Abstract
A 96-year-old man asked me, “well now, what questions do you have for me?” The home hospice attending and I were sitting on mismatched chairs next to his wife and daughter. This man had welcomed us into his “home” at a long-term care facility for recertification of his hospice eligibility which was filled with family pictures, art, and memorabilia collected over nearly a century. I had recently started my hospice and palliative care medicine fellowship as the sole pediatrics-track fellow at a large, midwestern academic center and it was my responsibility to determine whether this man would live another six months, assuming the underlying disease ran its predicted course. But I was dutifully unprepared to make this decision—I am a pediatrician. To be clear, the last time I cared for an adult patient was over 7 years ago in medical school. I found myself feeling anticipatory fear simply thinking about holding a conversation about dying… with the person who is actually dying. I awkwardly giggled and said, “no, but thank you for allowing me into your home.” Now have the best last few days/weeks/months of your life?
The more adult patients I saw, the more I felt myself reflecting on lives beautifully lived but also lives tragically misused. I found myself forecasting my own mortality—what are my wishes? Who will be at my bedside? What will it feel like? I kept imagining the scene at the end of The Notebook when Allie and Noah are lying in bed together, hand in hand, requited lovers through all of life’s challenges. Although fictional, they knew what they wanted;they lived enough life to choose their own deaths. I think about what my story will look like despite a third of it already having been written.
As a trainee in pediatric palliative care medicine, the question I am most often asked is, “how do you deal with dying children?” I knew this fellowship would be hard but I expected my background in pediatric critical care to humble the difficult days. Our palliative care team’s consult list rarely dropped below 75 patients and our responsibilities extended in many different directions including building rapport, leading difficult conversations, advising on symptom management, neutralizing complex decision-making, organizing the withdrawal of life-sustaining technology with a focus on comfort-focused care, and facilitating hospice services.
My answer to this question typically dismissed the implied undertones suggesting that my career is challenging, exhausting, and depressing. Sure, these emotions come in brief waves but overall, it’s empowering. I chose medicine to connect to other humans; I chose pediatrics to impact the lives of children; and I chose palliative care to optimize a child’s quality of life. Unbeknownst to most, we are fortunate to longitudinally follow patients for weeks, months, and even years. In comparison to our adult colleagues who may meet a patient for hours or days, our patients with complex chronic conditions and life-limiting diagnoses have prolonged survival with the assistance of medical technology. In addition to holding hope, many families have time to grieve from the time of diagnosis to the time of death. Some may say this is a gift while others, a burden. Although never prepared for death, families repeatedly seek comfort in having control over when, where, and how their child dies. Regularly, there is a plan: emotional goodbyes, cuddles in too-big-of a bed, and skillful supportive measures to mitigate suffering. The responsibility of managing a child’s end-of-life on a daily basis does not evade me but, quite often, offers peace aligning with a family to orchestrate a comfortable death.
Given our role in patient care, it’s not uncommon for folks to believe that palliative care physicians are experts in death but in fact, we are experts in living. I often tell families that have children with life-limiting diagnoses that I cannot imagine going through their experience. Simply put, the choices offered to families and the decisions they make can be impossible: a painful procedure with the possibility of life-prolongation but also a significant risk of death in the operating room; or, a planned weaning of medical technology leading to inevitable death and with a focus on aggressive symptom management to prioritize the relief of pain and suffering. Unlike adults who can rationalize, reason, and make the best decision for themselves in the setting of their own hopes, children are often unable to verbalize their pain, their suffering, and their wishes. It is my responsibility to advocate what may be in the best interest of the child.
My 96-year-old hospice patient had a prognosis of less than six months to live. He is not blind to his age, his diagnoses, and his temporal end. But I realized after our encounter that I made a mistake. When he asked me if I had any questions I should have asked him, “what are your hopes and fears?,” “what is a meaningful death to you?,” and “what do you wish to be your legacy?” But truthfully, I was too scared. I was too scared to ask these questions to myself and, in reciprocation, confront my own mortality.
Adult patients taught me how to live and pediatric patients, most of the time through the loving decisions of their parents, taught me how to die. I learned that death brings focus to the people, objects, and experiences we value the most. Each patient I have cared for has made me re-evaluate and organize my priorities for how to live my best, most fulfilling life.