Nearly every week for the past two years, I’ve had the pleasure of visiting a man, who I’ll refer to as “K”, at a senior living facility in Madison, Wisconsin. In our first few meetings, I was astonished by how much we had in common. It was as though I was seeing myself through a funhouse mirror, where the mirror showed me what I’d be like if I were 95 years old, dashingly handsome, brilliant, and Danish. Sadly, I am none of those things, but our personalities were remarkably similar and dovetailed perfectly. The relationship we have developed since has been incredible.
We were both free-spirited and curious people who loved investigating the world. K studied chemical engineering in college, while I studied neurobiology and computer science. Naturally, testing assumptions and asking questions were two of our favorite pastimes. We also shared a strong distaste for small talk, so our conversations quickly evolved into playful explorations of life’s perennial questions. Notably, we spent a considerable time discussing death, dying, and what we believed much of society got wrong about the two. In our two years of meeting, K and I discussed ideas regarding death and dying that, if taken seriously, could radically change how we live and die.
“Why should I fear death? If I am, death is not. If death is, I am not. Why should I fear that which can only exist when I do not?” – Epicurus
Drawing on wisdom from the ancient Stoics, K and I mused on how fearing death is nonsensical. When thinking about death, people often wonder what it would be like to be dead. But implicit in their wondering is a misunderstanding of death itself. If something is dead, then there is nothing that is like to be that thing. Thus, it’s contradictory to say that a thing is both dead and having an experience. Do we fear what it was like not yet to be born? This is a flawed question because we weren’t alive yet, so we couldn’t have been having an experience worth fearing. There is nothing that it is like to not yet be born, just like there is nothing that is like to be dead. When considering death in this manner, it seems that to fear death is to understand death’s implications.
To fear dying, however, is a separate matter. K and I would posit that a fear of dying is entirely justified, as dying often entails a slow and painful process of mental and physical deterioration. If the thought of slowly losing your grip on reality without the ability to feed yourself doesn’t make you uneasy, I’m not sure what will. In our discussions of death and dying, K recommended a couple of books. One was aptly named On Death and Dying by Elizabeth Kübler-Ross, and the other was Being Mortal by Atul Gawande. Kübler-Ross and Gawande are physicians who utilized their books to illustrate the uncomfortable reality of getting older. They describe in gruesome detail the suffering that many older adults endure in their last months, and they suggest that there might be a better way for people to navigate this final phase of life. When K shared these books with me, both his wife, to whom I’ll refer as “KW”, and my grandfather had advanced Alzheimer’s disease. Also, my grandmother was physically crippled and unable to care for herself. Confronting the troubles of old age in our own lives made the writings of Kübler-Ross and Gawande resonate on a personal level. They pushed us to think more seriously about how our culture views the challenges faced by the old and how our medical establishment often urges patients to endure more pain than is warranted.
"I want to go when I want to go. It is tasteless to prolong life artificially. I have done my share; it is time to go. I will do it elegantly." – Albert Einstein
We thought it far too common for those near death to engage in drastic, life-prolonging, measures when they are without prospects of long-term improvements in well-being. Gawande’s writing supports this sentiment. For example, he describes a patient who required regular needle drainage procedures to relieve fluid buildup from her metastasized lung cancer. This patient was guaranteed to be dead in weeks, yet they continued the procedures and prolonged her suffering. As we learned from Miracle Max in The Princess Bride, “There's a big difference between mostly dead and all dead. Mostly dead is slightly alive.” It seems we’ve taken Max’s teaching to heart, as we grasp at every last drug or operation that will keep the mostly dead alive. But what’s the point? Why do we fight so hard for every last breath?
It’s because our culture overvalues quantity and undervalues quality of life. Our narrow focus on surviving, rather than thriving, ails us. This focus is understandable, after all, because humans wouldn’t be around today unless they had an innate drive for survival and self-preservation. However, our factory setting’s utility diminishes over time. I would argue that there exists a point in every life at which attempting to ward off death only results in greater suffering. It’s at this point when death might be preferable to life. Is a life worth living if it consists exclusively of agony, without a silver lining? No. It is not. Taking our predicament seriously, it’s horrifying to think that so many sick and elderly adults are inundated with pills and potions – protocols and procedures – that only draw out their misery.
