During the 2013 TEDMED conference, Compassion & Choices President Barbara Coombs Lee shared her insights on 20 Great Challenges of Health and Medicine with five other multidisciplinary thought leaders to discuss “Coming to Grips with End-of-Life Care.” The program’s mission was to approach from diverse perspectives the challenge: How should we help people manage end-of-life care choices to maximize individual well-being and minimize social cost? The team explored how the narrative framework of storytelling could help provide a deeper understanding of the issue. Barbara shared the following personal story:
While I did not understand its importance at the time, a lesson from one of my first patients greatly influenced my relationship to the mystery. My first job after nursing school was as charge nurse on a ward of a busy New York hospital. There I met Richard, two years younger than I, and dying of leukemia. His parents were heartbroken and estranged from their son. They rarely entered his hospital room, instead spending days and nights in the solarium at the end of the hall.
One day Richard asked me how he would die and I answered him honestly. “You will probably start bleeding too rapidly to replace the blood loss with transfusions. Death will be painless and peaceful.” I also shared with Richard my hope that he and his parents would reconcile before that happened. At that time, I felt entitled to nudge him toward reconciliation. Twice I raised the subject; then Richard firmly put me in my place. “Oh, no. Not you, too,” he said. “Everyone has their own agenda for me. But this is MY death, and I’ll do it my own way.”
Richard was right. I had tried to impose my own desires and set him on a course that felt right to me. Instead of helping him ask questions, I was trying to give answers. This was the beginning of my supreme respect for the beliefs, values and preferences of any person close to death.
TED (Technology, Entertainment and Design) is a nonprofit devoted to generating new ideas by organizing conferences that assemble the most innovative minds across disciplines to solve big problems. Their annual TEDMED conference focuses specifically on health and medicine, bringing together 1,800 leading thinkers and doers from universities, hospitals, government agencies, and nonprofit organizations around the world. We are honored to be included in this community. To read more about the event and Barbara’s participation, visit the TEDMED 2013 Great Challenges page.