I have always loved stories. Stories bring comfort, form connection, and share truths. Stories have power, and my appreciation of the depth and complexity of this power has grown over the course of my life, medical training, and medical practice.
As a child, I heard a lot of family stories—tales that were told over and over until I rolled my eyes while secretly relishing their telling and retelling. They gave me a sense of place in the world and breathed life into the memory of those who had come before me. In medical school, I exchanged stories from the wards with other students as means to process my experiences and the transition from lay person to medical professional. It was in residency that I learned of the concept of Narrative Medicine as a means to formalize this process. One of my co-residents hosted a monthly Narrative Medicine writing group. We sat in her living room and wrote in comfortable silence whatever story came to our minds for forty-five minutes. We then took turns reading out loud, and the spoken words and space we held for one another wove us together in community and belonging.
In the subsequent years as a practicing physician, I have missed the structure of this approach but also become aware of the daily presence of story in medicine and its possibility for patients, families, and the care team. We tell one another the stories of patients’ medical conditions, and it forms our assessments and our plans. We hear patients tell their stories, and if we take the time to listen well, that simple act can be profound. It can restore to the patient a sense of identity and personhood. It can restore to the provider a sense of meaning and purpose. And it can reach across the roles of patient and provider to form a connection at a more fundamental, human level. Which brings me to the story I would like to share today.
I once cared for a patient I will call Sue with end stage vascular disease and worsening wounds on her right leg due to poor blood flow. Her husband “Mark” recounted that Sue had always been the more vibrant and outgoing of the two during their 54-year marriage, until the vascular disease started five years ago and her body progressively declined. He felt that she had crossed the line from “living” to “just existing” and that she would not want this quality of life extended. He thought that most likely it was time for comfort care for Sue but wanted the night to think about it.
The next morning, I walked into Sue’s room and found that she was unexpectedly having severe difficulty breathing. The nurse was trying a nebulized medication, but her breathing was getting worse instead of better. I wondered if she could be having a severe allergic reaction called anaphylaxis. We called for more help and started emergency protocols for anaphylaxis. Unfortunately, none of the medications helped and Sue’s struggle to breathe continued to worsen. I pulled Mark and the intensive care provider outside of the room to talk. Mark had been clear Sue would not want to be put on a breathing machine. Short of this, the intensivist explained that he could bring Sue to the intensive care unit for a direct infusion of more Epinephrine (adrenaline) into her veins, but he wasn’t sure if it would work and might only prolong her suffering. Mark opted instead to make her comfortable. He held her hand and said goodbye. With the first doses of pain and anxiety medications, Sue’s face and body began to relax. With more medication, she went to sleep and became comfortable.
As I left her room and tried to go on with my day, I felt on edge, disquieted. Adrenaline still coursed through my body. My thoughts kept going back to that room, as I had watched Sue struggle to breathe. Did I miss something that could have treated her better or sooner? Or did we keep trying too long and let her suffer unnecessarily?
Later that day, I passed by Mark sitting on the hospital sky bridge looking out at the mountains. I took a seat beside him, and we just talked. We talked about Sue, and about Mark coming to grips with his life continuing after Sue is gone. He told me stories of his life with Sue, of their daughter, and how he taught her to ski as a young child. He still skis and hopes to continue for another decade. His mother skied well into her eighties before she died, after all. I told him about my father pulling me out of school when I was a child to go cross-country skiing when the snow was right, and how maybe this was the year we’d teach our young daughter to ski. Mark asked if he was taking too much of my time. I told him I didn’t have anything better to do. Telling these stories was important to me too.
The stories connected us as human beings and created a context with which to hold the intensity of that morning. That shared experience was now nestled inside the larger web of our lives, of family, of generations past and future, of snow and mountains. By sharing these stories and weaving this web, the trauma lessened, and we could each find some peace.
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