Printer Friendly

Pursuing a peaceful death.

On the face of it, one might be forgiven for thinking that death at the hands of modern technological medicine should be a far more benign, sensitive event than it was in earlier times. Do we not have a much greater biological knowledge, thus enabling more precise prognoses of death? Do we not have more powerful analgesics, thereby enhancing the capacity to control pain?

Do we not possess more sophisticated machines, capable of better managing organs gone awry? Do we not have greater psychological knowledge, suitable to relieve the anxieties and suffering of an anticipated death? Do we not, adding all that up, have at hand exactly what we need to enhance the possibility of a peaceful death?

The answer in each case is yes and no. Yes, we do have much more knowledge than we did prior to modern medicine. But no, that knowledge has not made death a more peaceful event, either in reality or in anticipation. The enhanced biological knowledge and technological skill have served to make our dying all the more problematic: harder to predict, more difficult to manage, the source of more moral dilemmas and nasty choices, and spiritually more productive of anguish, ambivalence, and uncertainty. In part this is because, with the advent of modern medicine, the earlier superstructure of meaning and ritual was dismantled, thus setting death adrift in a world of uncertain value and import. But also in part it is because modern medicine brought with it a stance toward death that is ambivalent about its necessity and inevitability.

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 Aries called a "tame" death.[1] 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, Aries 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 technologies make its course highly uncertain, and because it seems removed from a full, fitting presence in the life of the community.

The technologies of that death, ever more clever in their ability to sustain failing organs, provide a set of tools that endlessly sustain our ambivalence and allow it to be played out in tortuous detail. Precisely because they have opened up new possibilities in the ancient struggle with our mortality, those technologies have made our understanding of that mortality all the more difficult. To confound us more, they have misled us into thinking we have a greater dominance over our mortality than was earlier the case.

What can be done to gain a better way of thinking about medical technology and our human mortality? How can that technology be made to serve a peaceful death, not to be its enemy? What can be done to bring about a change? I want to try to make plausible a different way of thinking about the use of technology and then suggest some ways of implementing it. The change I propose can be put very simply, however strange and odd it may sound. We should begin backward. Death should be seen as the necessary and inevitable end point of medical care.

Death as the End Point of Medical Care

In considering its appropriate goals, medicine should, so to speak, simultaneously work backward as well as forward. Medicine now characteristically works forward only, looking to promote the good of life, both to lengthen life and improve its quality. Death is reluctantly admitted into the realm of medicine as the limit to achieving those ends, but that limit is itself uncertain at its boundary, not readily located. Thus also is the termination of treatment judged to be a lesser moral evil, because the quality of life cannot be sustained at the level at which, ideally, medicine would like to sustain it.

What if, however we began our thinking with death? What if we asked how medicine should conduct itself to promote both a good life and a peaceful death? What if medicine once and for all accepted death as a limit that cannot be overcome and used that limit as an indispensable focal point in thinking about illness and disease? The reality of death as a part of our biological life would be seen, not as a discordant note in the search for health and well-being, but as a foreseeable endpoint of its enterprise, and its pacification as a proper goal of medicine from the outset. What if the aim of scientific medicine was not an endless struggle against death, with the fight against disease as the token of that struggle, but helping humans best live a mortal, not immortal, life?

These questions are almost naive. But I see no evidence that they are deeply and persistently asked in modern medicine. If they were, then death would have to be taken seriously, allowed an honored role in the ideals of medicine, not treated as only a necessary evil and a temporary scientific failure. The acceptance, management, and understanding of death would become as fully a part of the mainline enterprise of medicine as the pursuit of health. It would not be necessary even to conceive of a hospice movement, a separate system of caring for the dying; that would be taken for granted as central to the enterprise of medicine itself, not a specially constructed sideshow, out of sight of the main tent.

If the ordinary goal of medicine is the preservation or restoration of health, death should be the understood and expected ultimate outcome of that effort, implicitly and inherently there from the start. The only question is when and how, not whether. Medicine's pursuit of health should be leavened by its need when health fails, as it must, to prepare the way for as peaceful a death as possible. If death is part of the human life cycle, then care for the dying body must be integral to the ends of medicine.

