By Margaret Kim Peterson
“Our people die well.” So John Wesley said of the early Methodists, members of the movement founded by Wesley for Christians who were serious about their faith and sought to live it fully in every aspect of life. In Wesley’s day, as for most of human history, death came early to many (with half of all infants and children dying before the age of five) and swiftly to most (often with only a few days elapsing between the time a person fell ill or suffered an injury and the time that person died).
Under such circumstances, to “die well” meant, above all, to have one’s financial, relational, and spiritual affairs in order at all times. There was, after all, very little that could be done about disease itself. There were no antibiotics, no chemotherapy, no dialysis, no feeding tubes, no pacemakers, no ventilators, no CPR, no decisions to be made about aggressive intervention, pure comfort care, or various intermediate options. The best anyone could do was to be ready to go whenever illness or accident might strike.
That didn’t always happen, of course. People then, as now, didn’t want to die. Even faithful Christians found death too frightening to think about, and thus refused to take steps to see that they died well rather than badly. The result was that they died unprepared, with their affairs in a mess, their relatives unprovided for, their souls not cared for, their burdens of conscience not dealt with. It required courage to do otherwise: to make a will, to repair relationships, to receive communion frequently, and thus to be ready at any time to die calmly, rather than in a panic.
However frequently the calmly prepared “good death” of the early Methodists and other Christians of a former day may or may not have occurred, it is worth noticing how different their situation was from both the reality and the ideals of our own day and culture. Early and sudden deaths are no longer common. In fact, they are extremely rare, as medical science has found means of prevention or cure for acute illnesses (like infections and childhood diseases) and causes of death have shifted to chronic ailments associated with aging (like cardiovascular disease, cancers, and organ failure).
There are also now a multitude of decisions to be made along the pathway of illness. Should an early-stage malignancy detected by screening be treated with radiation, surgery, chemotherapy, watchful waiting, or some combination of the above? Will an elderly person with chronic kidney disease do better with or without dialysis? Should a person whose health has failed to the point that he or she can no longer swallow have a feeding tube inserted, or will this only lead to aspiration pneumonia? Under what circumstances should a person be placed on life support or removed from it?
And patient resignation is definitely out of fashion. Our idealized response to illness is active, even violent. Richard Nixon declared “war on cancer” in 1971, and the warfare metaphor has since then been extended to other contexts: infants with congenital heart disease, for example, are referred to collectively as “heart warriors.” We don’t relieve pain; we kill it—with drugs we call “painkillers.” Friends and family members say admiringly of an adult, a child, even a baby who is sick, “She’s a fighter!” When someone dies, his obituary notes regretfully that he “lost his battle.”
Our idealized response to illness is active, even violent.
It is worth noticing, however, that even with all these advancements and options and metaphors of power, the death rate remains at 100 percent. And so it is fair to ask: are Christians of today dying well? Is that still a desirable goal? If it is, what might it look like? How might the good death of today be similar to or different from the good death of an earlier age, an age before the transformations and challenges created by modern medical science? And what specific steps can individuals, families, and communities take that might help each of us die well rather than badly?
The conversation about what constitutes a good death, and what might allow more people to have such a death, is one that is already taking place with some urgency among physicians and others who care for the sick and the dying. Much of modern medical science, it turns out, is far better at offering hospitalization and drugs and procedures to people who, it is assumed, can be restored to health if only they are treated aggressively enough, than it is at caring gently and respectfully for people who by any realistic estimate are in the waning phase of life.
Intensive care medicine, for example, developed beginning in the 1950s as a way of offering a heightened level of medical intervention to persons who were acutely ill with infections or other conditions that were now treatable with newly developed antibiotics and other drugs, or persons who were recovering from the more complex surgical procedures that were then becoming possible. The point of intensive care was to do everything possible to keep patients alive, on the assumption that eventually they would get well and go home.
As long as most people admitted to intensive care were relatively young and resilient, and most people who were obviously nearing the end of their natural lives (like the frail elderly) were cared for at home, as they still were in the fifties, the intensive care unit (ICU) seemed to work miracles. Today, however, the ICU has become the default destination for people who cannot be kept alive in any other setting, and lots of people die there. In the United States as a whole, about one in five deaths takes place in intensive care. In some localities, that proportion is three in five.
If people wanted to die in intensive care while undergoing unlimited medical procedures meant to keep them alive as long as possible no matter what, these numbers would be purely a problem of economics and logistics. But when people are asked about their wishes for the end of life, very few express a desire to die in intensive care, bristling with tubes and wires, their chests bearing the bruises and marks of a failed resuscitation attempt, leaving behind families and friends traumatized by the images of their loved one’s death.
