Art, Autonomy, and the Ends of Life
How we think about the end of life has a lot to say about how we think about the ends of art.
On January 24th, 2024, my parents ended their lives. They were side-by-side, in a bed, with me and my sister sitting next to them and holding their hands. We were in Switzerland, just outside of Basel, and had traveled there for this purpose, Switzerland being one of the few countries in which Voluntary Assisted Dying (VAD), or assisted suicide, is legal and available to foreign nationals.
Had you seen my parents in the months and weeks before they died you would not have expected them as candidates for this particular end. My mother in particular was described as “vibrant” by many of her friends and acquaintances, though she had conditions that were slowly diminishing her self-sufficiency. My father’s dementia was more apparent, both to those who knew him well and to acquaintances who had only intermittent contact with him and so witnessed his gradual decline as swift drops in what we euphemistically called his “processing speed.”
Both of my parents had watched their own fathers succumb to the slow degradations of dementia and illness and knew that this was not what they wanted for themselves or for their children. For almost as long as I can remember, ours was a family that marked every Christmas holiday with a “death and dying” conversation, in which my parents updated me and my sister on their wishes, their DNR orders, their living wills, their advanced health care directives — the ever-changing “administrivia” (as my father called it) that one uses to try to plan for a good death, or to avoid a bad one.
One might imagine these conversations as solemn, but they were always punctuated, as we thought such conversations must be, with dark and irreverent humor. After all, ours was the family that crowned its Christmas Tree with a rubber chicken. To the end my mother joked that she was going to a Swiss Finishing School. Solemnity was not our thing.
Whether theirs was a “good” death is hard for me to say. I can say this, however: in those last months and weeks they were surrounded by friends and family and love. They grieved their own passing with those who loved them most. Their death was peaceful, it was devoid of physical pain, and it is what they chose.
My own coming to terms with my parents’ decision has involved a new line of reading. Amy Bloom’s In Love: A Memoir of Love and Loss was given to me by my mother. It is a touching and important story about Bloom and her partner Brian Ameche, who begins to lose his mind to Alzheimer’s and, like my parents, decided to end his own life by going to Switzerland. I confess to never finishing Bloom’s book, for no other reason than that we were living a different story at the time, and the emotional resources Bloom was offering weren’t the ones I was looking for.
As pretentious as it sounds, I began reading Albert Camus. The Myth of Sisyphus had been important to my maternal grandfather, Kurt Borchardt, a German Jew who arrived at the University of Chicago in 1934 after it became illegal for him to obtain a law degree in Germany. Kurt had become involved with what was once known as the Hemlock Society, a right-to-die advocacy organization that was active in the 1980s, after watching my grandmother, Narnie Puryear, undergo an extended hospital stay and much suffering from the inoperable brain tumor that would eventually kill her at the age of 61.
It was Kurt whose experiences and commitments shaped my family’s unique attitude towards death. He had a living will and a DNR. He found the doctors who would prescribe him the pills he would need to end his own life on his own terms when the time came. I recall once looking in his medicine cabinet during one of our visits to him at the inaptly named Casa de Mañana, an assisted living facility in La Jolla, CA, and wondering which of the amber bottles contained the lethal drugs. When my parents informed me and my sister of their own commitment to end their lives, I thought Camus might provide me the emotional and intellectual recourses he had presumably offered Kurt for contending with both the loss of his childhood homeland and the loss of his wife. Having read only some of his work long ago, I had forgotten how Camus would be, and must have been, Kurt’s antagonist in his efforts.
Camus’s preface to my edition of The Myth of Sisyphus states his position plainly:
The fundamental subject of “The Myth of Sisyphus” is this: it is legitimate and necessary to wonder whether life has a meaning; therefore it is legitimate to meet the problem of suicide face to face. The answer, underlying and appearing through the paradoxes which cover it, is this: even if one does not believe in God, suicide is not legitimate. Written fifteen years ago, in 1940, amid the French and European disaster, this book declares that even within the limits of nihilism it is possible to find the means to proceed beyond nihilism…Although “The Myth of Sisyphus” poses mortal problems, it sums itself up for me as a lucid invitation to live and to create, in the very midst of the desert.1
Those familiar with Camus will recall that, for him, life is “absurd,” devoid of meaning, of hope, of purpose, but that it is only out of this absurdity that life can be affirmed as an act of creation, affirmed through acts of creation, acts of making art. As Camus would write, from the absurd he drew three consequences: “my revolt, my freedom, and my passion: By the mere activity of consciousness I transform into a rule of life what was an invitation to death — and I refuse suicide.”
