What is a Good Death?

The Inevitable: Dispatches on the Right to Die BY Katie Engelhart. New York: St. Martin's Press. 352 pages. $28.
Katie Engelhart. Photo: Owain Rich

Mainstream debates over assisted suicide, or the “right to die,” are predictable. The so-called “sanctity of life” is pitched against “personal autonomy,” while murkier questions of context, political power, and personhood remain uninterrogated. Journalist Katie Engelhart’s The Inevitable does more than perhaps any book to date to advance and complicate the issue. The intensively reported text offers intimate portraits of people seeking and fighting to expand the “right to die,” each of whom seems to edge closer and closer to what we might call “imit cases”: individuals whose desires for physician-assisted deaths are fraught with both psychic and ethical ambivalence. Engelhart takes the reader beyond a staid debate into a terrain of reflection and struggle over what it means to be a sovereign self.

NATASHA LENNARD: Tell me a little bit about your history reporting on the subject and how the book developed from that.

KATIE ENGELHART: I was working as a reporter in London in 2015 and I was asked to cover a parliamentary vote on whether to legalize physician-assisted death. The national debate at the time was both vehement and predictable.

It was in the process of covering that story that I found a much more interesting one. I learned about networks of people who were quietly making plans to end their lives, far away from doctor's offices and hospital ethics committees. Sometimes, they had help from clandestine groups, which activists refer to as part of the “euthanasia underground.” I’m loath to draw any comparisons between abortion and the right to die, but one point is relevant here: we know that in the years before Roe v. Wade, there were underground groups offering safe abortion access. The same sort of groups exists around assisted death. Within a few weeks of the start of my reporting, I had met several people in their eighties who had managed, with help from online forums, to set up encrypted email addresses and order lethal barbiturates from drug dealers in Mexico and China. These people weren’t dying of anything in particular—but rather what we euphemistically call “old age.” They didn’t want to die in a drawn-out way.

And so I spent the next five years collecting stories from the US, Canada, Australia, and several European countries. In a few cases, I spent years interviewing subjects on and off. I followed five patients, four of whom died with assistance. I watched one of those deaths.

Alongside this reporting, I read a lot on the philosophy of aging and dying. And I started to question some of my very fundamental assumptions, like the idea that “assisted death” should be a medical process, with medically based eligibility criteria. One activist—a doctor who lost his medical license for running “DIY Death” seminars—said something that really haunted me: “Life is a gift. And gifts can be thrown away. If it can’t be thrown away, it’s not a gift but a burden.”

There's something almost Socratic in your method: we think we can apply certain precepts supporting the right to die comfortably, and then are destabilized when faced with a more complicated or recalcitrant case. Is that process reflective of your journey reporting on this issue? Perhaps you can say a little about what went behind the book's organization, ordering, and trajectory?

At the beginning, I cast a wide net when it came to recruiting subjects. I followed a lot of people. I knew that many of their journeys would be slow and twisted—and that some would choose, along the way, to stop participating in my project. It took a few years for all the stories to structure themselves in my mind, but then it all seemed obvious. I knew that I wanted my readers to feel increasingly off-kilter and uncertain as the book progressed. I wanted them to be less certain about things at the end than at the start. To that end, I started the book with a very clear-cut case: an eighty-nine-year-old man with extremely advanced prostate cancer who died with the help of a physician in California. I watched him die over the course of several hours. His three grown children were all with him when his heart stopped beating. I think that most readers found this man’s death to be “rational.” Or at least emotionally legible.

Later stories are messier—and I tried to let all the mess come through. These deaths took place outside the medical system and the law. I wrote about a woman named Debra who took her life because she had early-stage dementia and did not want to lose herself to the disease. Certainly, the dementia was driving her decision. But so were other things: money (her lack of it), housing precarity, aloneness, her fear of ending up in a shitty, Medicaid-subsidized nursing-home bed.

