The Troubled Dream of Life

In Search of a Peaceful Death

Daniel Callahan

• Publisher: Georgetown University Press
• Year: 2000
• Print ISBN: 9780878408153
• eBook ISBN: 9781589014718
• Topic: Medicine
• Subtopic: Ethics in Medicine

Drawing on his own experience, and on literature, philosophy, and medicine, Daniel Callahan offers great insight into how to deal with the rewards of modern medicine without upsetting our perception of death. He examines how we view death and the care of the critically ill or dying, and he suggests ways of understanding death that can lead to a peaceful acceptance. Callahan's thoughtful perspective notably enhances the legal and moral discussions about end-of-life issues.

Originally published in 1993 by Simon and Schuster.

Chapter 1
THE FIRST ILLUSION: MASTERING OUR MEDICAL CHOICES

Sometimes we are lost and know it. The signposts are unfamiliar and point to places unknown. We realize we must stop and find a new way. At other times, we seem to be following the approved map and yet make little progress. Our doubts and hesitations grow. Where are we going? Just this kind of uncertainty is now appropriate for the unending human effort to understand and pacify death. We have as a culture badly lost our way in that effort, but the air is so full of reform plans, so rich with court decisions and regulatory schemes, that it is easy to be misled. We seem to be doing everything right, working to change those laws and medical practices thought to stand in the way of a tolerable death.

Yet there is, barely below the surface, a remarkable and rising degree of anxiety about dying—not necessarily death as such, but the combination of an extended critical illness gradually transformed into an extended dying.¹ That anxiety is in great part based upon the growing difficulty in making a clear determination that a patient is dying, and that nothing more of life-extending benefit can be done. It is exacerbated by a widespread fear that modern medical death can strip a person of choice and dignity. The anxiety is surprisingly unallayed by the rhetorical potency of the confident slogans that fill the air, “death with dignity” at the top of the list. It is as if, despite that talk, we all understand well enough in some attic of our mind that the kind of illness and dying we are likely to face with modern medicine may refuse to be nicely managed and regulated. We are also half aware that we live in a society increasingly scant in those cultural resources necessary to sustain our interior life as we struggle to make sense of our endings. Reform, yes. Consolation and reassurance, not necessarily, and perhaps not at all.

Where are we? In part we are in an ancient and familiar place, one that leads us to ask that oldest of all questions: how are we, in the secrecy and depth of our own lives, to make sense of our decline and death? Three great struggles of the self with mortality await each of us. There is the struggle to deal with the threat of illness and accident, and sooner or later its reality. That threat reminds me that my body is always at risk of sickness or disability, that things can and will go wrong. I also recognize that, as a self, I will age, that in those spots and wrinkles and aches—in that changing face in the mirror—I have already aged, and that I am destined to become, as W. B. Yeats put it, “a tattered coat upon a stick.”² I know, finally, that I will as a self someday be dead, that I will be no more, that I will disappear from the face of the earth. I no less know that, before this happens, I must cross the fearful border between life and death.

There was a time when those three threats to the self were often distinct and separable. One could die of a sudden, young and healthy until death struck; of course that still happens to some in our society, especially those young males taken by accident or random violence. Yet most of us will now live into old age, so that illness, aging, and death will accompany one another, imperceptibly blending together. Because we are aging, we are at a rising risk of illness, and because of that risk, we face an increased threat and eventual certainty of death. When we think of death now, it cannot, and probably should not, be so distinctly separated from the biological decline that old age brings with it. That is not everyone’s death by any means, but it is one that most of us can likely expect, barring bad luck or misadventure.