Death is, to sharpen the point, that to which medical care should be oriented from the outset in the case of all serious, potentially life-threatening illnesses, or of a serious decline of mental and physical capacities as a result of age or disease. Of each serious illness--especially with the elderly--a question should be asked and a possibility entertained: could it be that this illness is the one that either will be fatal or, since some disease must be fatal, should soon be allowed to be fatal? If so, then a different strategy toward it should come immediately into play, an effort to work toward a peaceful death rather than fight for a cure.

What am I saying that is different from the present stance of medicine? At present medicine takes as its task only the pursuit of health, or the preservation of a decent quality of life, with death as the accidental result of illnesses and diseases thought to be avoidable and contingent, even though in fact still fatal. Death is what happens when medicine fails, and is thus outside its proper scientific scope. That is why, I surmise, a great medical classic, Cecil Textbook of Medicine, a primary guide for physicians, refers in only twenty-five of its twenty-three hundred pages to death (and only in five to pain)[2] For a book filled with accounts of lethal diseases and ways to treat them, there is a strikingly scant discussion--three pages only of treatment for those in the terminal phase of disease. It tells what to do to hold off death, but not what is to be done when that is not possible. That omission is a stark example of the way death is kept beyond the borders of medicine, an unwelcome, unwanted, unexpected, and ultimately accidental intruder. What if, by contrast, every section of that book dealing with potentially fatal diseases had a part dealing with the care of those dying from the disease? The care of the dying cancer patient is not identical with the care of a person dying from congestive heart disease or kidney failure. But this could never be guessed from reading standard treatment textbooks.

An incorporation of that approach in textbooks and clinical training would make clear, in the most direct way, that this disease may be, sometimes voluntarily and sometimes not, the cause of death--death, which must come to all and is thus no accident. Then the physician's task would become that of accepting a particular illness as the likely cause of death, opening the way for a peaceful death by choosing that combination of treatment and palliation of the accepted condition most likely to make it possible. The objective here would be exactly the opposite of technological brinkmanship, which goes as far as possible with aggressive treatment, stopping only when it is useless to go further. In the task of allowing a peaceful death, brinkmanship would be repudiated from the outset. Active treatment to cure disease and stop death from coming would stop well short of its technical possibilities, at that point when a peaceful death could be most assured and best managed. The worry that a patient might die sooner than technologically necessary would be actively balanced by anxiety that a patient might die later than was compatible with a peaceful death.

Deforming Our Dying

A peaceful death can be understood both positively and negatively. I will begin with the latter, specifying some ways in which our dying can be deformed. If we can better discern some of the ways that happens, the ideal of a peaceful death can be given greater substance. Our dying can be deformed in three ways: by deforming the process of dying, by deforming the dying self, and by deforming the community of the living.

Deforming the Process of Dying. The process of dying is deformed when it is subject to the violence of technological attenuation, drawn out and unduly extended by medical interventions, directly or indirectly. Technological brinkmanship is the most common way of creating the deformity--that is, pushing aggressive treatment as far as it can go in the hope that it can be stopped at just the might moment if it turns out to be futile. That brinkmanship and the gamble it represents can both save life and ruin dying; that is the dilemma it poses. The most obvious kind of technological violence comes when a particular course of treatment--some forms of chemotherapy for cancer, or cardiopulmonary resuscitation for a dying person--itself directly imposes the violence.

Less noticed, but bound to become increasingly important, is the violence done when the cure of one disease sets the stage for the advent of another, perhaps even more cruel than the death one has just averted. Consider, for instance, the person cured of cancer at seventy-five who is set up for the enhanced risk, by virtue of age alone, of the onset of a fatal case of Alzheimer's disease at eighty, or for an excessively long period of severe frailty. We increase the likelihood of spending our declining years helpless, demented, and incontinent if medicine saves our lives long enough to help us avert all of the lethal diseases that stand in the way of that (not so splendid) final outcome.