When we read about assisted dying in the news, the stories are terribly sanitized. We hear tidy narratives about awfully sick people in Oregon or California who, after receiving their terminal diagnoses, make difficult but lucid choices—in direct and exclusive repose to this tumor or that lung disease, etc. The stories feel dishonest. A decision to die early is rarely so tidy.

I spent years following Adam Maier-Clayton. His story was reported by many news outlets in a straightforward way: he was suffering from psychosomatic pain due to mental illness, the pain was incurable, and so he was requesting a physician’s help to die. The implied thesis was always that Adam deserved his death, because his suffering was so great. When I spent time with Adam and his family, I saw that suffering firsthand. But I learned other things too. About Adam’s yearning to be famous on Facebook. About the time he was told that he would have to wait months to get a subsidized appointment with a psychiatrist. Later on in the process, I cut off direct contact with Adam. I worried too much about the influence I was having on his trajectory—just from listening to him speak, and taking notes, and telling him that I was going to write about him.

As the book progressed, I tried to think more critically about legal physician-assisted death. In the states where “medical aid-in-dying” is legal, there are strict eligibility criteria, typically imposed by state legislators. Doctors (usually two, but sometimes three) decide whether a patient meets the legal criteria and is thus deserving of a swift death. But this process is imperfect. The eligibility criteria privilege certain kinds of suffering over others. In the US, for instance, terminal cancer is qualifying, but not a degenerative disease that might take a person’s life, painfully, over many years. The assisted dying process puts doctors in charge, as privileged gatekeepers—even though people often seek out assisted death for reasons that are more existential than medical (e.g., fear of losing autonomy and dignity). How do we decide whether someone who wants to die is “rational” and whether their reasons are “rational”? And why should they have to be rational anyway?

Your role as author and voice in the book is fascinating. You openly grapple with the ethical dilemmas of your presence in the characters' lives. (I wish journalists did this more generally!) Can you say a little about how you navigated this? Why did it feel important to include yourself as a narrator in the ways that you did?

I was unnerved for five years—so uncertain, always, about whether what I was doing was ethically correct and decent. In a few cases, I knew that people had the intention to kill themselves before they carried out the act—alone at home, without the help or knowledge of doctors—and I did not intervene. Sometimes I knew precisely when the deaths would take place. And where and with whom and using what instrument or poison. I talked to lawyers along the way, but they didn’t always have clear answers. I studied the law myself, looking at differences in how states define “assistance” in and “accessory” to suicide. Every reporter knows that the story changes as soon as she appears with her notebook, no matter how carefully she navigates the scene. I did not want anyone to die for the sake of a story—for my story—because they felt obliged to give me an ending. I spent years following a young woman with multiple sclerosis in Colorado. Once, her father told me very directly that his daughter “should not feel that she has to die to give you a story. There could be a quiet, implicit pressure.” I agreed that there could be. I said I hoped that there wasn’t.

I felt that my readers needed to understand how I was reporting these stories, because the process was so unusual. They also needed to understand the rules I created for myself, in the absence of any existing legal or ethical guidelines. I was selective about whom I met with. When possible, I spoke with family members, friends, doctors, therapists, caregivers. This way, I wasn’t operating in the shadows of someone’s life. I was also giving people the opportunity to warn me away, if they thought I was causing harm. I reminded subjects over and over that I expected nothing of them. That I was not invested in any particular conclusion. That they could stop answering my calls whenever they wanted to.

I didn’t anticipate all of the challenges. For instance, I spent several months with a woman who had dementia, in the lead-up to her suicide. She told me all the time about how her brain was falling apart. How she was forgetting herself. Losing memories to “brain farts.” It occurred to me early on that to feel OK about following her story, I would have to get consent from her along the way. I hated the idea that Debra, as she existed early on in the disease, might consent to be interviewed by me but that later, she might not fully understand or like what she had agreed to. Or that she might feel trapped in a decision made by a version of herself that no longer fully existed. I’m not a medical provider; I’m not able to assess mental “capacity” from a medical or legal perspective. But I did do my best to talk about the reporting process with Debra along the way. I repeated things over and over, if and when she forgot them.