Kurt did not ultimately pop the appropriate amber container and end his own life. His own dementia changed his mind. He persisted in time to commit a number of absurdities, clichés all, the consequences of which my parents, and particularly my mother, had to endure and undo. There was no refusal, but nor was there revolt, or freedom, or passion, none that one could count as decidedly his, at least. The dementia saw to that. Instead, he choked on his food, and there was a DNR.
In his Notes on Suicide, Simon Critchley writes with regard to Camus:
It is not at all clear to me that Camus’s argument is sufficient to establish the illegitimacy of suicide and the idea of absurd creation can in no way justify any prohibition of self-killing. Indeed, I have always sensed a tension in Camus between the refusal of hope that is the premise of absurdity, and the hope that informs and infuses his idea of absurd creation. Camus risks giving us back in some new form what he had initially taken away. If suicide is not a legitimate response to the absurd, then absurd creation cannot be a definitive answer to Camus’s opening question: is or is not life worth living?2
Critchley’s short book is very much an answer to Camus’s opening question, and he is adamant that, yes, life is worth living. The thing that underwrites that life, not its worth but its being, is not the creative act, but the decision to live it, which can only gain meaning in the context of the decision to end it.
As a counterpoint to Camus, Critchley leans on the work of Jean Améry, the Austrian writer (born Hanns Mayer) who survived Auschwitz and made that survival the topic of much of his work. Améry writes that, in the context of the inhuman conditions of the concentration camps:
a requirement of life is here — and not only here — the demand to escape a life lacking in dignity, humanity, and freedom. And so death becomes life, just as from the moment of birth life is already a process of dying. And now negation all at once becomes something, even if good for nothing. Logic and dialectic fail in tragicomic agreement. What counts is the option of the subject.
The emphasis there is my own. Our capacity to kill ourselves is a potential act of freedom, even as it is an act that, should it be done, cancels the very freedom it engenders. As Critchley quotes Améry again, “a suicide is a human being,” not, or not just, a person deserving of our concern, care, and compassion, but a paradoxical state of being (a being that is its own negation) which is uniquely, or fundamentally, or definitively human.
Much of Critchley’s book is an argument against the knee-jerk moral abhorrence that informs most people’s feelings about suicide, feelings that themselves inform most of the laws and regulations that govern how people can legally end their lives, if they can at all. Much of that moral abhorrence stems from a religious past, in which the taking of one’s own life was an affront to the sovereignty of God. “Religions like Christianity prohibit suicide,” Critchley writes, “because of the threat of insubordination that it poses: the refusal of the lordship of God or King or Church or State.” To challenge this moral abhorrence does not, however, amount to affirming or glorifying suicide. On the contrary, as Critchley writes quite beautifully at the end of his book:
Each of us has the power to kill ourselves, but why not choose instead to give oneself to another or others in an act of love, that is, to give what one does not have and to receive that over which one has no power? Why not attempt a minimal conversion away from the self-aversion that lacerates and paralyzes us towards another possible version of ourselves? Is this not finally more courageous? Such is perhaps what Nietzsche calls the pessimism of strength as opposed to an optimism of naivety and weakness. True pessimists don’t kill themselves.
When I read this passage, I am confronted with a series of questions, the answers to which I know, but I do not know if the answers are right: Why were my parents not willing to “give themselves” to us to care for in their infirmity? The answer to that question is their experience with their own fathers, and their not wanting the same sadness and indignity to befall them, or us, their children and our families. Was there another version of themselves that they were too cowardly to accept? The answer to that question could no doubt be voiced by my parents’ friends, none of whom would describe them — my mother in particular — as cowardly. Their decision was acknowledged, to them and to me, both before they died and after, as indisputably brave. Were they naively optimistic about their own weaknesses and what the future held? Here I have no doubt the answer is no. But were they pessimistic about their future? In one sense they had to be; I’m sure they feared what was to come, and fear and pessimism go hand in hand. But here again I think the answer would have to be no. They were not true pessimists. They were realists. They were free. And they acted.
There is a word that describes a person who is free to act, who is capable of a free act: we say they are autonomous, or that they have or enjoy autonomy. The loss of autonomy is one of the main reasons often supplied by those who would seek out Medical Aid in Dying (MAiD), as it has come to be called. And because it is one of the main reasons, autonomy has become a target of the critics of MAiD.