We may of course gain some extra good years before that happens, and for some it will not happen at all. I only want to underscore the gamble implicit here, a kind of technological Russian roulette with one's last years of life. We must reckon whether it is a good or bad gamble, and how much we are prepared to accept a deformed dying as a result. Increasing frailty and bodily decline are themselves part of the aging process, the wasting away that ordinarily precedes death in old age. There is no inherent evil in the dependency that withering can bring. My complaint is instead directed against a kind of medicine that drives us toward technological brinkmanship and thus needlessly exacerbates and attenuates the withering in destructive ways, genuinely deforming the process of dying. The process of dying is deformed when, through overconfidence in our power to manage technology and to manage our own ambivalence toward death, we fail to take account of what an overzealous medicine can do.

The process of dying is also deformed when there is an extended period of a loss of consciousness well before we are actually dead. It is deformed when there is an exceedingly and unduly long period of debility and frailty before death. It is deformed when there is a lengthy period of pain and suffering prior to death. Note the words I have used: "extended," "exceedingly," "unduly," and "lengthy." By these I mean to say that death may well and unavoidably be preceded by some pain and suffering, some loss of consciousness, some debility and frailty, but that we human beings have generated our own miseries when we allow technology to create a situation that produces exceedingly long periods of those evils. I offer no precise definition of " exceedingly. " Frailty and debility can be tolerated for longer periods of time than straight pain and suffering, and a few days even of unconsciousness might be tolerable.

It is when those evils go on and on that a problem, a desperate one, arises. Left unattended, the biological process of dying would not ordinarily lead to such deformities, even if it will happen in some minority of cases. That is something we can know from the dying of other biological organisms, especially higher animals, and from the historical record of human death itself before our modern era, where an extended period of dying was the exception rather than the rule. Our contemporary deformities of dying, it is then fair to say, ordinarily arise only as the result of human medical intervention.

Deforming the Dying Self. The most obvious way the dying self can be deformed is by allowing the fear of death, or the fear of what dying may do to our ideal self, itself to corrupt the self. Obsessions with a loss of control, or with a diminishment of the idealized optimal self, or with the prospect of pain, are other ways this can happen. That is to turn our dying into an occasion of unrelenting self-pity and self-castigation: I can never be again what I once was, I do not want to be what I now am, and I do not want to be what I will become as my death draws even closer.

Some delicacy is in order in trying to make this point. It is understandable that we should not want to lose all control or to become less of a self than we once were, or that we should fear pain. Anxiety, even terror, is to be expected as we approach our death, both because of the physical threats of dying and because of the challenge to our sense of self-worth and self-coherence. It is the preoccupation with those evils that introduces the potential deformity, the feeling that we cannot be worthy human beings if they are our fate, and an inability to think of anything but our losses, our failures, our diminution.

Deforming the Community of the Living. Just as we can harm the self, our sense of self-worth, in responding to the threat of death, so too can we do harm to others. If the horror of death--or, more likely, of illness, decline, and dying together--yields social policies designed to relieve that suffering at all costs, then the community of the living is put at risk. A society that takes the relief of the ordinary burdens of life (of which death is surely one) as a goal to be pursued with singular dedication must ultimately fail, putting its members in harm's way even as it does so.

This can happen when the pursuit of health and the avoidance of death become an excessively high priority, gained at the cost of ignoring other social evils. It can happen when the medical community comes to believe it must, as the price of relieving suffering, be prepared to kill or assist in suicide, thus distorting its oldest and most central traditions. It can happen when, as a community ideal, a life that includes any suffering is rejected as intolerable. It can happen when a life thought "not worth living" (the Nazi expression) is one marked by suffering, a less than ideal self, and a failure to make adequate contributions to society.

The possibility of a peaceful death will, then, require as a minimal condition that death not be deformed, either individually or socially. But more will be required to enhance its possibility.

