Everything proceeds as if the romantic model as it existed in the middle of the nineteenth century underwent a gradual dismantling. First, in the late nineteenth century, there were the changes that occurred in the early stages of dying, the period of very serious illness during which the patient is kept in ignorance and isolation: the case of Ivan Ilyich. Then, in the twentieth century, beginning in World War I, came the taboo against mourning and everything in public life that reminded one of death, at least the so-called natural (i.e., nonviolent) death. The image of death was contracting like the diaphragm of a photographic lens being stopped down. There remained only the actual moment of death, which at the time of Ivan Ilyich, and long afterward, retained its traditional characteristics: the reviewing of the life, the public quality, the scene of the farewells. But after World War II even this last survival disappeared, owing to the complete medicalization of death. This is the third and final stage in the process of reversal.
The essential fact is the well-known advance in surgical and medical techniques, which bring into play complex equipment, competent personnel, and frequent interventions. These techniques can only be fully effective in the hospital, at least so it has been believed until our own time. The hospital is not only a place of medical expertise, observation, and instruction, it is a focal point where auxiliary services such as pharmaceutical laboratories and rare, costly, and delicate equipment are concentrated, giving the hospital a local monopoly on death.
As soon as an illness seems serious, the doctor usually sends his patient to the hospital. Advances in surgery have brought parallel advances in resuscitation and in the reduction or elimination of pain and sensation. These procedures are no longer used only before, during, or after an operation; they have been extended to all the dying, in order to relieve their pain. For example, the dying man is given food and water intravenously, thus sparing him the discomfort of thirst. A tube runs from his mouth to a pump that drains his mucus and prevents him from choking. Doctors and nurses administer sedatives, whose effects they can control and whose doses they can vary. All this is well known today and explains the pitiful and henceforth classic image of the dying man with tubes all over his body.
By a swift and imperceptible transition someone who was dying came to be treated like someone recovering from major surgery. This is why, especially in the cities, people stopped dying at home—just as they stopped being born at home. In New York City in 1967, 75 percent of all deaths occurred in hospitals or similar institutions, as compared with 69 percent in 1955 (60 percent for the United States as a whole). The proportion of deaths in hospitals has risen steadily since then. In Paris it is common for an old man with a cardiac or pulmonary condition to be hospitalized so that he can have a painless death. It might be possible to provide the same care by hiring a visiting nurse, but home care is less well covered, if at all, by Social Security. It also imposes on the family a burden that it can no longer bear, especially when the wife works and there is no child, sister, cousin, or neighbor available.
At the beginning of this chapter I talked about the indecency of serious illness, the physical distaste it inspires, the need to conceal it from others and from oneself. To square their conscience, the family confuses their unconscious intolerance for the sordid aspects of disease with the requirements of cleanliness and hygiene. In most cases, especially in large cities like Paris, the family has made no attempt to keep the dying at home or to bring about social legislation less favorable to their departure.
The hospital is no longer merely the place where one is cured or where one dies because of a therapeutic failure; it is the scene of the normal death, expected and accepted by medical personnel. In France this is not true of the private clinics, which do not want to frighten their clientele, and also perhaps their nurses and doctors, by the presence of death. When death does arrive, when one is unable to avoid it, they immediately send the body home; one is regarded as having died in the eyes of the state, the medical expert, and the world.
This dispatching of the body is not possible in public hospitals, which tend therefore to be crowded with the very old, the incurable, and the dying. In some countries there is a movement to keep these patients in places that specialize in painless death and preparation for it, places where they could avoid the disadvantages of a medical organization designed for another purpose, to keep the patient alive at all costs. This is the new conception of the “hospice,” the model for which is the Hospice of Saint Christopher, in the suburbs of London.
Today Ivan Ilyich would have been sent to the hospital. Perhaps he would have been cured, and there would be no novel.
This transfer of death to the hospital has had profound consequences. It has accelerated an evolution that began in the late nineteenth century and pushed it to its logical conclusion. Death has been redefined: It has ceased to be the instant that it became in the seventeenth century, but whose punctuality it had not until then possessed. In the traditional mentality, the sense of the moment of death was softened by the certainty of a continuation: not necessarily the immortality of the Christians, but a subdued prolongation of some kind. After the seventeenth century, the more widespread belief in the duality of the soul and the body and in their separation at death eliminated the margin of time. Death became an instant.
The medicalized death of today has restored this margin, but by borrowing time from this life, not from the beyond. The time of death has been both lengthened and subdivided. Sociologists have the satisfaction of being able to apply their classificatory and typological methods; thus, there is brain death, biological death, and cellular death. The old signs, such as cessation of heartbeat or respiration, are no longer sufficient. They have been replaced by the measurement of cerebral activity, the electroencephalogram.
