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.
What a moving piece. Brought tears to my eyes.
When I worked at Albany Medical center we had a cancer surgeon who admitted his terminal patients and wrote orders for very potent pain meds . When they were no longer adequate he started a Seconal drip. The families were always part of the process and were there when th patient died. American medicine has ignored the fact that death is part of life and has relinquished any responsibility for its management.
When I worked at Albany Medical center we had a cancer surgeon who admitted his terminal patients and wrote orders for very potent pain meds . When they were no longer adequate he started a Seconal drip. The families were always part of the process and were there when th patient died. American medicine has ignored the fact that death is part of life and has relinquished any responsibility for its management. so glad you friend was able to manage his own death. Like abortion ,in future, only thase with means will be able to manage their own care.
Why am I crying at work right now? Deeply moving.
I have seen many people die and known people that were ready to die and frustrated that it was out of their control. I also saw people die in the hospital with the help of their doctors in the 60’s and it seemed reasonable to me. I understand Washington state is making changes so it won’t be so difficult here but I don’t have that information. Your friend was very lucky as is so often the case with money.
Dr. Escandon, I am so very sorry for your loss, so eloquently described. I am so sorry for the loss of this vital, admirable man.
But, rather than a triumph and a “benefit” which ought to be more widely available, I believe your friend’s death is a terrible failure. A failure in many respects, by many parties – private and public. Additionally, its’ celebration, despite good intentions, I believe, does terrible harm.
Forty years ago this October, Daniel Callahan predicted a “social disaster” if we became indifferent to starving people to death – “On Feeding the Dying: In defense of sentiment.”
Tom Beauchamp and James Childress, though agreeing with Callahan that allowing patients to starve may be in their best interest, disagreed that it would cause a social disaster. In two editions of their textbook, Principles of Biomedical Ethics (3rd 1989, 4th 1994) they address what they saw as Dr. Callahan’s “overly stern warning” as an empirical question, unanswerable without the passage of time for the accrual of data. They put it eloquently:
“Rules in our moral code against actively causing the death of another person are not isolated fragments. They are threads in a fabric of rules that support respect for human life. The more threads we remove, the weaker the fabric becomes. If we also focus on the modification of attitudes, not rules only, the general attitude of respect for life can also be eroded by shifts in public policy. Prohibitions are often both instrumentally and symbolically important and their removal could weaken a set of practices, restraints, and attitudes that we cannot replace.” (4th ed. p. 230)
It is 40 years later. Society has changed a great deal. Mass shootings are regular occurrences; suicide rates have steadily increased; incidents of suicidal ideation, hospitalizations, and completed suicides now occur at younger ages than ever before. “End of Life” treatment routinely includes withholding nutrition and fluids as Meghan Morris described in the NEJM article, “Death by Ableism.” Whether under the rubric of medically assisted suicide or medically assisted death, it is the same “Hegelian, cold-blooded, utilitarian philosophy” that Leo Alexander warned had already made inroads in American medicine in his 1949 New England Journal of Medicine paper, “Medical science under dictatorship.
I would love to see the Hasting Center address the Daniel Callahan’s prediction, especially now that there is 40 years of empirical data with which to address the question. Was he right? Is your public praise of your friend’s tragic end a refutation or confirmation?
Such a beautiful reflection and tribute to your friend. Thank you for sharing this with all of us.
All comments are very much appreciated and, of course, I intended no offense or insensitivity to anyone by sharing my personal experience of a friend losing a friend. While organizing my thoughts about this piece, I anticipated, should it ever be made public, that differences of opinion with Simon’s choice, and the many implications of his decision would be rendered. This is a public forum and others’ opinions are obviously welcome and deserve consideration.
Self-determination in this context has been a polarizing topic for millennia, and I include my reflections with deep humility. If I have learned anything as a person, a partner, a friend, and an ethicist, it’s that contextual factors can and often do matter greatly; and that almost without exception, situations that seem very similar can be quite different. Here, I sought only to share my experience of bearing witness to a friend’s journey to the destination that he wanted. Any implication that Simon’s path was more praiseworthy than others’ wasn’t intentional, or the point of the essay. Discussing elements of self-determination that create tension within or imperil other important tenets of civil society is always, in my opinion, worthwhile.