In parallel with the self that must live with its prospect of illness, aging, and death is the self that moves back and forth between its own good and needs and those of others. There is the self that reflects upon its own life and destiny, trying to understand things and endure them. It is a self full of narrow interests—“What is good for me?,” “What do I want (whether good for me or not)?”—and full of yearnings, asking, “What kind of person am I?,” and “What kind of person do I want to become?” This is the self that looks inward. There is also the social self. It gauges its relationship with others, wanting to know how to live with them and what it should hope, or ask, or demand of them. The latter self can focus its moral lens on the small universe of family and friends, or on the larger one of society and the public space. It can ask, “What kind of citizen do I want to be?,” and “What kind of society do I wish to see take shape?” In reality, of course, the private and public selves are in constant exchange, even argument. How should I balance my private interests against the claims of others? Narcissism struggles with altruism; the insistent clamor of desires and wants wrestles with the claims of morality.

To these old struggles has been added the force and power of modern medicine. By changing our bodies and their prospects, medicine changes the self and its expectations as well. I know that I am likely to live a longer and healthier life than my grandparents, and when I become sick I will have a better chance of surviving. Medical powers and possibilities have become the constant companion of the self in its effort to live with mortality.

A Tame Death

Yet we have become ambivalent about that companionship, by turns eager and troubled, desperate to have it but fearful that it will get the better of us, bringing us a death of a kind we do not want at a time we do not want, much later than it should have occurred. In response to that ambivalence, without knowing it, without using quite that language, we have come to feel only now the loss of what the late French historian Philippe Ariès called a “tame” death.³ By that he meant a death that was tolerable and familiar, affirmative of the bonds of community and social solidarity, expected with certainty and accepted without crippling fear. That kind of human ending, common to most people throughout history until recently, Ariès contrasted with the “wild” death of technological medicine. The latter death—which began to occur in the nineteenth century—is marked by undue fear and uncertainty, by the presence of medical powers not quite within our mastery, by a course of decline that may leave us isolated and degraded. It is wild because it is alien from, and outside of, the cycle of life, because modern technology makes its course highly uncertain, and because it seems removed from a full, fitting presence in the life of the community.

What is the “tame death” of which Ariès wrote? “The tame death,” he argued, “is the oldest death there is.”⁴ To make his case, he opens his great history of death in Western culture, The Hour of Our Death, with what might strike us as an implausible example of an ordinary death in the Middle Ages, that of the knight Roland, described in the Chanson de Roland. Death is known to be coming, is then prepared for, and takes place calmly amid a circle of friends and acquaintances. Yet Roland’s death is not an exceptional death, even though he is a knight. It distills popular and oral traditions of a reality—the “unchronicled death throughout the long ages of the most ancient history, and perhaps prehistory.”⁵ It was a death marked above all by three distinct features. The notion of “familiar simplicity”⁶ captures two of them, its public character the third. Death was familiar because, with short life spans making death an event among every age group, it was a steady and routine part of daily life. It was marked by simplicity because of its ritualized, unchanging features over the centuries, little altered by medical or social change.

A passage from Solzhenitsyn’s Cancer Ward reflects the same idea, one that lingered on well into the nineteenth and early twentieth centuries: “The old folk,” his character Yefrem says in describing the way they faced death, “didn’t puff themselves up or fight against it and brag that they weren’t going to die—they took death calmly. They didn’t stall squaring things away, they prepared themselves quietly and in good time, deciding who would have the mare, who the foal … and they departed easily, as if they were now moving into a new house.”⁷ A comparable perspective can be found closer to home. It is illustrated by an incident reported from a hospital during the American Civil War. In these institutions, notable for their filth and their poor staffing, and filled with the cries and moans of the maimed and wounded, “‘The patients would see that the doctor gave them up,’ a Confederate steward recalled, ‘and would ask me about it. I would tell them the truth. I told one man that and he asked ‘How long?’ I said ‘Not over twenty minutes.’ He did not show any fear. They never do. He put his hand up so and closed his eyes with his own fingers and he stretched himself out and crossed his arms over his breast. ‘Now fix me,’ he said. I pinned the toes of his stockings together. That was the way we lay corpses out, and he died in a few minutes. His face looked as pleasant as if he was asleep. And many is the time the boys have fixed themselves that way before they died.”⁸

Or consider the words of the seventeenth-century poet Ben Jonson, in “An Elegy on the Lady Jane Paulet”:

With gladness Temper d her sad parents tears;

Made her friends joys, to get above their fears.