The time of death can be lengthened to suit the doctor. The doctor cannot eliminate death, but he can control its duration, from the few hours it once was, to several days, weeks, months, or even years. It has become possible to delay the fatal moment; the measures taken to soothe pain have the secondary effect of prolonging life.
Sometimes this prolonging of life becomes an end in itself, and hospital personnel refuse to discontinue the treatments that maintain an artificial life. The world will remember the Shakespearean agony of Franco, surrounded by his twenty doctors. The most sensational case is no doubt that of Karen Ann Quinlan, an American girl of twenty-two who, for thirteen months, was kept on a respirator and fed and given antibiotics intravenously. No one expected that she would ever regain consciousness. In spite of the pressure of the family and a court order, the hospital persisted in keeping her alive artifically because she was not in a state of brain death, that is, her electroencephalogram was still registering. It is not our purpose here to discuss the ethical problems raised by this rare case of “therapeutic tenacity.” What interests us is that medicine can cause someone who is almost dead to remain alive almost indefinitely: and not only medicine but the hospital itself, that is, the whole system that turns medical activity into a business and a bureaucracy that obeys strict regulations regarding method and discipline.
The example of Karen Ann Quinlan is exceptional, a borderline case caused specifically by the persistence of cerebral activity. Today doctors usually discontinue treatment when brain death has been determined, thus allowing vegetative life to be extinguished as well. In 1967 there was a public outcry when it was discovered that in a certain hospital in England the staff was marking the beds of certain old people NTBR, that is, “not to be resuscitated.”22
The duration of death may therefore depend on an agreement involving the family, the hospital, and even the court, or on a sovereign decision of the doctor. The dying man, who had already formed the habit of confiding to survivors wishes he no longer included in his will, abdicated gradually, abandoning to his family the control of the end of his life, and of his death. The family, in turn, passed this responsibility on to the scientific miracle worker, who possessed the secrets of health and sickness and who knew better than anyone else what should be done.
It has been noted that the doctor is less mysterious and less absolute in the home than he is in the hospital. This is because in the hospital he is part of a bureaucracy whose power depends on discipline, organization, and anonymity. These hospital conditions have given rise to a new model of medicalized death.
Death has ceased to be accepted as a natural, necessary phenomenon. Death is a failure, a “business lost.”23 This is the attitude of the doctor, who claims the control of death as his mission in life. But the doctor is merely a spokesman for society. When death arrives, it is regarded as an accident, a sign of helplessness or clumsiness that must be put out of mind. It must not interrupt the hospital routine, which is more delicate than that of any other professional milieu. It must therefore be discreet. What a shame that Mélisande did not die in a hospital! She would have made a good patient. The doctors and nurses would have made a fuss over her and remembered her fondly. It may be desirable to die without being aware of it, but it is also correct to die without anyone else being aware of it either.
If death is too noticeable, too dramatic, and too noisy, most especially, if it is also dignified, it arouses in the staff an emotion quite incompatible with their professional life, still less with hospital routine. For death has been brought under control in order to reconcile an accidental, sometimes inevitable phenomenon with the psychological security of the hospital.
Hospital personnel have defined an “acceptable style of facing death.” This is the death of the man who pretends that he is not going to die. He will be better at this deception if he does not know the truth himself. His ignorance is more necessary than it was in the time of Ivan Ilyich. His ignorance is for him a factor in his recovery, and for the hospital staff a necessary condition of their efficiency.24What today we call the good death, the beautiful death, corresponds exactly to what used to be the accursed death: the mors repentina et improvisa, the death that gives no warning. “He died tonight in his sleep: He just didn’t wake up. It was the best possible way to die.”
But today, with the advances in medicine, such an easy death has become rare. It takes skill to bring the slow death of the hospital closer to the mors repentina. The surest method is no doubt the ignorance of the patient. But this strategy is sometimes foiled by his diabolical cunning in interpreting the attitudes of the doctor and nurses. So, instinctively, unconsciously, the staff forces the patient to feign ignorance. In some cases the silence takes the form of a conspiracy; in others, fear of a confession or a call for help cuts off all communication.
The patient’s passivity is maintained by sedatives, especially at the end, when the pain becomes unbearable and would otherwise produce the “horrible screams” of an Ivan Ilyich or a Mme. Bovary. Morphine controls the great crises, but it also diminishes a consciousness that the patient then recovers only intermittently.
