Sugar on Strawberries

I was driving home from the third day of my hospice rotation when I got the call: “Grandpa’s taken a turn and is going into hospice.” My mom had never called me in tears like this before. Shaking, I pulled the car over and learned that my stoic, Korean War veteran, Michigander, American-car-loving “Gramps” had another of his recurrent urinary tract infections, and this one did not seem to be getting better. His team recommended he transition to hospice for comfort care. Sepsis, they said.

As a pediatrician, I had not taken care of adults in years. Now in my hospice and palliative medicine fellowship training, I had just stepped back into the world of adult medicine, seeing patients at our local inpatient hospice facility. It was surreal after years of caring for children and families to be seeing patients who had lived many decades of life. From my first day dipping my toe back into adult medicine at the hospice house, I was overwhelmed by these patients’ histories; not just the medical history, but the life history. They had experienced so many seasons of life—partners, children, jobs, world events—in a way that my pediatric patients had not. I was just beginning to recognize this type of loss that felt so unfamiliar to my practice when I was suddenly faced with the experience on a personal level.

I raced home, booked a flight, rushed to the airport, flew, rented a car, and drove straight to the hospice facility, desperate to see and communicate with my grandfather while he was still alive. With the COVID-19 pandemic, I, being in New York City and my grandfather in Florida, we had not seen each other in person in almost two years, making the need to get to him even more desperate. Dashing into the hospice facility, I was struck by my journey—going from being a provider at one hospice house to being a visitor of a beloved relative at another hospice house in such a brief period of time.

My identity felt wobbly, as I was uncertain of my role or how to help. I was only in my fourth month of hospice and palliative medicine fellowship, still consolidating the basic skills. As the only health care professional in my family, and with this as my specialty, it felt like a place I should be comfortable and an advocate. And yet, I felt helpless and afraid, knowing both too much and too little at the same time. I sat at my grandfather’s bedside for hours and had hospice providers say the same thing to me that I had already said to patients’ family members numerous times: “Would you like to take a break and get something to eat?” I listened to his progressively more irregular and noisy breathing, and despite knowing the evidence, felt compelled to ask the questions I had heard from so many loved ones at bedside: “Are you sure his breathing is comfortable? Can you give him something for this?” As we neared the fourth day of sitting vigil, my family asked me, the barely-a-fellow, how much time I thought he had. My imposter syndrome flared as I replied with what I had been taught: “I wish we could know exactly, but it seems like time may be short.”

Being in this liminal space with my family was disconcerting; as I watched them grapple with the changes they were seeing in our beloved husband/father/grandfather/great-grandfather, I saw glimpses of family members I had met with as a palliative care fellow over the past several days, wondering about similar things and struggling with the uncertainty. As we asked his hospice team about symptoms, medications, and funeral arrangements, I saw myself sitting at my patients’ bedsides back home and ruminated on the unsatisfying answers I had given to similar questions. I felt how profoundly important it was to share stories about my grandfather with the hospice team, that his gregarious personality and 6′5″ frame had exuded so much more throughout his life than they could see from his wizened body in the hospital bed now. I knew well from my pediatric practice how essential patient and family narratives are, how a patient’s family system and context shape their medical care; this is what drew me to palliative care as a specialty. Still, I was struck by the significance of holding patient narratives in caring for adult patients at the end of life. There are so many stories to hear, so many lives touched, a multitude of experiences that shaped this adult and family you are caring for.

On my grandfather’s final night with us, my family went to grab food and rest, sustaining our ongoing vigil. I was not ready to leave him though, worrying about him being alone. Together, we watched his beloved Detroit Tigers, followed by the Green Bay Packers—how these sports games of his homeland teams happened to be back-to-back, I can only assume was a divine sign. I dozed off, his hand in mine, with memories playing behind my eyelids: walking a stone wall to the ocean in Rhode Island each summer, his joyful whistle as he puttered around, him always sprinkling sugar on the strawberries he cut up for me. I breathed as he breathed, feeling his breaths become more spaced out, then faster again. His nurse came in to do his cares and gently woke me to suggest I go home and get some rest, assuring me she’d be checking on my grandfather. An hour after I left, we got the call: Gramps had died. The nurse said what I had already heard many times this fellowship year: “sometimes people wait until you leave to protect you.” I wished he was not alone at the end, and yet, we know he was not. These final lessons from my beloved grandfather were an unexpected gift that I carry with me in this work, as I listen and learn from patients and their loved ones.