And, in her last act, taught the standers by,

With admiration and applause, to die!⁹

A third important feature of the tame death was its public character. “The vile and ugly death of the Middle Ages,” Ariès writes, “is … the secret death that is without witness or ceremony: the death of the traveler on the road, or the man who drowns in the river, or the stranger whose body is found at the edge of a field, or even the neighbor who is struck down for no reason.”¹⁰ A tame death, by contrast, is public and ceremonial. It takes place amid a circle of family, friends, and children, and in many places it was acceptable for strangers to come in off the street to be with the dying person. Only perhaps at the very end, for a few hours only, was a person left alone; otherwise, nothing was more important than to keep the dying fully and richly within the human community until the last moments.

The motive behind the desire for a public death was not simply to comfort the dying, but, more important, to express communal solidarity in the face of death: “It was not only an individual who was disappearing, but society itself that had been wounded and that had to be healed…. The rites in the bedroom or those of the oldest liturgy express the conviction that the life of a man is not an individual destiny but a link in an unbroken chain, the biological continuation of a family or a line that begins with Adam and includes the whole human race…. Thus, death was not a personal drama but an ordeal for the community…. It could not be a solitary adventure but had to be a public phenomenon involving the whole community.”¹¹

How could a tame death have been possible? Can we, moreover, believe a historical account that sounds just a bit too perfect, too romantic, and makes of death an event too lacking in the fear, the dread, that we have come to associate with it? I have come to think Ariès’s account essentially correct. Yet I have been surprised at the resistance many people have to the idea of a tame death in the past, as if it simply could not have been that way. We seem compelled to believe that death must have been worse in earlier times, that surely modern medicine must have brought great improvement. Not necessarily.¹² Both biology and history make Ariès’s account of a tame death plausible and believable. An important biological fact underlies the picture of death he develops from the historical record. For the most part (as I will develop more on p. 42), people in earlier times typically died of infectious disease of rapid onset and quick crisis; they did in fact die over a relatively short period of time. The long and lingering death of our day was uncommon. This meant that someone could be awake and alert, even if suffering, until the last moments. Death was more a discrete event than a drawn-out, indefinite process. That discreteness made possible—and perfectly plausible in historical retrospect—a public leave-taking, efforts at reconciliation, the disbursing of property, and a formal, final parting with those close to the dying person. Such features were the essence of the ritual.

The biological record makes medically plausible, then, the picture of dying Ariès develops. But it is no less important to note the emphasis he places on one necessary precondition of a tame death. Death is not, and should not become, a glorious event to be sought and embraced. It is an evil. It ruptures the solidarity of the human community. It forces the dying person out of the lives of those around her, a loss both to her and to others. The source of the evil is the “savagery of nature,” a nature to be accepted but not romanticized.¹³ “Familiarity with death is a form of acceptence of the order of nature.”¹⁴ “Death,” as Ariès puts it, “may be tamed, divested of the blind violence of natural forces, and ritualized, but it is never experienced as a neutral phenomenon…. Resignation was not, therefore, submission to a benevolent nature, or a biological necessity, as it is today, as it was no doubt among the Epicureans or Stoics; rather it is the recognition of an evil inseparable from man.”¹⁵

If modern medicine was itself accepted—its promise was great, its transformation of mortality striking—the wild death it brought was not. That was an unwelcome part of the bargain of medical progress. What was to be done about it? The response has been uncertain and evasive, Ariès’s own judgment concerning the direction of that response is clear. The Hour of Our Death ends on a note of bemused irony: “Medicine reduced pain…. The goal glimpsed in the eighteenth century had almost been reached. Evil was no longer part of human nature…. It still existed, of course, but outside of man, in certain marginal spaces that morality and politics had not yet colonized, in certain deviant behaviors such as war, crime, and nonconformity … but which one day would be eliminated…. But if there is no more evil, what do we do about death? To this question modern society offers two answers. The first is a massive admission of defeat. We ignore the existence of a scandal that we have been unable to prevent; we act as if it did not exist…. [The second] is to reduce death to a feigned indifference. Either way, the result is the same: Neither the individual nor the community is strong enough to recognize the existence of death.”¹⁶