Defining a Peaceful Death

It is not difficult, just listening to the way people talk about the kind of death they would like, to gain a decent sense of what they would count as a peaceful death. I could try to do that, but I would prefer to put it in my own voice, recognizing that there may be individual variations: * I want to find some meaning in my

death or, if not a full meaning, a way

of reconciling myself to it. Some

kind of sense must be made of my

mortality. * I hope to be treated with respect

and sympathy, and to find in my

dying a physical and spiritual dignity. * I would like my death to matter to

others, to be seen in some larger

sense as an evil, a rupturing of

human community, even if they understand

that my particular death

might be preferable to an excessive

and prolonged suffering, and even

if they understand death to be part

of the biological nature of the

human species. * If I do not necessarily want to die

in the public way that marked the

era of a tame death, with strangers

coming in off the streets, I do not

want to be abandoned, psychologically

ejected from the community,

because of my impending

death. I want people to be with me,

at hand if not in the same room. * I do not want to be an undue burden

on others in my dying, though

I accept the possibility that I may

be some burden. I do not want the

end of my life to be the financial or

emotional ruination of another

life. * I want to live in a society that does

not dread death--at least an ordinary

death from disease at a relatively

advanced age--and that provides

support in its rituals and public

practices for comforting the

dying and, after death, their friends

and families. * I want to be conscious very near the

time of my death, and with my mental

and emotional capacities intact.

I would be pleased to die in my

sleep, but I do not want a prolonged

coma prior to my death. * I hope that my death will be quick,

not drawn out. * I recoil at the prospect of a death

marked by pain and suffering,

though I would hope to bear it well

if that is unavoidable.

There is a difference between this desired peaceful death and Philippe Aries's tame death. Technological advances make it possible to manage better those conditions that could not, in the past, be made amenable to a tame death, especially the degenerative diseases of aging. We can, that is, have both the advantages of the older tame death and, with the help of technology, many improvements in contemporary death.

The most evident characteristic of a peaceful death as I have outlined it is the way it blends personal, medical, and social strands. Whatever meaning we find in our dying and death must come from within ourselves, though we may and probably will of course draw upon religious and other traditions for important help. We could also reasonably look to the larger society for public practices, rituals, and attitudes that can provide a more comforting context for the acceptance of death. A modified return to special symbols of mourning, such as black armbands for men and dark clothes for women, as well as the enhancement of groups organized for grieving spouses, or religious services, would be examples of the possibilities here. As for the relief of pain, there we can look to medical practice, and even expect from that practice some help with suffering, a more subtle condition stemming in part from an interior perception of the significance of dying and from the kind of external support we are given in the face of our anxieties.

Could a peaceful death be assured every patient? No. Medicine cannot now and probably never will be able to avert all pain and suffering or ensure a tranquil course of illness. No society could wholly overcome the fear of death or the rending of community that is death. No one can be confident that fear, anguish, or a sense of pointlessness and futility will not be one's lot, even if one has lived the kind of life most conducive to reducing that possibility. Since no one can give us, as our own, a meaning to our dying and death, we must find that for ourselves; some of us will never find it.

Since there can be no guarantee that a peaceful death will be ours, some store of courage must be available. If I am correct in my surmise that the obsessively feared loss of control of our dying is itself part of the problem--a fear that we will not be either ourselves or in command of ourselves--then one way to resist the force of this fear is to be willing to accept some loss of control. The price of obsession is undue fear. Relief can be sought in a willingness to live with, and die with, less than perfection here. Yet if we can understand that there is a middle way, then the possibility of a peaceful death can be greatly enhanced. It is at least as likely that we could create the possibility of a peaceful death for a majority of people by changing our medical attitudes and expectations as by the more violent course of euthanasia and assisted suicide, and with far less loss of other values in the process.

