberg: Thank you for having me. Dr. Lidia Schapira: Barry, let me start by asking you my now famous question: What are you reading now and what would you recommend for our listeners and readers? Dr. Barry Meisenberg: I will tell you that, for a very special reason, I've been reading Thomas Wolfe. You know, the author of Look Homeward, Angel, and his final book everyone knows the title of You Can't Go Home Again. But I've been reading them with a very specific view. I'm interested in all the medical interactions and I find them immediately relevant to what I'm doing. And Thomas Wolfe talks about physicians treating dying patients. And the good physicians are also really caring for the family. And there are a couple of just wonderful examples. Would you like me to read you one? Dr. Lidia Schapira: I would love it. Dr. Barry Meisenberg: So this is from Look Homeward, Angel when Tom's beloved older brother Ben is dying from post-influenza pneumonia. And part of his family just can't understand it. They can't get used to it. And they keep insisting that the local physician do more. And this doctor who's Dr. Coker in the book, that's not his real name, of course. And he says to the sister, who's pretty close to hysterical. He said, "My dear, dear girl, we can't turn back the days that have gone. We can't turn life back to the hours when our lungs were sound, our blood hot and our bodies young. We are a flash of fire, a brain, a heart, a spirit, and we are three cents worth of lime and iron which we cannot get back." And I say this that as we learn when we're in the ICU, we see a patient in the bed and we think, "end of life" and families look at that patient in the same patient, the same bed, and think of the young person, healthy lungs and strong desire for life. And we don't always see the same thing. And I just thought that piece of advice by that doctor was wonderful. Dr. Lidia Schapira: That's beautiful. Thank you so much for sharing that with us. Dr. Barry Meisenberg: Thank you. Dr. Lidia Schapira: This is a very special piece. And the first thing that I wanted to ask you about is how did you choose the title? Dr. Barry Meisenberg: I feel, as the readers will appreciate, that we often struggle to communicate with families because of the jargon and of the strangeness of the environment. And although the Tower of Babel is obviously a biblical reference where God punishes humans by scattering their languages so they can't communicate with each other, in the more sort of vernacular sense of that word, it just refers to a failure, an inability to communicate openly. And I think that's what this article is about. Dr. Lidia Schapira: Let's talk a little bit about what the article is about. I read it as a very moving reflection, very sincere reflection from an oncologist who is heartbroken because he's about to lose a patient to complications of therapy. Help me understand a little bit about your message and how you wanted to communicate the importance of choosing the right words when the message is just so dire. Dr. Barry Meisenberg: It's actually two themes. You mentioned that sometimes when you choose the right therapy at the right time, at the right dose, and bad things happen anyhow that aren't supposed to happen, we take it very personally. And the second theme here is then our role as oncology, which I believe is at times the most important role we have, is to explain this strange environment to sometimes the patient, but also the family. And that means being aware of all the acronyms we're using and the jargon. Knowing that there are other physicians who they may have talked to who will say one thing and be seized upon one little phrase by the intensivist, by the nephrologist, by all our other colleagues. And feeling that it's our job, my job to wrap all those opinions together and to explain what it really means because they're all partial views. Dr. Lidia Schapira: And also to provide guidance for the family. At one point you needed to explain, but also help the family come to a decision, which is a very difficult decision, and that must have felt very bad for you in a very, very difficult situation in a windowless room next to the ICU. Dr. Barry Meisenberg: Again, I think it's actually our job. Our job is not just to write chemotherapy orders and order images. Our job is to care both for the patient and make sure the end of his life, in this case of his, is dignified, but also to care for the family, knowing what they're experiencing at the moment and what they'll experience after the death. I'm honored to do it. Some excellent intensivists can do this well. But I also think it's my job to do and I think it's important to teach young physicians that's their job. Dr. Lidia Schapira: So let's talk a little bit about that because I think for perhaps our generation and for more senior oncologists this always has been part of the job and we've always understood that it's our responsibility to be present. To be present as you, I think you use the word as an ambassador in some ways. To reconcile what they're hearing from other people, to provide a framework for understanding what has just happened, and to get past the technicalities of the information and the words written down in the notebook to really tell the patient and the family and comfort them to understand where they're at. But it's not the way many of our colleagues today view the job. Can you reflect a little bit on that? On whether or not it's really the oncologist who needs to be at the bedside to explain this? Dr. Barry Meisenberg: Well, by way of background, I am PGY 40, I think that's about right, PGY 40 of people of my generation. So I don't know if it's strictly generational, but I do have a whole view of an oncologist, holistic view, as opposed to a partialist view where we don't go into the hospital, we don't do end-of-life conversations in a hospital. We let the palliative care team do that or let the hospitalist do that. I just think it's not good for patient care. It's also not good for the oncologist because this is why we are viewed as a special breed of physician because we can do this. Other people are afraid of it. They don't like to deal with death or bad outcomes or bad prognosis. And we do it in our routine and people honor us for that. And so if we have a new ethic about this that "Let the intensivists do that or let the palliative care team do that," we're losing what makes, part of what makes us special. Dr. Lidia Schapira: That's a very interesting thought when we'll hold and probably need to come back to it and reflect over the course of the day and the next several days. Let me go back to the scene that you give us in this beautiful essay. And you talk a little bit about the notebook, which I found very interesting, where I think it's the daughter-in-law of the patient is carefully recording the words and she's picking up on some what she sees as inconsistencies. Wait, yesterday you said, or last week you said "Get out of bed," and now it's, "He can't." You used this word yesterday, but this word today. Dr. Barry Meisenberg: Right. Dr. Lidia Schapira: Can you share with us a little bit about how you react in those situations? Because I was just sort of feeling the frustration of trying to say, "You need to drop the pen and we need to just think about what's happening here." Dr. Barry Meisenberg: What you're