Ariès was by no means the only author to strike the note of “the denial of death,” the title of Ernest Becker’s Pulitzer Prizewinning book of 1973, and anticipated earlier in Geoffrey Gorer’s celebrated 1955 article “The Pornography of Death.”¹⁷ Gorer first called attention to the peculiar way in which Victorian sexual constraints were gradually overthrown, but those same constraints were used to suppress the public expression of death. To this Becker added an acute analysis of the stratagems used culturally and by the individual unconscious to drive death from our conscious life, simply to declare (without winning) a psychological victory over our fear of dying. He tellingly cites a striking passage written by William James many years earlier: “Let sanguine healthy-mindedness do its best with its strange power of living in the moment and ignoring and forgetting, still the evil background is really there to be thought of, and the skull will grin in at the banquet.”¹⁸ Has it always been that way? Not necessarily. The contribution of Philippe Ariès was to show, in the broad historical panorama of Western responses to death, how radical, how truly new, that suppression was. A wild death is not only a technological death, but a hidden, dirty death, one that is shunned, feared, and denied.

The Tame Death Lost

The tame death did not survive. The combination of cultural and religious changes, and the rise of scientific medicine, brought it to an end. By the eighteenth century, life expectancies had begun their shift toward modern standards; they were accelerating still more rapidly by the end of the nineteenth century. The great cultural changes that took place during these centuries showed a move away from the idea of death as a fixed, collective destiny, to one that focused on the death of the isolated self, and from there to the death of the other, the loved one taken away amid grief and with a sense of enduring loss.

Death soon ceased to be simple and familiar. The emergence of nineteenth-century rituals of dramatic mourning, of death pictured as the brutal snatching of the loved one from the unwilling grasp of family and friends, in one way carried on the tradition of death as a communal evil, destroying the fabric of human relationships. But in another way it also signaled a gradual shift to death as a more segregated personal and psychological event, first from the community at large to the family, and then, by the late twentieth century, taken out of the hands of families and put into those of doctors and medical institutions.

The first steps of this transformation were subtle. By the nineteenth century, as so beautifully caught in Tolstoy’s story “The Death of Ivan Ilyich,” what Ariès calls the “beginning of the lie” appears, the hiding of imminent death from the dying person, the pretense that recovery was just around the corner. “The worst torment,” Tolstoy writes of Ivan, “was the lie, this lie that for some reason was accepted by everyone, that he was only sick and not dying, and that if he would only remain calm and take care of himself, everything would be fine…. He suffered because they lied and forced him to take part in this deception… this lie that degraded the formidable and solemn act of his death.”¹⁹ From the beginning of the lie to the individual it was not a long step to the beginning of the lie to the larger society. The rise of the funeral industry, the removal of the body from the home and the adornment of it with the cosmetic veneer of life for ceremonial display, the gradual transformation of grief from a public to a private event, and the elimination of mourning clothes were all ways of hiding death. The emergence of the institutional death in hospitals and nursing homes by the midtwentiet...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgments
• Dedication
• Contents
• Introduction: Can Death Be Shaped to Our Own Ends?
• Chapter 1 The First Illusion: Mastering Our Medical Choices
• Chapter 2 Stripping Death Bare: The Recovery of Nature
• Chapter 3 The Last Illusion: Regulating Euthanasia
• Chapter 4 Living With the Mortal Self
• Chapter 5 Nature, Death, and Meaning: Shaping Our End
• Chapter 6 Pursuing A Peaceful Death
• Chapter 7 Watching and Waiting
• Notes
• Index