Such is today’s “acceptable style of facing death.” The opposite is the “embarrassingly graceless dying,” the bad death, the ugly death without elegance or delicacy, the disturbing death. This is always the death of a patient who knows. In some cases he is rebellious and aggressive; he screams. In other cases, which are no less feared by the medical team, he accepts his death, concentrates on it, and turns to the wall, loses interest in the world around him, cuts off communication with it. Doctors and nurses reject this rejection, which denies their existence and discourages their efforts. In it they recognize the hated image of death as a phenomenon of nature, whereas they had turned it into an accident of illness that must be brought under control.25In the case, fortunately more frequent, of the good death, one sometimes ends up not knowing whether the patient is dead or alive. This is the most desirable situation. Thus, David Sudnow tells us that a young student nurse in an American hospital could not get a seriously wounded man to drink through a straw. She called her supervisor for help. “Why, honey, of course he won’t respond. He’s been dead for twenty minutes!” It would have been a beautiful death for everyone if the young student nurse had not had an attack of hysterics.26
In charity hospitals the staff takes advantage of this uncertainty to select the most favorable moment for certain procedures. For example, they close the eyes of the dying a little while before they die; it’s easier. Or they arrange to have them die in the early morning, just before the night shift leaves. These are presumptuous and extreme acts in unsupervised and obscure places, the refuges of the old and abandoned. Yet their very crudeness reveals some aspects of that bureaucratization and “management” of death that are inseparable from the hospital as institution and the medicalization of death, and are to be found everywhere. Death no longer belongs to the dying man, who is first irresponsible, later unconscious, nor to the family, who are convinced of their inadequacy. Death is regulated and organized by bureaucrats whose competence and humanity cannot prevent them from treating death as their “thing,” a thing that must bother them as little as possible in the general interest.27The Return of the Warning;The Demand for Dignity; Death Today
This was the situation at the end of the 1950s. It has changed, especially in the Anglo-Saxon world, in one essential respect: the ignorance of the dying. But in France, the attitude of the early twentieth century still exists. In 1966 the journal Médecine de France published a discussion between the philosopher Jankélévitch and three doctors, J.-R. Debray, P. Denoix, and P. Pichat. “The liar is the one who tells the truth,” declared Jankélévitch. “I am against the truth, passionately against the truth.” (It is a position that is accompanied by a scrupulous respect for life and its prolongation: “Even if you should prolong the life of the patient by only twenty-four hours, your efforts would be worthwhile. There is no reason to deprive him of this day. For a doctor, life itself has value, no matter how diminished or pathetic the person who is living it.”)
Robert Laplane understands the complexity of the problem: “M. Denoix was right to stress that there are cases in which the truth must be told in order to relieve the patient. I have said that most patients ask only not to be confronted with the truth about their condition. This is true in the majority of cases, but it also happens sometimes that we doctors are afraid of this truth, that we take refuge behind our authority, that we play hide-and-seek.… There are doctors who never say anything. The lie of convenience very often takes the form of silence.”
But in the United States in the past few years a complete reversal of attitudes has been taking place. The change was not initiated by the medical fraternity; it has been imposed on them by a group of psychologists, sociologists, and psychiatrists who became aware of the pitiful situation of the dying and decided to defy the taboo. It was not easy. Before 1959 when Herman Feifel wanted to interview the dying about themselves, no doubt for the first time, hospital authorities were indignant. They found the project “cruel, sadistic, traumatic.” In 1965 when Elisabeth Kübler-Ross was looking for dying persons to interview, the heads of the hospitals and clinics to whom she addressed herself protested, “Dying? But there are no dying here!” There could be no dying in a well-organized and respectable institution. They were mortally offended.
But this resistance on the part of hospital personnel could not discourage the interest and sympathy of a few pioneers, who rapidly gained adherents. The first manifestation of the new attitude was an anthology edited by Feifel in 1959, The Meaning of Death.28 Ten years later another collective work, The Dying Patient, contained a bibliography of 340 titles published after 1955, all in English, on the subject of dying, as distinct from funerals, cemeteries, or mourning. The quantity of this literature gives some idea of the movement that shook the little world of the social sciences and that eventually reached the medical and hospital establishment. It was a woman who played a vital role in this effort, because she was a doctor and knew how to talk to her colleagues, in spite of many discouragements and humiliations. I refer, of course, to Elisabeth Kübler-Ross, whose fine book On Death and Dying, published in 1969, has had a profound impact in America and England, where more than a million copies have been sold.29The new trend, born of pity for the alienated dying, was directed toward the amelioration of the actual process of death by restoring to the dying man his forgotten dignity. Banished from medical expertise except in cases of legal medicine, regarded as a temporary failure of science, death had not been studied for its own sake; it had been dismissed as a subject of philosophy that had nothing to do with science. Recent research is attempting to restore its reality and reintegrate it into medical study, from which it disappeared after the end of the nineteenth century.