As a person, I respect Simon’s wishes and the values that drove him to choose his path. As a friend, I feel a profound loss and, as you’ve all read, regret and misgivings. Knowing Simon’s suffering ended under his terms is a great comfort to me, though it remains to be seen whether that comfort in his passing is salutary in healing my loss and regret. I hope it will be, and I encourage other survivors to weigh in. I’ll consider writing a follow-up myself when I have more insight.
Thank you for your candid reflections on a painful loss. This is such a difficult and sensitive topic. I completely respect your friend’s feelings, and his insistence on self-determination. At the same time, I am troubled by the conflation of loss of function and independence (which are surely painful losses in and of themselves) with humiliation and indignity. It is our cultural indoctrination that teaches us that dignity is contingent on our abilities. It requires more nuance than most public discourse will bear, to sift out how to validate the feelings and support the agency of the individual, while at the same time to challenge the societal pressures and biases that teach us to experience humiliation and indignity on top of the frustration and grief that accompany a loss of function. There are many examples of people who live with disability, and do not experience it as stripping them of dignity and self-worth. I think we need to be asking how we can better affirm the value and dignity of disabled lives, without negating the experiences of people like your friend, or opposing their self-determination. Self-determination is not enacted in a vacuum, and great harm is done when health care professionals and loved ones see the decision that death is preferable to disability as a foregone conclusion. It’s challenging to sort out the issues, even before considering the impact of financial pressures, racial disparities, and other types of marginalization, all of which move the needle with respect to how a person values their own life. Anecdotal accounts like this are essential to understanding, but so is the very complicated big picture of how society and culture influence our values and our decision-making.
Dr. Escandon, you wrote a haunting piece. I continue to think about Simon and his family and friends.
Self-determination? Choosing to end his life? That he might have accomplished in the privacy of his own home. Therapists have long written about the near impossibility of preventing someone’s suicide if they are determined. Perhaps Simon was not so determined? Perhaps he hoped family and friends would rally in a way that dislodged death as the only solution?
Beyond that, he wanted someone else, someone medical to give him the lethal dose. Was it the social affirmation of the setting – public, not private? Was it the complicity of family -booking the reservations, joining him on the long plane ride, calling old friends to say good-bye? He hoped to see you again. Ambivalence? A belief in the after-life?
He sought public affirmation and it is public affirmation, institutions, and policies which, I believe, adversely effects public health .
My apologies for the long delay in my reply to your comment(s), Dr Weisman (Nancy).
Of course you raise many valid questions. Some, or perhaps none of which I can compellingly address, having written this piece from the (personal) perspective of “a close friend who happens to have had training in bioethics” versus from a purely academic or even a clinical ethicist’s position. You have my apologies if there was any ambiguity in that regard; and my apologies as well for what might ultimately be an unsatisfying post. It’s quite difficult for me to consistently think or write beyond the more personal aspects of this experience.
I can reflect only upon my memories of Simon as my friend – and the experiences & values he expressed to me during our friendship; and then, sadly, the post-diagnosis suffering, humiliation and frustration he expressed after we re-connected. He was an incredibly smart, decisive, proud, and self-sufficient person. He was also kind and generous and loyal and quirky. He wasn’t the type to directly seek the attention of the room. Rather, he was the guy who always showed up well-prepared for the exam & offered thoughtful opinions when asked.
So knowing all of that ~while not impossible~ I feel it’s unlikely that he sought public affirmation of his chosen path. Had he sought that, I suspect he’d have been less private about his terminal diagnosis, and (ultimately) about his death. But I’m cautious to presume. These are just conjectures.
If I had to guess ~and I am guessing~ my guess is that Simon sought the specific means he did, for the benefit of his survivors. While Simon dying by another means is difficult to contemplate, knowing how analytical and determined he was, there’s little doubt in my mind, particularly during the period when he mentioned “being stuck,” that all options were weighed as carefully as the one he chose. Considering the pain, physical disabilities, indignities, and legacy concerns he articulated to me before, I imagine myself being no less understanding had the manner of his death been different. But again. Impossible to say.
Everything you mention is a possibility. As his friend, I freely admit the probability of biases. As I read the essay again, maybe the greatest undertone was a selfish one, e.g., my relief at having avoided delivering a paternalistic speech if I’d picked up that last call. Especially so, as I’d never walked a mile with his pain, or in his shoes, or with his walker.
