Bioethics Forum Essay
Honoring My Friend’s Last Words
In the first season of the Netfix series “Never Have I Ever” we meet Devi, an overachieving Princeton-obsessed teenager returning to her Southern California high school after the sudden loss of her father. We learn, through flashback vignettes and John McEnroe’s voice-over, of Devi’s close relationship with her dad, and the post-traumatic stress that his sudden loss created. One of her most treasured possessions is a loving voicemail from him, which she plays when she needs encouragement. When her phone gets damaged, her despair at the prospect of never hearing her father’s voice again leaves her petrified.
I have a voicemail like that. It’s from a close friend of three decades whom I’ll call Simon. It came at 11:34 pm a few summers ago. I woke up, saw Simon’s name, looked over at my sleeping wife, and let his call go to voicemail. I still second guess that decision. I had no suspicion that this would be my last opportunity to speak with him.
Simon and I met at the gym and bonded over trail running, cycling, mountain biking, music, and microbrews. He was about 15 years older, an executive, while I was just starting my career as a clinical scientist and bioethicist. We had many talks over the years about the differences between norms and ethics, and I found him to be both wise and a little bit cynical. His depth of character, honesty, and pragmatism though, seemed only to exist in people in the movies. He achieved enormous respect and success in his career, and among his friends and family. He remains an inspiration to me.
In the early 2000’s we were both living in California, with some of the most spectacular running and biking trails on the continent, right out our doors. We took full advantage of the setting. Simon was very strong and not only kept up but pushed my group of friends, all of whom were 10 to 15 years his junior and very strong themselves. My friends loved him. They referred to him as a gentleman and an ambassador. Simon never missed a run, a ride, a race, or an opportunity for an IPA afterwards.
Late in the summer of 2015, Simon suddenly had trouble keeping up because of back pain. Undeterred, he went to yoga and Pilates, got PT, acupuncture, therapeutic massage–anything to get him back outside with us. Nothing worked. He stopped coming to runs and rides. And then to the social events that followed, and then he stopped returning my calls and texts. We lost touch.
The COVID-19 pandemic came. My wife and I moved to a place in Washington that Simon had always raved about. I called to tell him. He called me back the next day and apologized for the silence. His voice was hoarse and weak as he filled in the blanks about the last few years. Simon spoke of an enormous struggle and a lot of pain. He told me that when we were living in California, he had been diagnosed with an aggressive form of multiple sclerosis, a rapidly progressive and disabling condition. In addition to being in pain, he was utterly humiliated by the loss of strength, voluntary muscular control, and dignity. This is why he ended our contact. He apologized and explained that for someone so self-sufficient and so decisive, the thought of being dependent on others for assistance was unbearable. He mentioned a walker and that he was now forced to depend on his family for care.
I had a work colleague who was an expert in Simon’s condition, and he volunteered to call Simon to float the idea of joining a group for men with the condition. Simon embraced this initially, but his participation didn’t last long. He explained that since there were no therapeutic options for him, the pragmatism he refined in his corporate career made him impatient. Several more unanswered texts from me and another six months passed.
The next call I received was the 11:34 pm voicemail: “Hey; it’s Simon, I got your messages, it’s 8:30 in the morning here; I’m in Europe……(pause)….and I’ll say goodbye for the final time. So, you take care my friend. And, um, (pause) hopefully we’ll see each other again at some time. You be good and take care and be safe, Ciao.”
In our thousands of hours of conversations over three decades, we’d never discussed the topic of self-determination and what I came to learn was our shared belief in a right to responsibly determine one’s own fate. Simon knew I had training in bioethics, but he never asked me about anything to do with end-of-life issues. California, the state where he was living, had legislation permitting physician assistance in dying. But, in hindsight, I can see that someone as decisive as Simon would have found the process to be burdensome and full of paternalistic hurdles, including the requirement that a patient has a terminal illness with an estimated life expectancy of six months or less. When we did discuss his condition, Simon told me repeatedly about the magnitude of humiliation he felt because of the loss of his dignity, and the pain he felt when he imagined that his adult children, siblings, and friends would only remember him in his current condition. “It’s so fucking cruel,” he said. “No one can tell me when my last six months will begin or end, so I’m stuck.”
Had I taken his call, I fear I’d have walked him through the epistemology of why most state medical aid-in-dying statutes in the United States were constructed the way they were–the safeguards against depression influencing patients’ decisions, the conflicts with professional medical codes, liability, and on and on. There’s not a shred of doubt in my mind that his decision to go to Switzerland, which permits assisted dying with few restrictions, such as having a terminal illness, was made with full capacity. His impatience came from a deep understanding of his ultimate prognosis, and from decades of informed decision-making in his career. This was a proud person who took great care of himself his whole life and simply wanted to end his personal indignity and to unburden his family from present and future care obligations. He had reasoned through all the implications. His family was supportive of his decision and present when he died. At his memorial, everyone remembered Simon’s warm and sometimes cynical personality at peak health. There was no need to discuss his last few years.
Simon’s suffering, indignities, and burdens are now gone, all according to his terms. What greater respect can we offer to a person? I recognize that this was a best-case scenario, as Simon was a person of means, with full capacity, who could travel to Europe to have his wishes respected on a schedule he defined. That option is not available to many who suffer similar pain and indignity but have neither Simon’s agency nor means.
I’ll always feel like I missed an opportunity by sending his call to voicemail. In doing so, though, I hope his last thoughts of me were as a supportive friend. I like that a lot better than imagining his last encounter with me being one that prolonged his suffering by talking versus listening.
So, you take care my friend. And I sure do hope we see each other again.
Rafael Escandon, DrPH, PhD, MPH, HEC-C, is a consultant in research ethics and clinical R&D to the biotechnology industry in Bainbridge Island, Wash.