The doctor, who along with the priest had long been the witness and messenger of death, these days has no experience of death outside the hospital. But it is now believed that a better-informed doctor will be able to prepare his patients better and will be less inclined to take refuge in silence.
It is the dignity of death that is at issue. This dignity requires first of all that death be recognized, not only as a real state but as an important event, an event that should not be conjured away.
One of the conditions of this recognition is that the dying man be informed of his state. English and American doctors have yielded to the pressure very rapidly, no doubt because it enabled them to share a responsibility that they were beginning to find intolerable.
Are we on the eve of a new and profound change in attitudes? Is the rule of silence becoming obsolete?
On May 13, 1976, an American television network broadcast an hour-long film called Dying, which received considerable attention, especially in the press, although many Americans ignored it.
The director, Michael Roemer, observed death in postindustrial America the way an ethnologist might study a primitive society. He took his camera into the homes and hospital rooms of terminal cancer patients and their families and lived intimately with them over a period of time. The resulting documentary is extraordinary and upsetting. It reveals the present state of public opinion better than all the literature published in the last few years.
One trait is common to the four cases presented and corresponds closely to the traditional death with which we are familiar. The patient and his family are given very specific notification by the doctor of the diagnosis and the probable course of the disease.
The first case is presented in the form of a monologue, in which a young woman in her thirties tells about the illness and death of her husband. They both knew what was happening. Indeed, the awareness the couple had of the situation, far from traumatizing them, brought them closer than ever. Surprising as it may seem, the wife said that the very last days were the happiest and most beautiful of her life. More than a century later, I seem to hear the accents of Albert or Alexandrine de La Ferronays. Here in the middle of the twentieth century, I recognize the romantic model of the beautiful death.
The fourth and last case is the long passion of a black preacher in his sixties. This time the camera takes us inside his modest home, among his large and harmonious family: his wife, whose simplest gestures have the natural nobility of a great tragedian; his married children; his grandchildren, still very young. He has cancer of the liver. We attend the consultation during which the doctor tells him and his wife that he is going to die. We sense what is going through their minds: a mixture of sadness and resignation, pity and tenderness, and faith. We are in church on Sunday when the minister makes his farewells to the congregation, who punctuate his sermon with short cries of response. We accompany him and his son on a pilgrimage to his childhood home in the Deep South, to visit the grave of his parents. When death approaches, we are at his bedside in the crowded room in which the whole family is gathered, the old and the young; we see the children come to kiss his deeply lined but peaceful face for the last time. Finally, we attend the funeral ceremony in the church, we watch the congregation file by the open coffin, we hear the singing and the tears. There is no mistaking it: This is the tame death, the familiar and public death.
The other two cases have nothing in common with our ancient or known models. On the contrary, they are typical of the new death of today among young adults in the comfortable milieu of the golden suburbs.
First there is the case of a young woman of thirty who has cancer of the brain and who lives with her mother. Her shaved head has been disfigured by the operation she has undergone, her body is half paralyzed, her speech difficult. However, she speaks to us very openly, in a detached manner, about her life, and about the death she expects any day now. She is not afraid of it; one must die; she doesn’t care when it is, as long as she is unconscious, in a coma.
She impresses us by her courage, but also by a complete absence of emotion, as if death were something of no importance, mors ut nihil. This resembles the omnia ut nihil of the seventeenth century, except that here the nihil has lost its tragic sense and has become quite ordinary.
The patient would be very much alone without the silent and attentive presence of her mother. As the disease grows worse, it reduces her to the state of dependence of a young child or animal who must be fed with a spoon and who can do nothing except open her mouth. Outside the complicity that binds mother and daughter beyond tears or confessions lies the solitude of beautiful empty houses and large deserted gardens. They are totally alone.
The other case takes place in a similar setting. A man of about the same age also has cancer of the brain, but he is married and the father of two teenage sons. His wife, who is traumatized (and perhaps upset by the presence of the camera), is trying to avoid all emotion and to convey an air of realism and efficiency. One afternoon she calls her husband in the hospital to inform him that she has succeeded in obtaining a plot in the cemetery. She speaks in a detached tone, as if she were talking about a hotel reservation. She has not even bothered to send the children out of the room, and they play on as if they were oblivious to everything.