Most of this criticism takes the shape of a typical WSJ editorial, which declaims an increase in MAiD numbers as proof of a State’s soulless disregard for the “sanctity” of life, especially those States, like Canada and the U.K., who have socialized medical systems, and so presumably an incentive to promote MAiD as a cost-saving measure.3 Positioning themselves as a noble resistance to the unjust coercions of the State, which to their minds would just as well kill its citizens as heal them, these critics could be mistaken as ardent defenders of autonomy. One need only read them to learn otherwise.
Writing in The Dispatch earlier this month, Leah Libresco Sargeant, rehearses many of the standard arguments against MAiD as part of her own “conversion” story from the “death-with-dignity” position she once held. Sensing the bad-faith argumentation often required by other critics who distort the numbers or cherry-pick from extreme cases (though she does this as well), Sargeant comes to the conclusion that “offering compelling resistance to a MAiD regime requires giving an account of how to die well that is not equivalent to dying painlessly or predictably.”
That account (predicable if not painful to read) comes straight from Christian teaching, which holds that because we enter the world as infants — weak, dependent, innocent — we can and should accept, if not embrace, such vulnerability (before God) once again at our ends. “Our trajectory is an orbit,” Sargeant writes, “not an escape.” And while “the Christian understanding of the human person is as a created being — someone for whom autonomy never was or is a possibility,” Sargeant aruges that even a good “materialist” can admit that no one is ever “truly independent,” and that “moving past the desire for ‘death-with-dignity’ requires admitting that autonomy is not the ordering principle of a human life.”
One has to ask: Can Sargeant genuinely believe that the best argument against MAiD is the infantilization of the sick and the dying? Even if autonomy weren’t the ordering principle of a human life (it is), why couldn’t it be the ordering principle of human death, of dying well? It’s not that critics such as Sargeant would rather someone not choose the time and place of their own ends, it’s that they can’t believe someone would; and belief trumps choice. Put slightly differently, it’s not one’s end-of-life prospects that such critics truly want to ease; it’s one’s autonomy that they truly want to erase.
If that seems extreme, here is how Sargeant closes her piece: “no human person has ever fully possessed bodily autonomy, and the legal right to destroy the body cannot make this aspiration achievable.” Though this might make one wonder what suffering Sargeant would be willing to endure at the hands of others, the true question is what suffering she wouldn’t be willing to inflict on others in pursuit of her piety. For such people, your submission is their nobility.
What about a critic of MAiD whose authority issues not from his religious beliefs, however, but from his art? The novelist and literary critic Michel Houellebecq, in this respect, is unequivocal. Writing in 2021 at the time that the French National Assembly was considering legalizing MAiD, he proclaimed: “when a country — a society, a civilisation — gets to the point of legalising euthanasia, it loses in my eyes all right to respect. It becomes henceforth not only legitimate, but desirable, to destroy it; so that something else — another country, another society, another civilisation — might have a chance to arise.” Houellebecq has since elaborated these sentiments in an essay for Harper’s, published in 2023 and titled “The European Way to Die,” in which he writes about France’s legalization of euthanasia:
We are demonstrating once again our feeble respect for individual liberty and an unhealthy appetite for micromanagement—a state of affairs we deceptively call welfare but is more accurately described as servitude. This mixture of extreme infantilization, whereby one grants a physician the right to end one’s life, and a petulant desire for “ultimate liberty” is a combination that, quite frankly, disgusts me.
As someone who admires Houellebecq’s work, I find myself more confused than troubled by his arguments. It would seem clear that Houellebecq holds some idea of individual liberty in high regard, just not the “ultimate liberty” that would allow someone to end their own life, specifically it seems when that liberty is taken with the assistance of a physician. As he writes earlier in the same piece, “When I hear that someone I know has committed suicide, what I feel isn’t respect—I don’t want to exaggerate—but neither is it disapproval, nor derision.” What exactly is it that Houellebecq disapproves of then?
Like Sargeant, Houellebecq takes issue with supporters of MAiD whose arguments turn on questions of pain or predictability to make their case. For Houellebecq, these are the two big “lies.” First, to the claim that physical suffering is what many recipients of MAiD seek to end, Houellebecq replies that the existence of morphine and its opioid derivates mean that, in his words, “physical pain can be vanquished” without any need to contemplate cutting one’s life short. Second, such a cutting would also preclude, according to Houellebecq, “the moment of farewell”:
— a last chance to see certain people, to tell them what you may never have said before, and to hear what they may have to say to you. To cut short these death throes is both impious (for those who believe) and immoral (for anyone). This is the consensus of the civilizations, religions, and cultures that have gone before us, and this is what so-called progressivism is preparing to destroy.
