Episodios

  • But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care

    But Where is My Doctor? The Increasing and Relentless Fragmentation of Oncology Care
    Jul 11 2023
    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...
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    24 m
  • Afternoons in the Tower of Babel: Miscommunication in the ICU

    Afternoons in the Tower of Babel: Miscommunication in the ICU
    Jun 29 2023
    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 ...
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    22 m
  • Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care

    Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care
    Jun 15 2023
    Listen to ASCO’s Journal of Clinical Oncology essay, “Market, Gift, Everyday Ethics, and Emmanuel Levinas in Patient Care” by Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. TRANSCRIPT Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we are joined by Dr. Alan Astrow, Chief of the Hematology and Medical Oncology division at the New York Presbyterian Brooklyn Methodist Hospital. In this episode, we will be discussing his Art of Oncology article, "Market, Gift, Everyday Ethics, and the Emmanuel Levinas in Patient Care."  At the time of this recording, our guest has no disclosures.  Alan, welcome to our podcast, and thank you for joining us.  Dr. Alan Astrow: Thank you for inviting me. Dr. Lidia Schapira: Your article has a very long title, and we've got Markets and Gifts and Ethics and a philosopher. So let's start by helping our listeners and maybe our readers to really understand the intention of this essay. What is the message of the essay? Dr. Alan Astrow: The message of the essay is that we need to be reflecting and be mindful of the values that underlie medical care as we practice every day.  Dr. Lidia Schapira: And if I were to quiz you a little bit on that and push a little bit, what are those values? And how does perhaps market conflict with ethics and mission? Dr. Alan Astrow: Trust, caring, honesty, thoroughness, dedication to the patient, focus on the patient and the patient's needs. The problem with market or the danger of market is that it can sometimes distract us from focusing on the patient and that patient's needs. Dr. Lidia Schapira: So how would you respond to somebody who says, but we need organization, we need markets and finances in order to have a system that provides health care? Where do you see the front of conflict, perhaps between those who are more mission-driven, as you've just beautifully articulated and have the trust in the patient's care front and center, and those who are more concerned with the productiveness and efficiency in collections? Dr. Alan Astrow: I have tremendous respect for my administrative colleagues who are focused on keeping hospitals solvent. I worked at a hospital earlier in my career that was not focused as it needed to be on making sure the hospital had a sound strategic plan. And that hospital is now condominiums. So, absolutely, we need to be aware of financial realities and hospitals need to pay their bills. But underlying that, we can't think that the first mission of a hospital is to earn money. The first mission of a hospital is to provide service to those in need. And then our colleagues in administration have to help us find ways to do that in a manner that's financially responsible. But we think first of the patient and that patient's needs.  And patients understand that. Patients don't want the hospitals to go bankrupt, and patients want their doctors and nurses to be paid. Patients do worry sometimes, with good reason I think, that the system may be overly focused - that's the issue, it's an issue of balance - overly focused on markets, overly focused on finance. It seems as if we're living in a world in which money is driving everything. Money is speaking with too loud a voice. That's the issue. Money is important. But the needs of the patient and what our mission is to patients have to be the driving force of the hospital. That has to be the predominant voice, the loudest voice. Markets should be serving the patient and the patient's needs, not the other way around. Dr. Lidia Schapira: I think I understand that clearly. But now let's talk about the gift that's in the title, and that, in my mind, was a very imaginative way of presenting what we bring that is not just a service. Talk a little bit about how you understand the gift of presence or the gift of caring.  Dr. Alan Astrow: The gift is when you're really lost in the task itself. When you're really focused on that patient in front of you and trying to understand the patient and trying to address the concerns that the patient has. And during those moments when you're focused on that patient, you're not thinking about money. No, you should not be. But the first predominant impulse needs to be what the underlying mission of that organization is. And in medicine, it's caring for the patient.  And so, for example, when we hear administrators saying we're going to reach out to this and that market, well, that to me shows a mistaken focus. We understand that the hospitals need to raise money from banks and other places in order to make needed capital investments. But we need to think first and foremost about the ...
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    31 m
  • Cemetery Rounds: Encountering Former Patients' Graves