Medical Futility

The general orientation and resource allocation priorities of the health care system can make a considerable difference, albeit indirectly for the most part, in the care of the dying. Of more direct and immediate impact will be the aggregate effect of what clinicians at the bedside come to consider futile or marginally useful treatment. As a concept, |futility' has both medical and moral dimensions.[3] Its medical feature is that of a probability that a particular treatment for a particular person will not be efficacious, that is, it will not return the patient to good health or sustain the patient in any medically viable way. The moral feature is a judgment that some forms of medical treatment, with either a low or no probability of success, should be morally judged to be useless. Taken together, then, a judgment of medical futility is medical insofar as it relies on judgments of probability of medical outcome, and moral in that it relies upon judgments about whether the pursuit of low-probability outcomes is morally required.

There is already considerable pressure from physicians to be allowed to make judgments of medical futility on their own, without having to ask patients or their families. Their goal is not to avoid a doctor-patient interaction, but to be spared the pressure of unrealistic patient demands. It is one thing, they say, to be asked by patients or their families to stop treatment; that is acceptable. It is still another to be asked to provide treatment of a kind physicians think futile or useless; that they take to be unacceptable, a threat to their professional integrity.

Their instinct is correct and reasonable. Physicians ought not to be required to perform procedures or provide treatment that they believe will do no good. Yet it would be arbitrary to allow physicians unilaterally to make those judgments, given the fights of patients to be informed of their situation. It would be better if the standards here were established collectively, by joint bodies of lay people and physicians.

This might best be done in individual hospitals, where joint medical-lay panels could help establish an institutional policy sensitive to local needs and values. It should not, I believe, be done with individual patients on a case-by-case basis. Judgments of futility could then be made, and treatment denied, but on the basis of consensual norms and publicly visible policies.[4] The development of such policies would, of course, have a potentially significant impact on the options available to patients. Some general societal standards would come to replace unlimited patient choice.

What would be the pertinence of such a development for the termination of treatment? It would be valuable if in coming years some consensus were achieved about futile treatment. |Futility' needs, however, to be understood in two senses: futile because no benefit whatever can be achieved from treatment, and futile because, given resource limitations, the treatment is economically unjustifiable. Thus we must have a general social agreement on the right of physicians to withhold medical treatment from persons in the persistent vegetative state, and an agreement on the forms of medical treatment that would be considered futile for those faced with imminent death from an acute or chronic illness or from the slow death of dementia.

A standard of futility compatible with the goal of avoiding an unnecessarily painful or extended death would be most valuable. The test of futility could be twofold: first, an inability to arrest more than momentarily (by a few days or weeks) a downward, deteriorating course; and second, the probability, should that kind of effort be made, that a peaceful death would become increasingly unlikely. At that point, curative medical treatment has indeed become futile and ought to be stopped. The standard is thus one that looks to the possibility of sustaining life in some decent fashion, but also and simultaneously to the choices necessary for enhancing the possibility of a peaceful death.

The most difficult but impending problem of futility judgments is whether to embody them in public policy. As matters now stand, it is customary for both federal and private health care plans to provide reimbursement for the care of those in a persistent vegetative state; families and medical staffs that want medical treatment to be continued for these patients can be reimbursed for its cost. Should financial support continue in the future? I believe that, in principle, it should not. Ideally speaking, it makes no sense in light of budget restraints or humane public policy to use medical technology to sustain for an extended period the life of someone who will almost certainly never return to consciousness.

The temptation here is to adopt an either--or approach. If we consider the patient alive, then we think we should provide the patient with all those forms of health care that we would provide any other live person; or if we simply consider the patient as dead, even if not legally so, we think we should stop all care. The problem, however, is that we as a society remain uncertain about the status of patients who manage to combine, in a bewildering way, elements of both life and death. An appropriate compromise, I believe, would be to provide minimal nursing care but not the extended artificial nutrition and hydration that many institutions now routinely provide--probably because of public disagreement about the moral status of someone in that condition.

