I recently lost my first patient as a primary care doctor. Almost a full year ago he was one of the first few patients I saw as an “attending.” He had avoided doctors for 30 years but couldn’t ignore his daily fevers and night sweats any longer. Shortly after our first visit he was diagnosed with lymphoma and subsequently underwent chemotherapy and achieved complete remission. Late in the summer he messaged me requesting a refill on his albuterol. I wonder now if that was a sign. I messaged him back asking how he was doing and encouraging him to come see me in clinic and get his flu shot. He never responded. About a month later he presented to the ER in septic shock and died within days. I was left with the familiar feeling of helplessness that I had throughout residency when patients passed away. It was a sunny Sunday morning when I logged into Epic and saw the death note. Although it hurt and I wondered for a few moments what I could have done differently, I eventually went out and forced myself to enjoy the day. Something I had trained myself to do in residency when there was simply no time to grieve.
On Monday morning I broke the news to my medical assistant. In our clinic, doctors and their medical assistants work as a close team in caring for a panel. I consider the patients we see to be “ours” – we both know their stories and quirks in addition to their medical needs.
“I don’t know if you saw this already… but Mr. D passed away over the weekend,” I said as I was robotically signing prescription refills and home health orders.
She was quiet. As soon as I looked up and saw the expression on her face I realized that I had been far too casual in my delivery. I had said the words in the way that I had grown accustomed to saying and hearing them in the hospital, where deaths happened relatively often. But this was a primary care office with a generally healthy, young population, and this was the first death we had had together, possibly her first patient death ever. She had a completely natural human reaction to the situation – a mixture of sadness and shock. And I was reminded again how effectively I had conditioned myself to bury these emotions and move on.
It brought me back to the first time I pronounced a death as an intern. It was during lunch and I was eating an Ike’s turkey sandwich in the workroom. A nurse knocked on the door and told me that Mrs. P had stopped breathing. I walked calmly to her room, asked her sobbing family to step out, went through the motions, gave my condolences to her husband and the time of death to the nurse, and returned to the workroom. I sat down in front of my half-eaten sandwich and despite the fact that it felt like a denial of my own humanity, I decided to keep eating. Part of me felt like a monster at the time, but most of me felt like it was an act of self-preservation. I could not afford to do anything in that moment but bury it.
I can think of countless times over the course of residency that I did this – walking away from an unsuccessful code, sitting in the ICU filling out a death packet, on hold while trying to reach the OPTN, returning to the call room after a terminal extubation – situations in which I felt that humanity bubbling up in me and I diligently pushed it back down.
Of course there have been some patients and memories that I found very difficult to bury. And I personally have found great solace in writing about those people and experiences. However this form of expression is not for everyone and also requires considerable time and emotional space, which I admittedly never felt I had in residency. When I reflect on those years, it’s clear to me that what I was wanting and needing was some small way to acknowledge and honor the patients who I lost – whom we all lost. Something between pronouncing death and eating a sandwich. Some time or space or object in which to briefly channel those difficult emotions. I distinctly remember having this feeling once on Med X (Inpatient Oncology), and having the urge to make a paper crane.
There was one patient on Med X that month that every member of the team adored. We had smuggled him a red blanket to indicate ‘VIP’ status, not because he was a big donor or on the hospital board, but because he was just so delightful. One day he made each member of the team a paper crane. Even though it took him mere minutes to make and he handed one to every white coat that entered the room, I found it deeply meaningful. He had channeled his hope and fear and suffering into this elegantly folded piece of paper and given it to each of us. It was an acknowledgement of our humanity as well as his. I placed mine next to my computer in the workroom and found myself looking at it in moments I needed to remember why we were all there. Less then a week later my red paper crane disappeared, presumably discarded by housekeeping during a deep clean. I thought about making another one, but I convinced myself there was no point. In retrospect, I see the point and the potential – the act of making the crane would have been an opportunity to reflect, to channel my emotions into an action and to create something tangible that allowed me to both honor and acknowledge the loss of a patient, but also to let it go in a way that felt human.
I propose that residents on rotations with high mortality, such as inpatient hematology, oncology and ICU be given the opportunity to process patient deaths in this way. This would involve placement of a pack of origami paper, instructions on making a crane and a large jar in resident workrooms, along with a 10-15 minute intro to the project given by a project representative or me during each block. Participation in the project in the form of making a crane would be completely voluntary. Residents would be invited to write a message, memory, date or initials on the paper prior to folding. Jars would be emptied and replaced as needed and the final collection of cranes could be displayed in the form of an art installation in the hospital at the end of the year.
The Paper Cranes Project 