Throughout the book you draw our attention to the idea of death with "dignity"—a key word in the right-to-die lexicon. Why do you think the idea of "dignity" plays the role it does in this discourse? What problems have you observed in the way "dignity" can get conceived?

I think dignity is a word that can sometimes hold back honest conversation on this subject. Certainly some proponents of legal, “medical aid-in-dying” have seized the word—and absorbed it into their catchphrase euphemism, “death with dignity.” On the other side, the 2008 Republican Party platform had a section opposing assisted death titled “Maintaining the Sanctity and Dignity of Human Life.”

And you hit on another point, which is that some find any discussion of dignity to be inappropriate in this particular instance. After all, aren’t all humans endowed with an intrinsic dignity—and so aren’t we all, by extension, dignified when we die? If there is “death with dignity,” doesn’t that imply that there is death without dignity? If so, does that indignity lie in the nature of the death itself (an ugly, slow, painful death by cancer, for instance) or in someone’s attitude in the face of dying? For some, dignity is not found in escaping physical pain, through hastened death, but rather in being calm and courageous and self-restrained in the face of this. Dignity, in this view, is reflected in composure. It is earned through endurance.

Beyond anything political, many philosophers dismiss “dignity” as a muddy sentiment. Some argue that it is, at best, conceptually redundant—another way of saying “autonomy” or “respect for choice.” I write in the book that when I started interviewing sick and dying people, I made the mistake of expecting too much from them: specifically, expecting some kind of transcendent wisdom from them, as if by virtue of being especially intimate with mortality, they would understand things like dignity in a way that I couldn’t. I cringe at that expectation now. What I learned, over many years, is that many sick people equate dignity exactly with sphincter control. As in: their lives would be dignified until the moment when they shit their pants or had to have someone else wipe their ass. Even when people are fuzzy on defining dignity, they know when something feels undignified to them.

This raises a point that many disability-rights advocates have been making for years. They argue that in reorienting the law to help people avoid indignity, we risk implicitly (or maybe explicitly) suggesting that people who need assistance with, say, toileting, are living undignified lives. That’s a very dangerous mindset to adopt. Some advocates call this a “better dead than disabled” mindset. I’m very sympathetic to those concerns, of course. In the US context, disability would not qualify someone for a physician assisted death—and I have not seen any evidence of Americans with disabilities being pushed to end their lives early, with a doctor’s help.

In the end, I came to the conclusion that when people choose physician-assisted death—which entails really scripting their final days and months—they often pursuing “dignity” in the form of narrative coherence. People find dignity in authenticity. It matters to them that they die as themselves, even if it means sacrificing weeks or months of life. It matters how their lives wrap up. I write that for some patients, an assisted death can be a kind of authorial act, letting a person play herself out, until the end.

I'm interested in how questions around an individual's ability to take their own life with medical assistance are so burdened with something like a Kantian categorical imperative. (One person's feeling of personal indignity gets read, for example, as a judgement on what is per se dignified in life.) The medical and legal establishment inevitably works on the logic that if one person with a given reason for wanting death is granted that wish, then the same has to apply across the board. But of course the individuals who desire to end their lives with medical assistance are not in turn suggesting that everyone in their position would or should make the same choice. Yet, as ever, personal choice never exists in a vacuum. What, in your view, are some of the most difficult ways you observed individuals' desires and senses of self come into conflict with medical, legal, and even moral, regimes, when it comes to assisted suicide?

Right. Personal autonomy never exists in a vacuum. And certainly, some people think that if we green light assisted death for a certain kind of patient—if we effectively decide, at the state level, on reasonable or justifiable criteria for desiring death—we will create a moral ecosystem that ends up harming other patients. One disability-rights advocate I interviewed believes that assisted-dying laws codify the “better dead than disabled” mindset—and that, in turn, they pose an implicit challenge to people with disabilities. As in: Why are you still here? Still burdening us by living? By your needs? The advocate believes that if assisted death becomes more common, what is now a choice to die will be transformed into an obligation: if not through the force of law than by the coercive powers of medical expectation and resource scarcity and social disdain. Or at least that staying alive, at great personal and communal cost, will come to be seen as a kind of vanity. We will create what philosopher Paul Menzel describes as a “duty to die cheaply.” For the greater good, for the children, etc.