But beneath this facade, the poor woman is ready to crack. One day, at the end of her rope, she goes to see the doctor—still on camera—in revolt. Her husband is so weak that he has become indifferent and takes no part in the life of the family. And yet the interminable prolongation of his life makes it impossible for her to remarry, to find another father for her children. And tomorrow it may be too late! One senses her wishes, but the doctor refuses to understand.
In the last images we see the patient, after he has left the hospital for the last time, back in his beautiful house and garden, imprisoned in a silence from which he will never emerge. The nonverbal communication that existed between mother and daughter in the preceding case is absent. Here the solitude is total.
The new phenomenon revealed by Dying is not so much this solitude as the desire to divulge things having to do with death and to speak about them naturally instead of hiding them. But the difference is not as great as it appears, and the exhibition achieves the same purpose as the silence of the taboo: to stifle emotion, to desensitize behavior. Indeed, the audacity of Dying seems more effective than the shame of the taboo. It succeeds even better in ruling out all possibility of communication; it ensures the most perfect isolation for the dying. Both attitudes, which are really very close, are responses to the uneasiness caused by the continued existence of death in a world that is eliminating suffering: moral suffering—hell and sin—in the nineteenth century; and physical suffering—pain and disease—in the twentieth (or twenty-first) century. Death should have disappeared along with disease, but it persists; it is not even any longer in retreat. Its persistence is a scandal whose presence calls up two possible attitudes. One is the attitude of the taboo, which consists in behaving as if death did not exist by banishing it from daily life. The other is the attitude of Dying: accepting death as a technical fact but reducing it to the state of an ordinary thing, as insignificant as it is necessary.
But even in the second case, some people think that the state of the dying has become intolerable. Dying must be made bearable, either by allowing the natural dignity of the dying to reappear, as in the case of Mélisande, or by means of a training which is learned like an art, a training such as Elisabeth Kübler-Ross gives at the University of Chicago. There students behind a one-way mirror are able to observe dying persons who have agreed to talk about themselves with men of feeling and science, the new masters of the art of dying. Those who receive this training may be able to alleviate some of the effects of death in the world of technology, but this does not mean that they will be able to eliminate death itself.
In the current debate, those who are not satisfied by such alleviations and who reject them as ambiguous compromises are led to contest the medicalization of society. Such is the case of Ivan Illich, who has the courage to take his idea to its logical conclusion. For him, the medicalization of death is only one case, albeit a particularly significant and serious one, of the general medicalization of culture. For him, the improvement of death would necessarily involve its demedicalization and the demedicalization of society as a whole.30But Ivan Illich is only one man. On the whole, the debate opened in 1959 by Feifel has remained confined to an intelligentsia, albeit a large one. Now and then this intelligentsia has contact with a wider public, which on these rare occasions reveals its underlying uneasiness and anxiety. For the reopening of discussion on death has not shaken society’s determination to repress the real image of death. I have some recent examples that show the persistence of the rejection of mourning. When a young European woman living in the United States suddenly lost her mother, she went abroad to attend her funeral, but she came back as soon as she could, dazed and suffering, to be with her husband and children. She hoped to have the support of her friends, but the telephone did not ring. Like Geoffrey Gorer’s sister-in-law, she was in quarantine: mourning in reverse. This is a very unusual attitude in a society where people are quick to feel pity and are always accessible.
Some people want to improve death in the hospital, provided death does not leave the hospital. However, there is a breach in the medical defense system through which life and death, so carefully separated, may well come together in a flood of popular protest. This is the question of euthanasia and the power to discontinue or prolong treatment.
Today nobody is really consciously concerned about the manner of his own death. But the image of another person dying in a tangle of tubes all over his body, breathing artificially, is beginning to break through taboos to galvanize a sensibility that has long been paralyzed. Perhaps public opinion will be aroused and will seize on the subject with the passion it has shown for other vital issues, notably abortion. Many things would be changed. Claudine Herzlich asks, “Are we about to witness a resurgence of the problems of death that will go beyond professional circles and eventually bring about a social movement as important as that of abortion? We know today that in some cases, at least, people die [or do not die] because someone else has decided it was time. Are people going to demand to die when they are ready to die?”31 We have no idea yet, but the very fact that the question is being raised in this way is significant. The most recent model of death is associated with the medicalization of society, that is, with the segment of industrial society in which the power of technology has been most widely accepted and is still least contested. For the first time, people are questioning the unconditional benevolence of this power. It is in this area of the collective conciousness that a change in contemporary attitudes might well occur.
Ariès, Philippe [date]
The hour of our death
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