Dispatches from the Deathworks

As journalist Katie Engelhart’s The Inevitable: Dispatches on the Right to Die begins, we’re introduced to “Betty,” an elderly New Yorker who plans on buying the lethal pet poison Nembutal from a store in Mexico and use it to take her own life, quietly and peacefully, in the comfort of her Upper West Side apartment. Betty doesn’t have a debilitating or fatal disease. She hasn’t been diagnosed with a mental illness. She simply “has no interest in growing very old and dying very slowly.” She’s also made a death pact with two of her best friends that the first person who gets Alzheimer’s has dibs on the Nembutal.

When we think of the so-called “right to die,” we typically imagine people suffering incomprehensible pain or people who are already dead in all but name, living lives mechanically prolonged by a series of complex machines and tubes seething with various fluids. But, as we learn from The Inevitable, as the “right to die” has grown into something of a movement, the conditions under which people believe they’re owed a death has simultaneously broadened. As Engelhart writes:

We do know something about what motivates patients to choose early death, in the states where aid in dying is legal. What surprised me most, looking through the Oregon Health Authority data, was that most people who ask to die are reportedly not in terrible pain, or even afraid of future pain. The vast majority cite ‘losing autonomy’ as their primary end-of-life concern…Patients in Oregon must have a terminal illness to qualify for assisted dying, but in the end, they choose to die for more existential reasons: in response to suffering that falls outside the established borders of modern medicine.

Ultimately, this is also where the value of The Inevitable lays. Engelhart, a veteran correspondent for VICE and NBC, who previously studied philosophy at Oxford, has created a well-researched account of people who exist at the very periphery of both the medical and legal world of state-sanctioned suicide. As Engelhart explains in the introduction to her book, “I…knew that while most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them. Away from medical offices, legislative chambers, hospital ethics committees, and polite conversations. I knew that this is where I wanted my book to begin.” And rightly so, because where else would we find the stories of people who are pioneers of the movement other than outside the regulating structures of society? The legitimation of the right to die (I’ll drop the scare quotes now) follows in the wake of people like Betty, individuals pushing against institutions and norms which are throughout the book presented as flat-footed behemoths trampling private rights and heartlessly denying folks their most intimate desires.

But there might be a trick of perspective here. While folks like Betty might see themselves as standing up to the cruel world armed only with a sense of common decency (and Engelhart herself might be sympathetic to that depiction), the truth might be that these people represent the most radical vanguard of what sociologist Robert Bellah and philosopher Charles Taylor call “expressive individualism.” They might not yet have the courts or governing bodies in complete acquiescence, but they are adherents to a purer distillation of the moral logic which animates the age.

Engelhart presents the right to die movement as an uphill battle fought by platoons of individual David’s against out of touch Goliaths. She takes us all the way back to 1983, when twenty-five-year-old Nancy Curzan suffered a car crash in Carthage, Missouri that left her in a persistent vegetative state reliant on life support. A debate ensued between Curzan’s family, who wanted her taken off life support, and the hospital administration who refused. In 1990, after years of Curzan’s “hands and feet [contorting] inward at unholy angles” and her body completely still and unresponsive “save for the occasional eye flutter or seizure or round of vomiting,” the Supreme Court ruled in a 5-4 decision that patients have the right to refuse treatment, even if said refusal would end their life. Health proxies and legitimate representatives have the same right. Fast forward to 1994 and Oregon residents pass Measure 16, making it the first place in the entire world to legalize suicide by popular vote. “After a string of legal challenges and repeal campaigns,” writes Engelhart, “…the law went into effect in 1997. The Oregon Death with Dignity Act became a historic moral turning point for the country and the world: a tilt toward utopia or dystopia, depending your view of things.”

In this solipsistic reasoning, a person suffering from a sense of meaninglessness asserts meaning, as it were, through the choice to kill oneself.

