The Good Death: An Exploration of Dying in America, by Ann Neumann (Boston: Beacon Press, 2016, ISBN 978-080708062-7). 240 pp. Hardcover, $26.95; softcover, $18.00.
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” wrote Susan Sontag in Illness as Metaphor. There are, of course, ways of avoiding that eventually terminal second kingdom, and had I my druthers, I, like Montaigne, would want death “to find me planting my cabbages.” I want not to know what hit me because the alternative—the indeterminate number of days spent drugged or in pain, the humiliation of bedpans and sponge baths, the emotional and financial toll on one’s family—seems intolerable. Ann Neumann’s The Good Death: An Exploration of Dying in America has not changed my mind.
Although a visiting scholar at the Center for Religion and Media at New York University, Neumann is uninterested in religion as an aid to finding a good death; indeed, religion is seen mostly as a hindrance to successful dying. Nor, unlike Ernest Becker (The Denial of Death), is she interested in how the prospect of our demise makes closet neurotics of us all as we seek “to be free of the anxiety of death and annihilation.” Rather, Neumann’s concerns are politically, medically, and ethically practical: What stands in the way of authorizing terminal individuals to make legal, informed choices regarding the sort of death they want when they want it?
To answer the question of what worsens the experience of dying in America, Neumann explores, as she has done for years, a complex of related issues, drawing on extensive research that includes numerous interviews, conference attendances, her personal experiences as a hospice volunteer, and the stories of dying persons and their families whom she came to know intimately. She judiciously considers, among other concerns, the history and practice of hospice care (at home, in hospitals, in prisons); medical overtreatment and its connection to technological advances; doctor-assisted suicide (“aid in dying”); terminal fasting and forced feeding; the political power of social conservatives, evangelicals, and the Catholic Church; America’s health-care crisis; the concerns of the disabled regarding the perceived slippery slope of aid in dying; and the niceties of informed consent, “do not resuscitate” orders, medical proxies, and the like. The reader is introduced to the work of various organizations, scholars, and activist groups, and the book concludes with reflections on hope, mourning, and mortality.
Neumann’s thesis is clear: “(w)e wrongly believe that we have the freedom to do what we want with our bodies, that our medical choices are our own,” but “(f)or various reasons and in countless ways, the decisions we make . . . are qualified by forces often seemingly outside our control.” These forces include “medicine’s inclination to treat, not care, for patients,” an “inclination” that has “taken on a try everything fervor.” The result is the “torture” of dying patients and the squandering of resources needed by others. Thanks to medical advancements, Neumann argues, even our understanding of death has changed. “No longer (is) it a natural process that proceeded after a fatal trauma, illness, or elderly decline” but something that can be deferred for at least a while if one is willing to pay “the emotional and physical price.”
Furthermore, “(h)owever secular we think our society, religion continues to be most overt at the deathbed” with powerful individuals and special-interest groups insisting they “[know] what’s best for all of us” and wielding sufficient clout to get their views legislated, “conflating,” as Neumann writes of evangelicals, “their own version of moral behavior with public health policy, law, and government obligation. . . .” That “version of moral behavior” often takes the low road, as when a man confined to a wheelchair is stopped while buying groceries and told, “God struck you down because you have evil in your heart”—an instance, Neumann caustically concludes, of “Evangelical overachievement.” However, when it comes to shaping public opinion and law, no one interferes like the Catholic Church. Neumann informs us, for instance, that “there are [only] two places in the United States where persons can be force-fed, where their autonomy is suspended”: prisons and the 629 Catholic hospitals in this country. She relates, as a second example, that Maryland’s aid-in-dying bill, supported by 60 percent of the state’s residents, was quashed by Catholic governor Larry Hogan. In sum:
The hard power of the [Catholic] church, which retains its ability to decide the types of care millions of patients receive daily—even to decide what medical options patients can be informed of—has combined with the soft power of public influence and coercion. These deliberate efforts work in conjunction with our collective fear of talking about death, with our lack of knowledge about how it comes, and with our institutionalization of the dying. Independent choice is always limited, withheld from some along the lines of race or class or religion. But the role that the Catholic Church and its allies play in how health care is delivered and legislated further limits everyone’s claim to choice.
The prospect of dying doubtless “concentrates [the] mind wonderfully,” as Samuel Johnson observed long ago, but first we must overcome our cultural reluctance to talk about it if we are to overcome the forces that block our ability to die as we would wish. We have a culture, to judge by our popular media and nightly news, enthralled by death unless it is yours or mine, yet such reticence will not help us decide such issues as the rightness of removing life support in the case of brain death, nor it will help us reject those fond hopes that “we can cure aging itself” as we research our way toward immortality.
The sad truth, at least for now, as Tad Friend recounts in a recent article for the New Yorker (“The God Pill: Silicon Valley’s Quest for Eternal Life,” April 3, 2017), is that from age thirty on, “our risk of mortality doubles every seven years.” For Neumann, hopes of forestalling the inevitable—whether by avidly following the work of longevity scientists or sweating out an elliptical hour at Planet Fitness—may prevent us from thinking seriously about our mortality or “from living now”: “we allow hope for more years to direct our decisions, we put off attending to regrets, we forget that all life is like a carton of milk: it comes with an expiration date.” We must, Neumann continues, “[turn] away from life everlasting.” To do so is “moral because it reduces the stigma of death to its natural place”:
Accepting that we all will die increases the chance that we—and our culture—will better value those who are dying. It gives us the chance to improve care for the elderly, the sick, the disabled. And it gives us the opportunity to plan for our own deaths. The body is a strange thing; it doesn’t always obey our well-laid plans. Doctors can only do so much. But putting aside our futile quest for longer and longer life-spans helps us to live in the real world. That is the world of tragedy and disease, the world of seasons, a world where we honor the dying by caring for them, then interweaving their names and memories into our finite lives.
Near the close of her book, Neumann assures us that &ld
quo;there is really one kind of bad death, characterized by the same facts: pain, denial, prolongation, loneliness.” It is hard to disagree, and I still hope to drop like a stone, cabbages in hand. If “to die is different from what any one supposed, and luckier,” as Walt Whitman believed, the luck for now resides in escaping the loss of agency, the ventilators and feeding tubes, the pain and denial. Perhaps that’s as lucky as we will ever get, for Neumann admits that she has learned there “is no good death. . . . It always hurts, both the dying and the left behind. But there is a good enough death. It is possible to look it in the face, to know it will come, to accept its inevitability. Knowing death makes facing it bearable.” I suppose, though I still find in such knowledge of death as I possess equal parts empowerment, despondency, and existential dread. At least, as secular humanists, we can take some comfort from another poet, Dylan Thomas, who promises that “After the first death, there is no other.”