Dr Escandon, thank you for taking the time to write about your friend, Scott. I am sorry for your loss. I am also sorry for the loss Scotts family suffered. But, I am very thankful for the courageous decision that Scott himself made in sparing his family possibly years of suffering in taking care of him. I hope that they remember him from his good days.
I understand the decision that Scott made and why. I also intend to seek out the same end of life treatment that Scott did. Like Scott, I suffer from an ultra rare genetic disease that is progressive and disabling caused by inclusion body myopathy mostly but also pagets disease and frontemporal dementia. As of now, there is no treatment or cure. I have good days and I have bad days. I am constantly reminded every minute of every day that my body is dying and that at some point, the bad days will outnumber the good. I currently suffer from significant muscle loss and poor balance. I am in constant pain. I can barely walk, even with a cane to assist. My life will slowly descend into constant suffering, and dragging my loved ones with me and it is all out of my control. Like Simon, I have come to terms with the limitations we have over own own bodies and the inadequacies of our healthcare system. No doctor, even those who specialize in my rare disease, can say when we are 6 months from a natural death.
I have been very open with everyone I talk to (when the subject comes up) because I want to it be very clear that when the time comes and my qualify of life is gone, I will turn to my loving wife and say “I am done. It’s time for me to go”. My wife and I have discussed this. She understands my reasons and is supportive. The reason I have made my decision clear is that I know some close to me will blame my wife for a decision that is mine and mine alone. My worst fear is that some may even try to intervene to only prolong my suffering (and my loved ones suffering) and further deplete our financial resources which we have worked so hard to secure. I am intent on removing any doubt about my intentions later on when the day gets closer. I have documented my wishes in our family legal documents
I have had many conversations on this topic and a consistent themes often emerge: “moral code” and “respect for human life”. Many who are not yet forced to confront their own mortality often stick to these themes while ignoring what Scott and I have to think about constantly: the quality of life for me and those closest to me. It is not just the patients who suffer. In my conversations I am not looking for public affirmation. I do not believe Scott was looking for that either. The truth is, I don’t need it nor do I think it is appropriate. All I ask is that we are allowed self determination. It is my decision.
If I knew that I had self determination/control over my end of life journey, the burden this has on my mental health would decrease significantly. It’s a constant battle not knowing and having to prepare for every scenario in the future often comes at the expense of the now. I know others are having the same battle. To me, this is the real social disaster.
Death is inevitable for EVERYONE. Suffering should not be.
Todd – I’m so grateful you took the time to read and share your reflections on the piece about my friend Simon. I’m stricken by so many things you wrote, but your comment: “If I knew that I had self-determination/control over my end of life journey, the burden this has on my mental health would decrease significantly” really is the sentiment that (I believe) was at the core of Simon’s journey as well.
As friends, as family, and as members of societies & cultures, the desire to maximize each member’s time with us seems as fundamental as our desire to breathe. And as humans, we’ve arguably been more “successful” than any other species in our pursuit and development of materials and methods to prolong life. A large proportion of these measures didn’t exist a century ago. Yet some of these absolutely well-intentioned “successes” have rendered some of the toughest questions in the (relatively young) discipline of bioethics. Technological “capabilities” bump into and test social and cultural norms quite often these days; and I choose to walk in this area with great humility.
And in that regard, I’m so humbled as I reflect on the similarities between your and Simon’s journeys. I can say that it was only after a lot of posthumous reflection that I truly heard Simon’s expressions of those similar burdens on his mental health that you express. Those reflections (now) give me more insight into his strength of conviction for the path he chose. It also creates a nagging sense of regret that I could have/should have been more attuned to his words at the time. I’m glad that you have, as Simon did, made your wishes and values so clearly known to those closest to you. And like you (while I can only speculate) it’s difficult for me to conjure that Simon had any desire for a public endorsement of his decision. His desires, like yours, were to unburden his family and to end his suffering and humiliation – And being the gentle person that he was, I have little doubt that it was in that order.
Simon’s path is not for everyone, and one only needs to read the replies to this essay to understand what a complex and polarizing a topic this is. There are perils – and myriad and myriad and myriad contingencies that can’t possibly all be listed.
And in the circumstances, you so eloquently describe, Todd – Who am I? (And who is anyone?) to countermand your self-determination.
I’m so grateful that you made the effort to share your experience.
Rafael, sorry I referred to Simon as Scott in my post. I meant no disrespect. I hope all is well with you and Simon’s family.