    Cemetery Rounds: Encountering Former Patients' Graves
    May 23 2023
    TRANSCRIPT   Listen to ASCO’s Journal of Clinical Oncology essay, “Cemetery Rounds” by David Steensma, a hematologist-oncologist in Boston. The essay is followed by an interview with Steensma and host Dr. Lidia Schapira. Steensma describes the complex emotions that result from encountering graves of former patients on walks through a cemetery in his New England hometown. Narrator: Cemetery Rounds, by David Steensma, MD, FACP  In the summer of 1784, the body of a 4-month-old infant named Sally was the first to be laid in the earth of the hill next to my home. The gravedigger’s backhoe still cuts into the ground about once a week in what has become the largest cemetery in this Massachusetts town. During the recent pandemic, the graveyard was an open place with no need to wear a mask, so I often walked its quiet paths in the evening to stretch my legs after long hours hunched over a computer. These unhurried ambles were a chance to reflect on the day’s events and make plans for future days—and sometimes to ruminate on life and how it ends. Little Sally’s simple slate marker, with a willow and urn carved above the names of her parents and a short, grim epitaph—“A pleasant plant, a blooming flower, Cut down & wither’d in an hour”—has been joined by thousands of other tombstones over the past two centuries. After a dozen years living in this Boston suburb, I now recognize some of the names on these memorials: Stones that mark the final resting place of people who were once friends or fellow members of the same Congregational church that Sally’s family belonged to long ago, and stones with surnames shared by nearby schools and streets.  There are too many gravestones that recall young people who were once classmates of our children in the town’s schools. Walking past those memorials means remembering moments of shock and sadness: news about car wrecks and ski accidents, suicides, sudden collapses on hockey or football fields, and the other disasters that take the lives of the young. Stones for the 21st century children are all in the newest part of the cemetery, with its memorials for those who died within living memory. In that part of the cemetery, visitors still often leave toys, Boston Bruins or New England Patriots pennants, lacrosse sticks, and horse reins.  Sally’s stone, in contrast, is the oldest part of the cemetery. It is surrounded only by close cropped grass and stout trees. Once I saw a freshly cut flower laying on Sally’s grave, and I wondered who left it. It is rare to see those ancient graves get special attention—a bracing reminder that no matter how bright our star might shine in our own era, we will all eventually be forgotten. The largest and most prominent gravestone in the cemetery recalls the grandson of a local eccentric. This boy drowned in New Hampshire’s Lake Sunapee at age 17 while trying to save another teenager who had fallen from a boat. It was the second time a close family member of the man had drowned: In 1893, as a child, he watched his older sister slip beneath the swift water of the Annisquam River. He reacted to this pair of tragedies by declaring a lifelong war on gravity.  Grief is not always rational, although it may be productive. The eccentric man became wealthy—by predicting the 1929 stock market crash and by starting a successful business analysis firm—and he created a well-funded private foundation to understand and combat gravity. This Gravity Research Foundation sponsored important conferences attended by Albert Einstein and other luminaries and awarded prizes to Stephen Hawking, Freeman Dyson, and a half-dozen Nobel laureates in physics. Gravity, however, remains unconquered and incompletely understood. All of us will eventually be pulled into the earth by its unrelenting grip. A growing number of gravestones bear the names of people who were once my patients at a Boston cancer institute. Some days it is hard to see those stones on my evening walks, noticing name after name that once graced a clinic schedule or hospital rounding list, and to be so starkly reminded of how our best efforts ultimately failed them.  Most of the time, though, what I recall are the happier moments with these patients, which keeps these walks from being morbid. Cancer centers are not known for being joyous places, yet surprisingly, often there is laughter in clinic rooms or on morning hospital rounds. We oncologists celebrate milestones with our patients: remissions achieved, college degrees completed, new grandchildren, and long awaited weddings attended. We know that graves like these await all of us, but for a while, we can put that aside and not just live but thrive. In one corner of the cemetery, a small marble bench faces a stone that marks the final resting place of one memorable former patient: A young woman with a wicked sense of humor who, as a grieving relative said at her funeral, was wise beyond her years, and taken ...
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    24 m
  • A Labor of Love: End-of-Life Support for Young Patients