One feels the need to ask here whether such “death throes” could be properly preformed if one were so hopped up on opiates as not to recall that there are these things called “people” who one might presumably care to talk or listen to, and that includes oneself. It’s called oblivion for a reason. Such a state is exactly equivalent to the servitude and infantilization that not only disgusts Houellebecq but also, it would seem safe to say, most candidates for MAiD seek to avoid.
Houellebecq doesn’t appear to be so committed to this illogic anyway, because just a moment later he concedes that: “This moment of farewell can happen during an assisted suicide—in which case we would have something like the scene of Socrates and the hemlock.” A scene which, presumably, Houellebecq accepts, if not admires. “But,” he goes on, “it cannot occur if the moment arrives in accordance with advance directives.”
Now, there may be a philosophical or even a literary case — there certainly is a religious one — to be made that, as Houellebecq holds, “agony has been deemed a crucial aspect of our existence,” but either that agony today can be “vanquished” through the administration of self-abnegating drugs (certainly a scourge in wealthy, Western countries) or — and this must be Houellebecq’s actual position, difficult though it may be to parse — that agony must be endured and accepted as a choice, one made without the support or the intervention of the law or the State — i.e. not in accordance with advance directives. Just what Houellebecq might mean here again isn’t entirely clear. No DNRs? Whether or not the agony my grandfather must have experienced when choking on his food was a “crucial aspect” of his existence, surely Houellebecq can accept it wasn’t his choice.
But if Houellebecq is less than clear in his opinion writing about what he thinks is wrong with assisted suicide, state sanctioned or otherwise (on the evidence he is rather confused), he at least appears more genuinely conflicted in his creative work.
Annihilation, Houellebecq’s most recent novel, is a book about the ends of life. Late in the book — for this not what the whole of the book is about — the main character, Paul Raison, is diagnosed with mouth cancer, the treatment for which, in addition to various chemo and radiotherapies, would entail the surgical removal of the tumor, the removal of part of Paul’s lower jaw, potentially the removal of his chin, and finally the removal of Paul’s tongue, “the whole of the moving part.”4
Paul decides against this treatment, all but assuring that he will die prematurely from his cancer. When Paul’s sister Cécile discovers that he is not going to pursue treatment, she accuses him of committing suicide (which their younger brother had done earlier in the book). “That’s not it…!,” Paul pleads. “I’m not committing suicide, I’m choosing one treatment rather than another.” When Cécile doesn’t accept this claim, or Paul’s weak explanations that a less aggressive course of treatment could save his life, Paul adds, as if in reassurance of his sister’s faith, and a nod to religion in general: “And besides, you can pray for me, if you like.”
At this, the hinge of the book, Cécile responds in anger:
“There’s no point praying in your case,” she shouted, “it would almost be blasphemy, prayer can’t have any effect on you because basically you don’t want to live. Life is a gift from God, and God will help you if you help yourself, but if you refuse the gift from God there’s nothing he can do for you, and basically you don’t even have the right to refuse it, you might imagine that your life belongs to you, but that’s wrong, your life belongs to the people who love you, you belong to Prudence [Paul’s wife] first and foremost, but also a bit to me, and maybe to other people that I didn’t know, you belong to other people, even if you don’t know it.”
This is the argument that Sargeant wishes to make, but it’s not an argument that can be made in the third person, for others. It can only be made by someone with a claim to the life whose end has become immanent.
After completing a half apology for losing her temper, Cécile says, “I don’t want you to die, Paul.” To which Paul replies, “I don’t want them to cut out my tongue.”
This ends the argument. Cécile apologizes. “Forgive me,” she says, “Everything I’ve said to you was completely stupid.” It’s not, and we and Houellebecq know it. But what Houellebecq seems to know as well, is that the decision is not Cécile’s, as much as she might believe, like Sargeant and others of the sacred persuasions, that “autonomy is not the ordering principle of a human life.” Paul’s decision is his own. His life may belong to others. But his death belongs to him. And autonomy orders it.
Now, it could be argued that, like so many of Houellebecq’s main characters, Paul is an anti-hero or a tragic type. His story is not affirmed but given to us as an allegory of how modern life has lost its moral purpose — a position that Houellebecq surely holds. But in Paul’s story — his loose flirtations with religion (which mostly involve him visiting beautiful churches; easy to do in France), his appreciations of the landscape and the natural world, his rekindled intimacies with his wife — we are given a character that we don’t merely identify, but one we can identify with. Paul’s decision isn’t presented as another act for us to judge; it is a decision that is given to us to recognize as his, and only his.
