This is a guest column by Rachel Marie Stone, author of Eat with Joy: Redeeming God’s Gift of Food (InterVarsity Press).
My grandmother wanted to die for a long, long time before her death actually came. When the news from the doctor was unpromising, she was not devastated, but relieved. Having no desire to “battle” cancer—it was in her lungs and all through her spine, having possibly metastasized from her breast—she immediately opted for palliative care. Knowing that her death would come soon was a relief to her. She was not a believing woman: her lifelong position being that if God existed, she was furious at him or her, and her only hope for the afterlife was that she wouldn’t be able to feel the worms eating her. And yet, her despair and seeming contempt for her own life notwithstanding, she faced death bravely. She was chatty with fellow patients and charmed the aides, security guards, and nurses much as she always had done. When the end came, she mumbled incoherently in Yiddish (her first language) and called for her mother. And then she opened her eyes to look at my mother—her only surviving daughter—and to speak her final words:
“You are so good. You are so kind. You are so generous. You are so loving. I love you. I love you.”
“Thank you,” my mother whispered, stunned because her mother had rarely if ever spoken so affectionately. (When, as a child, my mother would say, “I love you, Mommy,” my grandmother would reply, detachedly, “And I you, dear.”) “Thank you. I love you, Mom. I love you.”
And then my grandmother’s heart rate slowed dramatically. Her hands and feet slowly became blue. The young aide on duty was distressed; knowing that these were the signs of the end. He wanted to do something, and called to his superiors, only to be admonished: “She’s DNR! There is nothing we will do!”
For some reason or other my mother had to step out of the room. She did, and returned just before her mother took her final breath. “It was like a miracle. It was a gift to have understood the process of natural death, thanks to the hospice nurses, and simply to be with her as she took that step.” More than ten years later, my mother is still grateful that she was able to be with her mother for what people used to refer to in all seriousness as a “good death.”
The idea of the “good death” has been a part of human culture for a very long time, as two recent books—Rob Moll’s The Art of Dying and Katy Butler’s Knocking on Heaven’s Door—explain. Moll, writing from a distinctly Christian perspective, summarizes the common themes of works on the ars moriendi. Death requires preparation; its process is deeply spiritual, it is work that is to be actively undertaken, and it is a public and instructive event—a community event. Butler notes that the pamphlets on ars moriendi do not portray the deathbed as a place of “helplessness and meaningless suffering but as a mighty, transcendent battleground where angels and demons struggled for control of the soul.” She argues that “one of the purposes of religion” (Butler self-identifies as a Buddhist who does not believe in God) is “to guide the living through the experience of death.”
But these days, whether in the secular world or in the church, one seldom hears talk of a good death. Most deaths—around 80 percent, Moll estimates—take place in a hospital or nursing home. For those of us in developed nations, the days when the family and community took primary responsibility for end-of-life care are long gone, ground ceded to the increasingly intrusive medical system and the funeral industry that’s frequently more interested in offering “life celebrations” than funerals as traditionally understood.
“Once upon a time,” writes Butler, “we knew how to die. We knew how to sit at a death bed.” In her book, which she describes as “part memoir, part medical history, part investigative journalism,” she explores the ethical dilemmas posed by her beloved father’s condition. Jeffrey Butler’s pacemaker had been installed when he was already in his eighties, and it was helping his heart to outlive his brain, severely damaged by multiple strokes. His wife was overwhelmed by caring for him yet could not bear to consign him to institutional care. To the degree that he was able, Jeffrey expressed his regret that his wife was denied a clean break. His pacemaker was keeping him alive longer than God—or nature—meant for him to be kept alive, and he knew it. Having the pacemaker turned off was, in theory, an option, but one fraught with ethical complexity. After her father died, Katy Butler declared that she “would not rest until I understand better why the most advanced medical care on earth, which saved my father’s life at least once when he was a young man [he lost an arm in World War II and was saved from deadly infection by penicillin, which was then still a new and seemingly miraculous discovery] succeeded at the end mainly in prolonging his suffering.”
Though his perspective is very much shaped by the Christian hope of resurrection, Moll suggests that with respect to our use of medicine and attitudes toward death, Christians are perhaps no different from anyone else. We have no more claim to aspirations toward the good death than anyone else, and that’s ironic, because for Christians, death is not the final evil. Have evangelicals become “too pro-life?” he asks, provocatively. Moll treads carefully here, noting that while Christians should embrace the sanctity of life, this “does not require [life’s] preservation at all costs when a lifetime is fulfilled,” and that, as people who believe in the resurrection of the body and life everlasting, we should avoid the “naïve vitalism” that Christians tend unthinkingly to embrace.
But as Moll and Butler make clear, even if one wishes to avoid extreme measures, the path to natural death is seldom smooth. They agree that the pressure to continue treatments that are unlikely to work and painful interventions that preserve life while steadily diminishing its quality comes largely from doctors and not from patients themselves. Both relay the sad truth: that unless advance directives are in place assuring that no extreme measures will be taken (as in the case of my grandmother’s DNR order), most people dying in institutions—who are not already being kept alive by machines—will die after a half hour of CPR. While both Butler and Moll insist on the necessity of advance planning—practical as well as spiritual—in order to achieve the increasingly elusive “good death,” Butler’s book explores more fully the various social and economic factors that have contributed to this elusiveness: as medical technology allows doctors to do more, the guiding ethos has too frequently become “because we can, we should.” That most doctors and hospitals work on a fee-for-service basis often has the unfortunate effect of punishing doctors who choose to act (or not act, as the case may be) conservatively while rewarding those who simply do more. As Butler tells it, choosing a natural death in today’s medical climate is a fight; Moll’s view is much more optimistic.
Perhaps most immediately relevant to those who mourn—which is all of us, from time to time, and more frequently as the years roll on—is the space devoted in each book to grieving. Some years ago I attended a funeral for a Christian friend who had died tragically. When the pastor stepped into the pulpit to exhort us to “be happy for [our friend] because he is with Jesus,” my tears became angry, frustrated. Few of us who had loved him were ready to be “happy” for him, even as many of us were, indeed, grieving in light of the resurrection— grieving as people who still have hope, but who nonetheless regard death as St. Paul himself did: as an evil. Even as they differ on the crucial point of resurrection and hope, Butler and Moll both affirm the necessity of acknowledging that death is horrible, and grieving it fully and well.
As my grandmother was buried according to Jewish tradition, each family member had the chance to dump a shovelful of soil on her plain pine coffin. There are few acts I can think of that so tangibly pronounce death’s finality. Whether I will see her again or not, I do not know for sure. But I am comforted by knowing that she died well, and that we grieved her—and grieve her—well. That is, finally, its own kind of grace.
—Rachel Marie Stone
Copyright © 2014 by the author or Christianity Today/Books & Culture magazine.Click here for reprint information on Books & Culture.