My guess is that increasingly few people will for long believe that this form of "life" merits being called human. It is a moribund life sustained by technological artifact in the face of a biological condition crying out to come to an end, as in nature it ordinarily would. Yet as long as disagreement persists, it would be unwise to stop treatment precipitately or high-handedly. That could seem to bespeak an indifference to the important convictions of some people, convictions not without some merit. But every effort should slowly be made to change those convictions so that a social consensus could build to form the basis of new policy that would refuse reimbursement for patients in that condition. A softer, perhaps more tolerable alternative would be to assign a low priority to such treatment, to help assure it would not capture resources that could be better spent on more needy patients with a chance of real recovery or amelioration of their condition.

A peaceful death should have both an individual and a public face. For the individual it can bring life to a fitting close, marked by connection to the self through reason and self-consciousness, and by connection to others through dying within the circle of human companionship and caring. But death should also have a peaceful public face. The control and management of death, understood as an unavoidable part of life, should not consume an undue share of resources, as if keeping death at bay represented society's most important goal. People should have a chance to live a healthy life, avoid premature death, and then die without that technological brinkmanship that knows no boundaries in the war against mortality.

I would define a peaceful death in a public context as a death that, on the one hand, rejected a disproportionate share of resources which, through a kind of economic violence, threatened other societal goods such as education and housing; and, on the other hand, rejected euthanasia and assisted suicide as still other forms of violence, though medical and social rather than economic.

What about family burdens as a form of quasi-domestic violence? It is not improper for people to worry about being a burden on their families or to wish they could spare them undue emotional and financial hardship. We can readily recognize the possibility of taking down with us, in a parallel destruction, those family members whose devotion--economic or emotional or both--is pressed too far. It is hard to see how a death that impoverishes a family, or destroys the later years of an elderly spouse, or wrecks the family life of a dutiful child caring for an elderly parent, can be called entirely peaceful.

At the same time, however, it is right and proper that we bear one another's illness and dying. We should not only be willing to care for others; no less important, we should allow them to care for us if there is no moral or humane way to avoid that burden. We do not need a medical system and a set of moral values that will impose upon families the drain of extended illness and death, especially when that has been brought about not by natural forces but by an excessive application of life-sustaining technologies. We should be willing to bear what nature and human mortality bring to us. But there is no reason why we should have to bear artificially extended deaths. A patient should reject them for the sake of the family's welfare after he or she is gone. And when a patient is incompetent and death on the way, family members should not be forced, through guilt or a confusion about killing and allowing to die, to believe that a termination of treatment is wrongful killing. It is not killing at all.

References

[1.] Philippe Aries, The Hour of Our Death, trans. Helen Weaver (New York: Alfred A. Knof, 1981), pp. 5-28; see also Philippe Aries, Western Attitudes Toward Death, trans. Patricia M. Ranum (Baltimore: Johns Hopkins University Press, 1974). [2.] James R. Wyngaarden, Lloyd H. Smith, and J. Claude Bennett, eds., Cecil Textbook of Medicine, 19th ed. (Philadelphia: W. B. Saunders, 1992). [3.] See Lawrence J. Schneiderman, Nancy S. Jecker, and Albert R. Jonsen, "Medical Futility: Its Meaning and Ethical Implications," Annals of Internal Medicine 112, no. 12 (1990): 949-54; John D. Lantos et al., "The Illusion of Futility, in Medical Practice," American Journal of Medicine 87 (July 1980): 81-84; Tom Tomlinson and Howard Brody, "Futility and the Ethics of Resuscitation," JAMA 264, no. 10 (1990): 1276-80; Stuart J. Youngner, "Who Defines Futility? "JAMA 260, no. 14 (1988): 2094-95. [4.] See Daniel Callahan, "Medical Futility, Medical Necessity: The Problem-Without-A-Name," Hastings Center Report 21, no. 4 (1991): 30-35.
COPYRIGHT 1993 Hastings Center
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1993 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Author:Callahan, Daniel
Publication:The Hastings Center Report
Date:Jul 1, 1993
Words:5454
Previous Article:Terra es animata: on having a life.
Next Article:AIDS: The Making of a Chronic Disease.
Topics:

Terms of use | Copyright © 2016 Farlex, Inc. | Feedback | For webmasters