I Hope So Too: Creating Space to Hope with Patients and Families скачать в хорошем качестве

I Hope So Too: Creating Space to Hope with Patients and Families

Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "I Hope So Too” by Dr. Richard Leiter from Dana-Farber Cancer Institute. The article is followed by an interview with Leiter and host Dr. Mikkael Sekeres. Leiter shares that even in the most difficult moments, clinicians can find space to hope with patients and their families. TRANSCRIPT Narrator: I Hope So Too, by Richard E. Leiter, MD, MA “You’re always the negative one,” Carlos’ mother said through our hospital’s Spanish interpreter. “You want him to die.” Carlos was 21 years old. A few years earlier he had been diagnosed with AML and had undergone an allogeneic bone marrow transplant. He was cured. But now, he lay in our hospital’s bone marrow transplant (BMT) unit, his body attacked by the very treatment that had given him a new life. He had disseminated graft-versus-host disease (GVHD) in his liver, his lungs, his gut, and, most markedly, his skin. The BMT team had consulted us to help with Carlos’ pain. GVHD skin lesions covered his body. They were raw and weeping. Although the consult was ostensibly for pain, the subtext could not have been clearer. Carlos was dying, and the primary team needed help navigating the situation. As his liver and kidney function declined, the need to address goals of care with Carlos’ mother felt like it was growing more urgent by the hour. Difficult cases, like a young person dying, transform an inpatient unit. Rather than the usual hum of nurses, patient care associates, pharmacy technicians, and unit managers going about their daily work, the floor becomes enveloped in tension. Daily rhythms jump a half step ahead of the beat; conversations among close colleagues fall out of tune. “Thank goodness you’re here,” nurse after nurse told my attending and me, the weight of Carlos’ case hanging from their shoulders and tugging at the already puffy skin below their eyes. I was a newly minted palliative care fellow, just over a month into my training. I was developing quickly, but as can happen with too many of us, my confidence sat a few steps beyond my skills. I thought I had a firm grasp of palliative care communication skills and was eager to use them. I asked for feedback from my attendings and genuinely worked to incorporate it into my practice. At the same time, I silently bristled when they took charge of a conversation in a patient’s room. Over the ensuing week, my attending and I leaned in. We spent hours at Carlos’ bedside. If I squinted, I could have convinced myself that Carlos’ pain was better. Every day, however, felt worse. We were not making any progress with Carlos’ mother, who mostly sat silently in a corner of his room. Aside from occasionally moaning, Carlos did not speak. We learned little, if anything, about him as a person, what he enjoyed, what he feared. We treated him, and we barely knew him. Each morning, I would dutifully update my attending about the overnight events. “Creatinine is up. Bili is up.” She would shake her head in sadness. “Doesn’t she get that he’s dying?” one of the nurses asked us. “I feel like I’m torturing him. He’s jaundiced and going into renal failure. I’m worried we’re going to need to send him to the ICU. But even that won’t help him. Doesn’t she understand?” We convened a family meeting. It was a gorgeous August afternoon, but the old BMT unit had no windows. We sat in a cramped, dark gray family meeting room. Huddled beside Carlos’ mother was everyone on the care team including the BMT attending, nurse, social worker, chaplain, and Spanish interpreter. We explained that his kidneys and liver were failing and that we worried time was short. Carlos’ mother had heard it all before, from his clinicians on rounds every day, from the nursing staff tenderly caring for him at his bedside, and from us. “He’s going to get better,” she told us. “I don’t understand why this is happening to him. He’s going to recover. He was cured of his leukemia. I have hope that his kidneys and liver are going to get better.” “I hope they get better,” I told her. I should have stopped there. Instead, in my eagerness to show my attending, and myself, I could navigate the conversation on my own, I mistakenly kept going. “But none of us think they will.” It was after this comment that she looked me right in the eyes and told me I wanted Carlos to die. I knew, even then, that she was right. In that moment, I did want Carlos to die. I could not sit with all the suffering—his, his mother’s, and his care team’s. I needed her to adopt our narrative—that we had done all we could to help Carlos live, and now, we would do all we could to help him die comfortably. I needed his mother to tell me she understood, to accept what was going on. I failed to recognize what now seems so clear. Of course, his mother understood...