The most flagrant weakness of Engelhart’s book, however, is that these antagonistic perspectives are never really interrogated in any meaningful way. To be sure, The Inevitable is a touching book. Engelhart sketches moving portraits of various characters, such as the bohemian British intellectual Avril who is harangued by confused and somewhat embarrassed local law enforcement weeks before ending her life in a bathtub. Or the eccentric assisted suicide practitioner Dr. Lonny Shavelson, who seems to genuinely have a passion for easing the suffering of his patients on their way out, even going so far as to consider whether the room used in the procedure is “good to die in.” The Inevitable is rendered with a sophisticated intimacy we’ve come to expect from professional reportage of its type. Soaked to the bone with MFA-style narrative techniques, the book moves effortlessly through its often-harrowing subject matter. Dappled and pointillist, it whimsically renders the bric-a-brac of life without judgement or criticism. Which, of course, is the problem.

Ultimately, the book is missing something at its core. Engelhart writes that the people she met “were certainly motivated to die because they were sick, but also because of mental anguish, loneliness, love, shame, long-ago traumas, or a yearning for the approval of Facebook followers.” She also explains that they typically had a few things in common: they were all educated, middle or upper class, and white. “The patients,” she writes, “are more often than not white, over sixty-five and middle class, married or widowed, with some college education. They score low on measures of spirituality.” She also mentions in passing that some observers account for the racial disparity in assisted suicide by claiming that “certain demographic groups take better care of their elders than others, and so presumably have fewer older people wanting to kill themselves.” Taking all of this, along with the fact that so many seeking suicide are merely hopeless rather than suffering acute physical pain or imminent death, and it appears as if they’re suffering from an acute version of what ails our society more generally: a crisis of meaninglessness.

As such, a good book to read along with The Inevitable as a supplement as well as corrective is O. Carter Snead’s What it Means to Be Human. Offering up a general challenge of the anthropological assumptions underpinning contemporary bioethics, particularly as they apply to abortion, assisted reproduction, and suicide. In breaking down the aforementioned “expressive individualism” of our age, Snead writes that “The anthropology of American public bioethics begins with the premise that the fundamental unit of human reality is the individual person, considered as separate and distinct from the manner in which he or she is or is not embedded in a web of social relations. Persons are identified with and defined by the exercise of their will—the capacity for choosing in accordance with their wants and desires.” In the world of assisted suicide, this would translate to a sense that, not only is the morality of the choice to kill oneself entirely justified as an act of individual will, but that the choice itself is de facto moral by virtue of being such an act.

In this solipsistic reasoning, a person suffering from a sense of meaninglessness asserts meaning, as it were, through the choice to kill oneself. Or as Snead puts it, “…the image of the flourishing person that lies beneath the legal mechanisms of [assisted suicide] is the solitary individual seeking to assert his will in the face of mortality and suffering, to make a final existential choice that will express his deeply held views about the meaning and value of his life and how to live it. This is the protagonist of expressive individualism, authoring the last chapter of his self-constructed story.”

In the logic of expressive individualism, can one really “exist” as such without the ability to express one’s individual will? As we see this same logic applied to other domains of bioethics, the answer seems to be no. Engelhart writes about the fear of a “slippery-slope” of justifications for suicide from former Chief Justice Rehnquist and current Justice Gorsuch as the “backbone of opposition thinking” to assisted suicide. “The theory went,” she writes, “that once a limited right to die was granted, it would be impossible to rein it in; the law would inexorably expand and expand to include ever more categories of patients. The sick but not the dying. The mentally but not physically ill. The old. The paralyzed. The weak. The disabled…” But are these fears really so crazy? Already in the Netherlands so-called “psychiatric suicides” are legal for people as young as 12.

But perhaps instead of seeing the current suicide laws as the beginning of the long slope towards government-sanctioned death available for those unable to assert their will to live, we might take Snead’s work into account and instead see this as a process that was already set in motion by the loosening of abortion laws. The law began with the fetus and then expanded to include the elderly, sick, and despondent. Where it ends is suicide as a “human right” to anyone who expresses a strong enough desire for their own annihilation.

Ultimately, The Inevitable is an artifact of the anthropology underwriting our culture’s bioethical “common sense.” And that isn’t necessarily a bad thing. It’s still quite a useful text to think both with and against. The writing is gorgeous and the intimacy which Engelhart is able to strike up with her subjects makes for sympathetic reading. Ultimately, however, its value lies in being a carefully wrought transcription of the meaninglessness and moral incoherence haunting our contemporary world.


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