I spent years interviewing a woman named Maia who has multiple sclerosis. And she told me that when she started thinking about ending her life, she had to really ask herself: Am I a self-hating person with a disability? In the end, she decided that this wasn’t the case. She plans to die at an assisted death clinic in Switzerland, since she is not eligible to die under US laws. (She is not within six months of a natural death. Her disease will likely take her life slowly over many years/decades.)

Kant championed autonomy—but he also told us not to kill ourselves. In part because that would be using autonomy to put autonomy to an end. I do think that proponents of assisted death often ignore the larger context that influences a person’s decision making. They present assisted deaths as the results of moral choices. But can that be? In America, of all places? I have done a lot of reporting on the for-profit nursing home industry, for instance. I understand the way that our eldercare system pushes older Americans to fend for themselves until they have some sort of avoidable medical disaster (a broken hip is common) and then move into a nursing home, and then spend down their life savings, and then qualify for Medicaid and live out their years in a state-subsidized nursing bed, receiving far less than the 4.1 hours of human contact and care that experts agree is essential for baseline older adult health. How could we say that a person in that position who wants assisted death is making a straightforward moral choice? Wouldn’t such a person already understand, at a basic level, that we don’t value her life very much at all?

In your final chapter you cite a Belgian oncologist who supports euthanasia—and laws around it are considerably liberal in his home country—but tells you that expanding euthanasia in the US would be morally unacceptable. "You shouldn't try to implement a law of euthanasia in countries where there is no basic healthcare," he said. In such a circumstance, the availability of euthanasia could stand as grounds to further abdicate duty to relieve the immense suffering that the US system produces. Aside from one of your characters, a somewhat notorious pro-euthanasia doctor who is an absolutist about peaceful death as a "right," most experts and thinkers on the issue do reckon with the societal duties and obligations there should be around enabling good lives in order to make ethical the offer of a "good death." Yet, you also note the idealism in this thinking—after all, why should actually living and suffering people in the now be denied a peaceful, chosen death, because our current system is not yet ethical enough to justify it? These fraught and crucial questions animate the text. How valid do you think it is to worry about expanded euthanasia in a country that subjects so many people, in deeply unequal ways, to devastation and suffering?

Right. When I travelled to Belgium, I met an oncologist named Dr. Wim Distelmans who is literally famous in the country because he is so outspoken in favor of euthanasia. He has performed many, many assisted deaths. I asked him what he thought about American right-to-die legislation and he physically recoiled. He said: “It’s a developing country. You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” The United States is the only country in the world that gives patients a “right to die” but not a “right to healthcare.” I think this is totally grotesque.

American doctors—many of whom oppose assisted death or are at least strangely disinterested in it—tell me a different version of the same story. They say that we should not worry so much about “good deaths.” This is either because they believe that there are no good deaths, or because the quality of our deaths is largely out of our hands, or because our quixotic preoccupation with engineering the perfect final hour is a disproportionate use of our efforts, which would be better spending on improving life.

Maybe this is an enormous moral cop-out—my biggest, in this book—but I ask: How can we make people suffer now? There are patients who know what they want. Who are we to say: “No, we think your reasoning is unfortunately tainted by larger economic/medical forces, and so we will deny you the death that you want?” When we deny these people what they judge to be in their best interests, we are effectively asking them to suffer for the sake of—what? Some far-off social-welfare revolution? Some wild dream that if millions of people suffer just like them, and people find out about it, the political system will correct itself accordingly, or implode, or be burned down by the exasperated masses? That seems like a lot to ask.

Natasha Lennard is a columnist for The Intercept and her work has appeared in The Nation, Esquire and the New York Times, among other outlets. She teaches critical journalism at the New School and is the author of Being Numerous: Essays on Non-Fascist Life.