The vast majority of persons, when asked, say they want something very different. They want to be at home, in the company of people they know and are known by. They want access to hospice and palliative care. They want to have their dignity respected and their pain controlled. They want to cherish the time they have left and devote it to people and to experiences that are meaningful to them. They want to conclude their lives and relationships in a way that makes sense, given how they have lived.
Why is there such a disconnect between how people say they want to die, and how in fact in many cases they do die? One likely reason is the same as existed in an earlier age: people don’t like to think about death, so they don’t plan for it. As a result, they get the default option. Before the development of modern medicine, the default was a sudden death that happened fast, with no time to make preparations that had been hitherto neglected.
Why is there such a disconnect between how people say they want to die, and how in fact in many cases they do die?
In our own day, the default is a death that is a long time coming and happens slowly, with an infinite number of hardly-recognized escalations of medical intervention, until finally an elderly person with multiple chronic ailments—or a younger person with a life-limiting condition—is in intensive care, intubated, unconscious, unable to speak for him- or herself, while family members agonize about what to do next.
Deaths like today’s default option happen for a lot of interlocking reasons, among which are at least these three. First, we do not talk early and repeatedly with our loved ones and our doctors about how we hope to live and to be cared for as we near the end of our lives. Second, we identify medical treatment with life itself, imagining that “the doctor” has always got another fix, another treatment, another drug or procedure, that will kick the can of our mortality down the road a little further, so that the time to plan for and to live out the end will never come.
Third, and perhaps most fundamentally, our commitment to violent metaphors for illness and treatment leads us to frame life as a battle that everyone is destined to lose. When we do this, we simultaneously define death as the failure of medicine. Successful medical treatment, then, becomes medical treatment that gets more and more aggressive, the sicker the patient becomes. Any move to prioritize comfort over cure is seen as defeatist, and patients and doctors alike are shamed or coerced into accepting or imposing burdensome interventions that increase suffering but preserve everyone’s fantasies of heroism.
It takes intentionality and nerve to chart a different course. I speak from experience, as the wife and primary caregiver of a husband, now confined to bed, who was a wheelchair user for many years after an illness at age eighteen rendered him paraplegic. All that sitting down eventually took its toll, in the form of typical complications of paraplegia: pressure ulcers, difficulty with wound healing, infections. Along with these came the typical medical interventions: antibiotics, special wound therapies, surgeries, months of hospitalization followed by months of rehab.
We hoped that all this would return him to health. It didn’t. Finally things got so bad that the medical recommendation was for a series of surgeries that would have put him in the hospital for yet more months. By this time his condition was so fragile that it was obvious (to us, at least) that this could only result in his death in the hospital, preceded by a shorter or longer period of utter misery.
“Absolutely not,” we said. “If he’s going to die, we can do that better at home.” He declined the surgery, and we called hospice instead.
That was three years ago. We still remember the caller who was so uninhibited as to say what others were no doubt thinking: “Sorry to hear you’ve thrown in the towel.” No, Dwight did not “throw in the towel.” He took in the sad reality that his failing health was beyond the capacity of medicine to restore, and chose to live the rest of his life at home with his family, enjoying good food, uninterrupted sleep, visits from friends, and regular calls from the pastoral staff of our church.
He took in the sad reality that his failing health was beyond the capacity of medicine to restore, and chose to live the rest of his life at home with his family, enjoying good food, uninterrupted sleep, visits from friends, and regular calls from the pastoral staff of our church.
We thought he’d be gone in a matter of weeks or months. We’re happy to have been wrong. In fact, as we now know, palliative care—medical care intended to help patients feel better by lessening symptoms of illness or side effects of treatment—often has the effect of lengthening life. (It’s remarkable how much better people do when they’re comfortable.) But the choice of hospice, for Dwight, was never really about how long we thought he had left. It was a choice about how to spend the time he had. It was not a choice for death; it was a choice for life.
“Whether we live or die, we are the Lord’s,” Saint Paul wrote to the church at Rome. Do we believe this? If we do, it ought to be possible to talk with one another about how we want to live when we are dying. It ought to be possible to resist the temptation to make an idol of medicine, and instead to recognize it as a useful tool, sometimes for cure, always for care. It ought to be possible to lay down our arms and make peace with our mortality. It ought to be possible to die well.