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What Can One Say? Last Words to an Individual in Hospice

2018; Wiley; Volume: 66; Issue: 11 Linguagem: Inglês

10.1111/jgs.15454

1532-5415

Aldis H. Petriceks,

Empathy and Medical Education

The silence was palpable, much like the question. We were a group of 20-odd medical students, nursing students, and future researchers crammed into a dimly lit seminar room on the fourth floor of a medical school building. The setting was Stanford University, where a new lunchtime seminar course, titled Being Mortal, met once a week to discuss end-of-life care. Geriatrics was this week's focus, and a seasoned geriatrician had been guiding us through policies and practices important to his field. We had a fascinating discussion on Medicare, nursing homes, and social factors that influence outcomes in older adults, but most intriguing of all was this physician's final question, posed rhetorically to an unexpectant group. “Many of you will be geriatricians,” he said, to the self-selecting cohort that day. “What would you say to a patient of yours, at the end of life, when you know it is the last time you will see them before they die?” The pins dropped in our collective imagination. What can one say? What should be conveyed, as the physician–patient relationship loses its present tense? These questions leapt upon me that day, although not for the first time. Months earlier, I had faced an identical tension, more real than rhetorical. As an aspiring geriatrician at Stanford, I had long wrestled with the personal and philosophical implications of geriatrics as a whole and end-of-life care in particular; by the time that seminar rolled around, I had spent hundreds of hours with dying individuals during my time as a hospice volunteer before medical school. Yet I had never considered my last words to a patient. I had served many individuals who were far exceeding expectations, with no foreseeable end in sight; I also cared for numerous people with days or weeks to live, for whom that “last time” was not precisely knowable. But I had never encountered a patient with whom I had developed a long-term working relationship and also known the course of their last days. That changed when I met Barbara (name and identifying features altered). Barbara was a kind, mischievous woman in her mid-70s. She was a wife, mother, and grandmother who loved cartoons. She was also dying of pancreatic cancer and spent 3 months in the hospice facility where I volunteered. As Barbara and I came to know one another, we discussed the most intimate parts of her illness: her shaken identity, the quick succession of medical treatments, and the pain, always the pain. An incredible palliative care team managed this last symptom, allowing Barbara meaningful time with her family and friends, but the pain was still tricky. It never truly disappeared, and as her body swelled with edema, each day was a tribulation. “My son,” Barbara would chuckle in half-jest, thinking it odd that such a young man spent his weekends with the dying, “I'm so happy to see you today.” I would smile and place my hand on her shoulder. Always, I tried to validate her suffering, affirming the steadfast love of her family, physicians, and nurses. But still, the pain: “It hurts,” she often moaned beneath her breath, “It really does.” No one wanted this for Barbara—not her family, not her medical team, least of all herself. So, after long discussions with caregivers, she and her family chose terminal palliative sedation. The intervention would take place that Tuesday. It was Sunday morning when I learned this. My shift ended on Sunday night. When I heard of Barbara's decision during the hospice staff turnover meeting, I was saddened but not surprised. Nonetheless, after months in that caregiver–patient relationship, I wanted to convey my understanding and support. But other than caregivers and close family, nobody knew about the choice, and when I entered her room, numerous grandchildren packed the walls as part of a large family visit. Most were unaware of the situation, and this was no place to start a conversation. A puzzling tension thus arose: Barbara did not know that I knew of her decision. Both of us had important truths to communicate yet no way to voice them. “What do I say?” I frantically pondered as the hours passed. Eventually, my shift ended. A young nephew sat on Barbara's lap as the other children—and Barbara herself—enjoyed cartoons on the television. Then a new truth manifested, and I would try to give it voice. In Barbara I saw a bit of all us humans, suffering through victories and losses and illness and health. In her I saw a stalwart will, finding meaning and joy amidst mortality. In her I found a wisdom to heal my future patients, even when there is no cure. In that moment, all these truths amalgamated into a semicoherent babble of honest, authentic love. I placed my hand on her shoulder, squeezing a little tighter this time. We both knew what the moment meant. “I have to head out now, Barbara,” I said, as our eyes talked over the words, “It's great spending time with you. You mean a lot to me, and always teach me something new, but I should let you enjoy your family; they're lucky to have you. I'll miss you. Have a good night, Barbara.” Weeks later, as I sat in that seminar room, the question returned: What do I say? There was no right answer, the geriatrician noted. But still I thought, pondering the inelegance of my past answer—the diffidence, the locked eyes, the inaudible truth beyond words. I thought on what I said and what it all meant. If I had to do it again, Barbara, I wouldn't change a thing. The patient described has had all identifying details removed or altered, and her name has been changed for privacy. Conflict of Interest: None. Author Contributions: The sole author listed performed all work related to the present manuscript. Sponsor's Role: No sponsor was used for this manuscript.