    A Labor of Love: End-of-Life Support for Young Patients
    May 18 2023
    Listen to ASCO’s Journal of Clinical Oncology essay, “A Labor of Love” by Dr. Rebecca Kowaloff, a Palliative Care Attending at the University of Massachusetts. The essay is followed by an interview with Kowaloff and host Dr. Lidia Schapira. Kowaloff shares how she connects and supports young patients and families at the end of life. TRANSCRIPT Narrator: A Labor of Love, by Rebecca Kowaloff  I had always thought that I gave too much space for death at the bedside of my patients. More than most of my medical colleagues, I seemed to accept its inevitability and had learned to talk about it, to watch it, and to sit with it. I did not cry, even for the patients robbed in their middle age by cancers sucking their life from within, aging them in hyperspeed before my eyes. Why did the weight not feel heavier to me when so many around me seemed unable to carry it? Despite the frailty of his body when we met, caring for Michael showed me my strength. He was a 25-year-old investment banker on Wall Street when he was diagnosed with a rare sarcoma. I wondered what he was doing the moment that first cell divided. Was he working late, handing a $100 tip to a taxi driver as his father said he sometimes did, or practicing with his college soccer team? Was this disease written into his genetic code when he was traveling the world with his family, smiling with missing teeth on a dock in Egypt in the pictures his father showed me? Did his body know it would have only 29 precious years, making him so generous to strangers, so thoughtful of others, and so eager to experience life and travel the world? I am sure he was full of hopes and dreams that shattered at the moment of his diagnosis. Amid the onslaught of emotions at diagnosis and as various chemotherapy regimens failed him, he started a foundation for sarcoma research to leave a legacy of helping children with similar rare tumors.  Outside the hospital, we would almost have been peers as I was less than 10 years older and could imagine the assumptions he would have had about his life would be similar to my own. Suddenly there was no meeting a life partner, no wedding, and no children. There was no career advancement, no retirement trips, and no new hobbies or interests. There are books that will go unread and current events unexperienced. The world which had been expanding at a spectacular pace suddenly contracts to one person’s orbit: family, close friends, and what dreams can be realized on a shortened timeline in a perhaps newly limited body. He moved from New York City home to his mother’s house, returning, in some ways, to childhood.  His soft-spoken mother listened to my prognostications with grief but not surprise, and my heart ached and eyes welled as I thought how she was watching her baby die. Each night on my drive home, I wept for her. When she saw him walk for the first time, she must have wondered what sports he might play. When he spoke for the first time, she might have wondered what conversations they would have, what speeches he might give, what school plays he might perform, and what songs he might sing. Like me she might have imagined cheering him on in sports, dancing with him at his wedding, and holding his children. She had watched him forge a path onto Wall Street and earn the friendship and respect of teammates on ever more advanced soccer teams. The sadness of her first child leaving home for college had surely receded as he self-actualized into a thoughtful, well-liked, and successful young man. And then came the diagnosis, and she watched all that her son had built slip away, watched him cling to as much normalcy as he could as the sarcoma ate his legs, sank his eyes into his skull, and sucked the color from his still-thick hair.  His father appeared one evening almost a month into his hospital stay with the desperate questions of a parent who has been in such deep denial he had not even told his brothers back home about Michael’s illness. In a power suit, he blubbered that he could not live without his son, his "light," and begged me for fantastical treatments to fix him. In a tiny windowless meditation room, I rode the waves of despair with him. I explained over and over why our best efforts were no match for Michael’s cancer.  Michael and I were practically peers and yet he entrusted me to lead him into this deep dark forest of the unknown, his final journey. Most times when entering his room I thought he had begun to "transition," his eyes half closed, his skin so pale and translucent, and his body so frail. One morning, I sat next to his bed and gently told him he was not improving, his lungs were failing, and I could not, would not, recommend intubation, which seemed imminent. He protested, asserting from behind an oxygen mask that he felt he was improving. He talked about physical therapy and restarting the treatment that had led him to this hospitalization, that had finally failed as he had always known it ...
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    29 m
  • At a Loss: Patient Deaths and Clinical Research Coordinators

    At a Loss: Patient Deaths and Clinical Research Coordinators
    Apr 25 2023
    Listen to ASCO’s Journal of Clinical Oncology essay, “At a Loss: Patient Deaths and Clinical Research Coordinators” by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials. TRANSCRIPT Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP (10.1200/JCO.23.00040) As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient’s chart to coordinate study appointments and collect clinical information. When opening a patient’s electronic health record, a snapshot immediately appears on the screen with the patient’s medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient’s name], who is deceased. Date of death: [date].” We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study. In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors’ laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients. CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works. When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us. As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient’s death has a profound impact on us. We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden. Knowing that patients with serious illnesses die did not protect or prepare ...
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    28 m
  • Capturing Memories for Children with Cancer in a Low-Resource Setting

