My sister, Cathleen, recently passed away. She had been in a coma for nearly a year from an accidental fall while visiting her daughter in New York. She lay on a sidewalk after apparently tumbling down the stairs and bled out for nearly 20 minutes until an ambulance arrived. She never regained consciousness.
Many, many times over the past year I wondered what she would have wanted if she had known of her cruel predicament. It was hard to imagine that a woman whose credo was 'live, live, live' would have wanted to waste away in a nursing home unconscious with little chance of recovery. Yet she was a fighter. Would she have wanted to grasp for every final bit of air before she breathed her last? Or at some point would she have wanted to just die peacefully?
I never had a conversation with my sister about end-of-life matters. Thankfully I also never had to make any fateful decisions since I wasn't her legal guardian. Her husband and two daughters were ultimate authorities. But the question still gnaws at me even today, several weeks after her death. What would she have wanted? And in that time, I've thought a lot about what I would want if I were in that situation.
Ellen Goodman, the Pulitzer Prize winning columnist from the Boston Globe, never had a conversation with her mother about the end of life either. In the last years of her mother's life, Goodman found herself swirling in a fog of decisions. They were basic decisions about care, treatment and survival - decisions that her mother was incapable of making:
In the last year of my mom's life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.
After her mother's death, having keenly observed numerous great social movements throughout her years of reporting, Goodman wanted to create another movement. And so The Conversation Project - an initiative "dedicated to helping people talk about their wishes for end-of-life care" - was born.
I spoke with Goodman for a 1:2:1 podcast when she was out west to evangelize her project and to meet with VJ Periyakoil, MD, director of Stanford's Palliative Care Education and Training. As a great journalist Goodman knows how to communicate, and she articulately laid out why The Conversation Project is landing at the right moment to launch another historical social movement.
Previously: Talking about a loved one’s end-of-life wishes, The importance of patient-doctor end-of-life discussions, KQED health program focuses on end-of-life care and Facing mortality