The highly-regarded and historically canonized artist Eva Hesse was three-years old in 1939 when her parents brought her to the United States from Germany. She was 10 when her mother committed suicide. And she was 34 when she died from a brain tumor. In the notebooks that she kept during the months and weeks prior to her death, she wrote the following: “When one is confident and can act, decide, do—then [there] is no problem. Problems exist where one is indecisive, fearful, reluctant. Therein lies the hassles. Where I worry I cause worry and something goes or can go amiss for life to go as clear as art.”
“Act, decide, do—” Herein lies the autonomy of art and of the artist. It is the autonomy of the decision.
For much of the modern period, this is not how we thought about the autonomy of the work of art. Art’s autonomy rested in its distinction as something different than entertainment, decoration, or mere commodity. It defied, often only in the artist’s or the curator’s or the critic’s mind, its instrumentalization. Some art was more and some less successful at creating this useful fiction (which is not to say it wasn’t real or relevant), but the autonomy of art was always understood as something that belonged to it, something it achieved, once its ends were recognized as its own.
In this, art as art was considered a reflection of human autonomy. In our recognition of the work as a work, as a work of art and not some other thing, we were engaged in the same act of recognition through and by which we come to see ourselves, and others, as full and free subjects.
But after thinking about the ends of art in the context of the ends of life, I believe there is a different way of thinking about autonomy. Not just, or not only, the autonomy of recognition, of art and life reflecting one another by their own ends, but as the autonomy of decision, of the free act, of what Améry calls the “option of the subject,” the option that opens up a space, as Hesse says, “for life to go as clear as art.”
Life and art were intertwined for Hesse, as she told Cindy Nemser in her last recorded interview in 1970:
For me, as I said before, art and life are inseparable. If I can name the content, then maybe on that level, it’s the total absurdity of life. If I am related to certain artists it is not so much from having studied their works or writings, but from feeling the total absurdity in their work.
Camus is there in Hesse words. Perhaps she was thinking about The Myth of Sisyphus and perhaps not. But we know that at the time she was speaking into Nemser’s recorder she was dying. If art and life are inseparable for Hesse, so are art and death.
When asked by Nemser which artists she relates to in feeling the absurdity in their work, she mentions, among others, the sculptor Carl Andre. As she tells Nemser, “I feel very close to Carl Andre. I feel, let’s say, emotionally connected to his work. It does something to my insides. His metal plates were the concentration camp for me.”
These words have been poured over in the literature on Hesse and Andre, on minimalism and on the post-war Avant-Gardes. No one really knows what Hesse meant. But if Camus was close, then we could do worse than think that these words have something to say about the proximity of life and death in Andre’s art, and in Hesse’s.
I have felt close to Carl Andre too. A good portion of my Ph.D. dissertation looks at what kinds of conditions had to obtain for Andre to be able to place grids of metal plates on the ground and to have them be legible, be recognized, as art. Though I never addressed it directly, I have always been interested in what kind of “act” that was, though the history and theory of Andre’s acts, those that preceded the “metal plates,” and those that followed them, are well documented.
As happens with children, my interest in Andre became my parents’ interest too. One of my most cherished gifts from them is an Andre poetry piece which they gave to me in my early years of graduate school. I can still recall my father awkwardly trying to navigate the curious rituals of purchasing even this very minor work of art from Paula Cooper’s gallery.
Though Andre’s reputation has suffered, justifiably one can believe, I was still sad to learn of his death. It was not at the time and the place of his own choosing, but just coincidentally, it occurred on the same day as my parents’ final, free act.
Albert Camus, The Myth of Sisyphus (Vintage International Edition, 2018).
Simon Critchley, Notes on Suicide (Fitzcarraldo Editions, 2020).
This economic analysis has received extended treatment, with one critic suggesting that MAiD will ultimately degrade treatment options because doctors and health systems will opt for MAiD instead of pursuing breakthrough treatments for cancer, cardiovascular diseases, or neurological conditions such as Parkinson’s, ALS, or dementia.
Michel Houellebecq, Annihilation, trans. Shaun Whiteside (FSG, 2024), 446.
wow this is such a brave, vulnerable, and thought provoking post. thank you for sharing