K and I wondered why we don’t have better ways of dealing with death, so we considered some alternatives to the status quo. Knowing of many friends and family members who went out not with a bang, but with a sad whimper, we entertained methods like gas masks, physician-assisted suicide, and the Sarco, a painless suicide pod, as preferable means of dying. These kinds of tools could keep us from being dragged, kicking and screaming, down the path of decrepitude toward our inevitable demise. Furthermore, they could be used to democratize death. If we value the freedom to choose how we live, shouldn’t we also value the freedom to choose how we die? After all, our death is merely our final moment of life. Article 5 of the Universal Declaration of Human Rights is meant to ensure no one is subjected to torture. Yet, in some bizarre way, the old and sick who are denied this freedom are subjected to just that. We can do better. We must do better.
Imagine a culture in which the old and sick can die precisely how and when they choose. Suppose an older woman, let’s call her Liv, has stage 4 hepatocellular carcinoma. Each day is harder than the last, and she’s ready to die. Liv loved hiking in the mountains, and she loved nothing more than sitting atop a summit, staring in awe at the grandeur of nature. So, to put a bow on her grand adventure, she decides to take one final trip to her favorite mountain range. Here, she will be escorted to her favorite peak by those responsible for taking care of her, as well as any loved ones who she wants by her side. Finally, as she takes in the beauty of the world with tears in her eyes, she’ll sip on her daiquiri of death and peacefully pass away.
Now, consider a man similar to Liv, let’s call him Cole, who has stage 4 colorectal cancer. Like Liv, Cole is ready to die. At this stage, Cole cannot do most of the things he enjoyed throughout his life, but he still revels in the sound of music. A classically trained cellist, he gravitates strongly toward the works of Bach. He no longer has the dexterity required to play, but listening to Bach makes him feel as though he could, fingering the notes in his mind as the music dances on his eardrums. Cole recently learned about the Sarco pod, and he thinks that would be the perfect way for him to end his life. He’ll have a pod constructed in his home where he’ll lay inside and listen to Bach’s “Cello Suite No. 1 in G Major, Prélude”, his favorite piece. With a smile on his face, under music’s powerful spell, Cole would press a button, and the pod chamber would slowly fill with nitrogen, bringing him to rest. Almost nobody wants to die a painful death, but few have considered what it would look like to make dying a pleasurable experience. This, I believe, is worth striving for.
Over these past two years, K helped me understand that some lives are no longer worth living and that it’s essential to let go of our loved ones when they are ready. In 2023, KW’s condition began rapidly worsening. In a series of falls, she broke several bones and underwent surgery. Through it all, K sat bravely, but helplessly, by her side. In October of 2023, KW peacefully passed away. However, to K, the woman he knew and loved had died long before then. In her final months, she no longer remembered who K was, didn’t remember the beautiful lives they shared, and couldn’t converse. The progression of her Alzheimer’s had seized all means by which she could meaningfully communicate with K. To K, KW was gone. Only her body remained.
K spoke to me about how troubling it was that there was no better way of dealing with his wife’s situation. Thousands of dollars were spent on health care to sustain a “mostly dead” person who could no longer experience deep joy in life. Although KW’s final days were peaceful, K felt it a shame that her life had been reduced to so little. KW was bedridden, unable to do the things she loved, but because of the current laws constraining medical practices, holding KW in a state of incapacitation was the only acceptable course of action. She didn’t die free.
Immeasurable amounts of pain, grief, and resources could be spared if we lived in a society where choosing how we die was standard. Dying shouldn’t be a struggle against the inevitable, but a rite of passage that celebrates our commitment to life, as well as our acceptance of death: Death-By-Design, not Death-By-Deterioration.
“Life, if well lived, is long enough. “ - Seneca
Resources:
Sarco Pod; Exit International; Suicide Tourism; Death With Dignity: State Map
Bro this is beautiful, I can't believe you've been hiding this talent for so many years!