    Capturing Memories for Children with Cancer in a Low-Resource Setting
    Apr 11 2023
    Listen to ASCO’s JCO Global Oncology's essay, “Capturing Memories for Children with Cancer in a Low-Resource Setting” by Dr. Allison Silverstein, an Assistant Professor at the University of Colorado School of Medicine. This Art of Global Oncology essay is followed by an interview with Silverstein and host Dr. Lidia Schapira. Silverstein shares her launch of a framed picture legacy project in Malawi for those with childhood cancer in a low-resource setting. TRANSCRIPT Narrator: Capturing Memories for Children With Cancer in a Low-Resource Setting (10.1200/GO.23.00001) I was the paparazza, capturing salient moments from our program’s “Palliative Care Day” where children with cancer and their guardians played games, completed artwork, sang and danced, and enjoyed meals together. It was a precious day for these children with life limiting disease to shed the weight of their diagnoses and instead share laughter and joy with one another. As a pediatric resident on a global health year in Malawi, I was invited to document our team’s activities with the intent to share with potential donors. However, with a click of the camera’s button, I realized the opportunity for an unintended greater impact. I scrolled through the day’s pictures and could not help but think the recipients of the pictures should not be strangers, but instead the families or even children themselves. Although families had already provided consent for each picture, they never expected to see them. Pictures capture moments in ways words cannot describe. Coming from a Western society where we celebrate and honor life in pictures, I wondered what happens when you do not have a camera or phone capable of capturing these events. What visual memories do you have when your child dies? Does it feel differently when remembering a lost child without pictures to look at? Do vivid memories fade and, in time, make it difficult to imagine your child’s face? As I reflected on this, I acknowledged the overwhelming frequency of childhood cancer death in our setting—in contrast to a .80% survival rate for childhood cancer in the United States,1,2 the childhood cancer mortality rate is estimated to be as high as 90% in sub-Saharan Africa.3 Most of these children present with advanced disease, where disease directed treatment is less likely to be effective,4 and limited availability of medical and supportive care further contribute to poor outcomes.  Although progressive medical infrastructure has sprouted across regions of sub-Saharan Africa to help address these disparities, widespread gaps exist in interdisciplinary services. Families of children with cancer face substantial psychosocial, emotional, and spiritual distress. Many families are fortunate to have robust community support, but we must consider how we, as a medical system, can further support families. Our role includes providing comfort to families, especially when curative medical therapy is not an option and a child’s final days near. We must integrate humanities and holistic support for our families as we scale up global health programs, just as is already done in high income settings.  So, when I set my camera aside, I earnestly turned to my local colleagues for their counsel. They grinned as they confirmed the potential value of my blossoming idea. I went to a nearby store where I printed the pictures and purchased basic supplies—glue, string, tape. We collected old boxes from prior hospital pharmacy deliveries and bought local vibrantly colored fabric—chitenje—from the market. From these materials, our first frame was designed. These local materials were obtained on a minimal budget. I shared the first picture and its frame with our social worker who presented the aunt of P with the picture (Fig 1); P had leukemia and had died recently from complications associated with central nervous system disease. In his picture, there he was, coloring during the event we held a few weeks prior. He wore sunglasses and shared that smirk we had all quickly fallen in love with. As she graciously accepted the frame, the corners of P’s aunt’s mouth turned upwards into a rarely seen smile; she bowed her head silently as we spent a moment remembering P and sharing in his memory. The next week, I had the privilege of joining our team on a bereavement visit to the home of B’s father. B had recently died at home and our team visited to provide grief support and share prayers together. We sat in a circle on well-worn couches and chairs as B’s father offered he did not have any physical belongings or keepsakes of his son beyond leftover medical supplies from home wound care management; any clothes or toys were passed along to other children and other families. As he shared with us, he removed a cloth covering their makeshift table to reveal a cardboard box, inside of which he retrieved these remaining medical supplies so they could be given to another family. We pulled out a ...
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    23 m
  • First Cousins Once Removed: Respecting A Loved One's Wishes at the End of Life