referring to is this section, when the questioning, when our words are carefully examined, held up for review. Normally, I'm happy to have families write stuff down and record their questions, but if last week I said "stable" and today it's some other term to describe it, well, it is an apparent discrepancy says the notebook. And yeah, a week ago it might have been appropriate, "Get out of bed, get those lungs working." And here we are five or seven days later, and he's on a ventilator because we need the lungs to rest. So explain that and it's in the notebook. Explain this apparent discrepancy, or another physician said he's doing good, meaning he's not progressive. And I'm saying "You've still got respiratory failure." Failure is a powerful word, by the way. You've got to be careful when we describe heart failure, respiratory failure, bone marrow failure. So this is, whether it's the memory or the notebook, I don't consider it an enemy, but it just shows you how careful we have to be in what we say. And what we can communicate in 15 seconds to a colleague takes much more time, and you really have to use metaphor to explain that. Dr. Lidia Schapira: So let me pick your brain a little bit. You describe yourself as a PGY 40, and maybe that's literal, maybe it's not. But as an experienced clinician, what advice do you have for some of the junior oncologists about how to sort of feel perhaps when they're being challenged in a difficult situation and how to choose their words and sort of cultivate that way of being with, that presence that can really bring comfort to families? Dr. Barry Meisenberg: That's a great question, and I just hope that we would all approach this with empathy to try and understand what the family is going through. And the article tries to bring that out, that there's a family struggling in a strange environment. And our patients and families may be very accomplished people, but now they're in a new environment that they can't control, they don't understand, so let's care about them as well. And I never take it personally, someone's challenging my advice or my knowledge. That's almost like expected. So that's how I would try and explain our role there. This particular family wasn't difficult in that way at all, and I hope that didn't come across that way. They were just very concerned and wanted to know and wanted to be educated and looked to me to provide that in a very respectful sort of way. But we certainly have had other families who insist that obviously there's something else better someplace else and some knowledge beyond what I bring to the table. But once again, what you just sort of care- I guess the best word is empathy or compassion for what they're going through. Dr. Lidia Schapira: Barry, if you can bear to share this information, is this a patient who died of a complication of immunotherapy? Dr. Barry Meisenberg: That's exactly right. Lung cancer, smoking history, got immunotherapy. Excellent clinical response until interstitial pneumonitis. So like a more than 50% response to the initial, I think just one cycle. And then though, the symptoms of dyspnea and progressive respiratory failure ended up in a hospital and other complications along the way, heart attack and whatnot. So it is based on a real patient, although the conversations are based on accumulated experience. But it was an actual patient and we knew it early, we used high-dose steroids early, and it just didn't seem to make a difference. And then second-line, third-line, therapies, many of your readers will know that these are all sorts of anecdotes, and one of them was tried as well, but just progressive respiratory insufficiency in a way that just like everything else, when there's a response, we don't really fully understand why some people respond and some don't. Dr. Lidia Schapira: And how do you deal with and how have you learned to deal with the grief that follows losing a patient, especially under these circumstances? Dr. Barry Meisenberg: Yeah, I don't know that I have learned how to deal with it. I mentioned in the article that I was welcomed into the circle of grief by this family who appreciated what I was feeling. Somehow it's kind of remarkable that some people do that. Some grieving people can understand others are grieving. So I don't really think that I've got a solution other than this sort of banal notion, as I mentioned in the article, that it's always been this way. Bad outcomes, bad things happen, and maybe it's the way of the world. I would feel differently if I had missed something, perhaps, but I grieve, I but don't blame myself and ready for the next patient next challenge. Dr. Lidia Schapira: I always think it's wonderful when we are the recipients of such amazing compassion from families and those moments really sort of, in a way, rekindle our vocation and our ability to sort of recharge a little bit, to be present for the next family. I wonder if writing about it in a way helped you process this experience. Dr. Barry Meisenberg: Oh, I think it absolutely does. And I'm so happy that this journal and this society gives us this opportunity and other journals as well. Because processing, which I guess is a modern term, is so important for us. There's a whole interest in reading things of this nature, not overly saccharine and not overly stereotyped because it doesn't always work out that way. But I absolutely feel that we're a brotherhood and sisterhood, and we need to share with each other because these are things we all go through, which I believe is the whole purpose of this section. Am I right? Dr. Lidia Schapira: You're absolutely right. And you sort of anticipated my final question, which was, as a community, I certainly feel we need these stories and we need to share these stories. But I may have asked you this question in a prior conversation, but can you tell me how you use stories in your career for teaching or for sharing experiences, or reflecting with colleagues or trainees? Dr. Barry Meisenberg: I think they're a great opportunity, and obviously we want to encourage young people and medical staff of all ages to write their own and share. But we have a program specifically for residents and trainees where we look at some poetry or very short essays, some of the journals about these kinds of issues, and then reflect. One of them for example is how do you overcome physician errors, and a whole set of readings and poems about errors that have been made and how they linger with you your whole career. Someone wrote a beautiful line, "worn smooth by mental processing," because in general, we don't give them up. So these kinds of things I think are very helpful in reflecting and helping people understand that this is something we are all going to have to face and we're all going to have to deal with in our careers. And you can't hide it, you're going to deal with it so we can't hide from it and it is an effective coping measure. Dr. Lidia Schapira: Well, thank you so much for sharing your thoughts. My heartfelt condolence on the loss of your patient. Dr. Barry Meisenberg: Thank you. Dr. Lidia Schapira: And keep writing. For our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Barry Meisenberg is Chair of Medicine and Director of Academic Affairs at Luminis Health. Additional Publications: Questions for the Oncologist, by Dr. Barry Meisenberg and accompanying podcast.


