Talking about death hasn’t felt less taboo since the death-obsessed Victorian age. In recent years, we’ve seen a surge in arty mortality salons. A brilliant Goth-chick mortician made an unlikely splash with Web videos discussing things like liquid cremation and caskets that explode from bodily gasses. There’s a growing alt-death movement that’s deeply interested in corpse talk, i.e. how long we should wait to bury the dead, what dead bodies look like, where we should put them. (Human composting?!) Our increasing willingness to talk about death in recent years could be considered progress—but it’s also something of a posture, which makes it easy to forget that we’re often broaching the subject of mortality in the most superficial of ways.
Specifically, there’s one kind of death talk that’s still much less accessible: end-of-life care. This topic is complicated and emotionally grueling and won’t succumb to metaphor. It’s also where the most compelling philosophical and moral questions about mortality reside. Our interactions with the not-quite-dead is where our institutional and cultural limitations are revealed most clearly: for instance, the mixed blessing of medical advancements that can keep the virtually dead breathing, and our systemic bias toward doing something, however futile and debilitating. In her new book, The Good Death, Ann Neumann writes of visiting a hospice patient hooked to a ventilator while his wife, still hoping for a recovery, frets that he can’t eat. Denial is a fog, obscuring what’s right in front of us. Neumann’s is the latest in a series of books on the American way of dying—how it should go and how it does go, which are not usually the same thing.
Neumann, a journalist, begins her book lamenting her father’s death, as well as its location: in a hospice facility instead of at home, despite his wishes and her best efforts. Her grief and regret eventually prompt her to study how Americans deal with the end of life and how it could be better, exploring the religious, legal, and medical institutions that influence and restrict us. At the heart of her book is the difficult question of what makes for a “good” death. Neumann says this is particular to the individual, but at the very least, a good death is characterized by acceptance rather than denial, with a minimum of pain and suffering. To that end, she writes sympathetically about assisted suicide, suggesting that, as an antidote to the prevailing exhortation that the fatally ill “not go gentle into that good night,” we “calculate pain and suffering into the costs of futile care.”
Over and over, Neumann hammers home the barriers that prevent dying people from getting what they want. She explores the cultural divide over the fate of Terri Schiavo, kept artificially alive for so long while in a persistent vegetative state. She points out the importance of advanced planning, but warns about the possible curtailing of your options—legal documents be damned—should you be carted from a catastrophic accident to a Catholic hospital. And she recounts the story of an ailing elderly couple booted from their assisted-living home because they were exercising their legal right to cease eating and drinking. (Disclosure: I once interviewed Neumann, a visiting scholar at New York University’s Center for Religion and Media, about end-of-life care.)
Neumann also writes about becoming a hospice volunteer, and I found the stories about her patients to be the most fascinating and, pardon me, the most alive parts of the book. One patient, whom she visits almost daily, just wants to hold her hand and watch Judge Mathis; another flirts with her as she holds up his frail body. She writes that her patients’ daily suffering, the incremental losses of functions and dignity, clash with a fantasy she’s long held of the perfect exit—something sudden and noble, “a romance where our loved one gives us one last meaningful look.” Of course, that fantasy is not just Neumann’s. It’s deeply embedded in our culture, and to understand why, it helps to consider the title of her book.
The notion of the “good death” dates back at least to the 19th century, when people believed one should die at home, surrounded by family, to make sure the one’s soul was all right and heaven-bound. It was an idealization of a much harsher reality, and there was a kind of script the dying and the family were supposed to follow, filled with proclamations of religious belief. In recent years, a variation on this concept of a spiritually satisfying Good Death has been revived by an assortment of death-positive activists who rightly see this country’s pervasive denial of mortality as a factor in many drawn-out, over-medicalized deaths. Some argue that keeping the dying at home, and caring for their bodies after death, can offer transcendent closure. When I was interviewing people involved in the growing home funeral movement, they talked of the restful beauty of their loved ones’ corpses, of sensing souls depart while they kept vigil over the bodies for days. The instinct to make something beautiful out of grief strikes me as admirable and heartbreaking and very, very human. And we can try for it. But in life we don’t always get what we want. So why should death be any different?
Sometimes, despite our best efforts, our loved ones die in the hospital, and sometimes, we don’t know it’s coming even though we should. Frank end-of-life conversations with doctors would make such surprise endings less common, but there’s also human nature to contend with. When the odds are slim, hope makes would-be statistical outliers out of all of us. Hospital deaths often resemble a flight of steps: a series of tumbles interspersed with plateaus, a true trajectory we can see only in hindsight.
At the very least, if you have to take the big trip, having Neumann by your side wouldn’t be a bad way to go. She’s the kind of empathetic, dedicated, above-and-beyond hospice volunteer you’d imagine from a movie. She buys strings for one patient’s broken and beloved cuatro, and helps a dying AIDS patient articulate his pain so he can start on Methadone. (“Highly addictive,” the nurse says. “He’s dying,” Neumann replies.) She lingers on her four-year friendship with one patient in particular, a doctor named Evelyn, for whom she procures discontinued Twinkies and high-quality pot. Evelyn is wealthy enough to afford to be at home, with nearly 24/7 care, surrounded by loved ones, but still, terms her days increasingly “crummy.” Neumann decides Evelyn’s is a “good enough death,” which is the best that we can do.
The Good Death: An Exploration of Dying in America by Ann Neumann. Beacon Press.
See all the pieces in the Slate Book Review.