    First Cousins Once Removed: Respecting A Loved One's Wishes at the End of Life
    Mar 28 2023
    Listen to ASCO’s Journal of Clinical Oncology essay, “First Cousins Once Removed” by Dr. Matthew Farrell, a radiation oncology resident at UCLA. The essay is followed by an interview with Farrell and host Dr. Lidia Schapira. Farrell paints scenes of how different family dynamics can come into play when advocating for patients. TRANSCRIPT Narrator: First Cousin Once Removed, by Matthew J. Farrell, MD, MFA (10.1200/JCO.22.02611)  When I was a kid, long before I wanted to be a doctor or had even heard of oncology, I dreamed of becoming an actor. I grew up in Sacramento—not exactly the beating heart of the film industry—but my mother’s mother lived in Santa Monica and we would stay with her for a month every summer. My father would unashamedly sneak me into movie premieres in famous theaters, and he bought us season passes to Universal Studios Hollywood. Despite having a serious job—as a psychologist in the emergency department—he was a kid at heart. Los Angeles was our promised land, and our shepherd was my father’s cousin John, my first cousin once removed, who lived in West Hollywood and was a living, breathing actor.  John wasn’t famous, not yet. He was in his late 20s, just starting out, doing mostly background work and some commercials while working as a waiter at the original Cheesecake Factory in Beverly Hills. All the staff loved him there, so much so that they would give us free pieces of cheesecake just for being related to him. John was generous, outgoing, expressive, and talented. Success seemed just around the corner.  One challenge for him was his voice. He had a thick Bronx accent, which would have been perfect if he had been auditioning for Raging Bull but which otherwise narrowed his prospects. He hired a voice coach to help him erase his accent. But that didn’t mean he was trying to erase his New York roots. He was proud of his upbringing and family, coming from a long line of police officers, burly men with strong jaws and thick arms and outdoor voices who seemed to be the very genesis of their own stereotype. And as his Bronx accent faded, he was teaching it to me. He said he would take me to a baseball game at Yankee Stadium one day, and he imitated the beer hawkers who walked up and down the aisles, calling out to the crowd, “Get your beer here,” but pronounced, “Getcha bee-ah hee-ah!” John was the first person I distinctly remember being in perfect shape. He was a sight to behold—muscular and solid, yet graceful and light on his feet. In addition to being an actor, he was training as a dancer. Coming from generational athletic ineptitude myself, I was enthralled. He taught me how to moonwalk and do bicep curls. I would walk up to my mother and flex my tiny muscles, imagining a day when I would be as strong as John. One summer, John was much thinner—his face hollowed out, his previously bulky arms as lean as my own. What I only vaguely understood at the time was that he was gay, and he now had AIDS. This was the mid-1990s, and highly active antiretroviral therapy was on the horizon but just out of reach.1,2 His treatments failing him, he became desperate for a cure. He did twice daily coffee enemas, choked down repulsive herbal concoctions, and visited New Age visionary healers. For a long time, he remained optimistic. He was in constant contact with his agent, seeking out auditions even as his strength waned. He wasn’t only a waiter at The Cheesecake Factory and he wasn’t dying of AIDS; he was an actor who was going to be healthy again soon. Occasionally he would call my dad, buoyant with hope, “The virus is gone. I’m cured.”  Of course, he wasn’t. My father never tried to talk John out of pursuing alternative therapies, though he considered doing so many times. The frantic search for a reprieve from death can take us many places, and it is not to be pitied. But how do you also protect your loved ones from harmful remedies and predatory scam artists? How do you provide the best treatment when there is no good treatment? In all my years, all 10 of them, I had thought that doctors knew everything, and if you went to them, you would get better. But John wasn’t getting better. Together with his doctors, we embraced helplessness.  His CD4 count fell to zero. He developed skin lesions from Kaposi sarcoma. He was repeatedly hospitalized with Pneumocystis pneumonia. His organs began failing. Ultimately, he decided to leave the hospital on hospice. It was only then that he told his parents he was gay and had AIDS. At first, his parents couldn’t believe he was gay. They told my father it was a phase, possibly brought on by his living in Los Angeles, a side effect of being an actor and dancer. Later, at his memorial service in New York, they would tell everyone he had died of a rare cancer. My father remembers someone asking John’s mother what kind of cancer it was, and she said, “I don’t know. It’s very rare.”  During my ...
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