versial, and so troubling to both the medical and the lay communities. (Callahan D: ... general attitude was, "People die-they always have and always will. Why do you Americans make such an issue of it?" ... As the 20th century advanced, death was moved from ..... cine, Cecil'sand Harrison's, perfectly reflect this ambiva-.
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Frustrated Mastery The Cultural Context of Death in America DANIEL CALLAHAN, PhD, Briarcliff Manor, New York
The care of dying patients as a problem in the United States cannot be well understood apart from understanding the way in which American culture has responded to the problem of death. This country seems unusual among developed countries in its passion to conquer death, often acting as if death were simply one more disease to be overcome. American medicine has been influenced by this background culture, while adding some idiosyncratic features of its own. A powerful attraction to technology, a fear of malpractice litigation, and a fundamental ambivalence about the response physicians should have to death help to explain why the care of dying patients has been so difficult, so controversial, and so troubling to both the medical and the lay communities. (Callahan D: Frustrated mastery-The cultural context of death in America, In Caring for Patients at the End of Life [Special Issue]. West j Med 1995; 163:226-230) riting about death in the United States some years ago, the late historian Arnold Toynbee wryly observed that "death is un-American, an affront to every citizen's inalienable right to life, liberty, and the pursuit of happiness."'"3Pl" Toynbee has hardly been alone in his judgment that Americans seem to have a peculiar attitude toward death. Foreign medical visitors to our country have long spoken with amusement of the apparent belief of many Americans that death is just one more disease to be conquered, a tenacious but not invincible foe. Not too long before his own death, as if to confirm such observations, our late and great physician essayist Lewis Thomas could speak confidently about the imminent and final conquest of all disease. The British writers Jessica Mitford and Evelyn Waugh had a great deal of fun in the 1960s taking apart the American funeral industry, with its devotion to prettifying the dead body for public display. During a recent visit to a Central European country, I was stunned by the medical insouciance toward dying. The general attitude was, "People die-they always have and always will. Why do you Americans make such an issue of it?" The issue, of course, was people like me, a naive American who had come to think that every country must now have a great struggle over the clinical, legal, and moral problems of caring for the dying. Not necessarily and, in many places, not at all. Why is it that we have had such paroxysms about this, and why has it gone on for so long, at least since the middle of the 1960s? What is there about our American culture that makes our response to death and dying seem so strange to others, and how has that culture affected the medical response to human mortality? It is not the other countries that need explanation. W
It is ours. In this essay, I want to say something about the history of the question of death in America, the cultural patterns that have developed over the years, and the way in which those patterns work together with medical practices and values to produce many of the problems we now have in the care of the dying. From the Sacred to the Secular For the early American Puritans in the 17th century, death was a religious and family event. Funerals were simple and austere, private, and unaccompanied by church ritual, and the deaths they marked were taken as the act of a stern and demanding God. Excessive mourning, considered a judgment on God, was discouraged, and the predominant symbol on tombstones was that of the skull and crossbones.2 The history of death in America from that time forward can be characterized as a movement from the sacred to the secular, from the private to the institutional, and from the natural to the artifactual.3 In the 18th century, the body was given a new dignity. Funerals were held in churches and not just at the grave, as with the Puritans; the virtues of the deceased were eulogized; and the face of a winged cherub replaced that of the skull and crossbones. Puritan austerity gradually gave way to a lushness of mourning and religious ritual. But that phase soon passed, and by the early 19th century, a gradual secularization of death could be observed, with a heavy emphasis on bereavement, a blurring of the line between the living and the dead, more lavish funerals, and a focus on nature, not God, as the cause of death. It is disease that brings about death, not original sin."P"26) As the 20th century advanced, death was moved from the home to institutions, either hospitals or nursing
From The Hastings Center, Briarcliff Manor, New York. Reprint requests to Daniel Callahan, PhD, The Hastings Center, 255 Elm Rd, Briarcliff Manor, NY 10510.
WJM, September 1995-Vol 163, No. 3 Wl homes. Taken from the hands of family members, it was put under the care of professionals. The emergent funeral industry worked hand in hand with that trend, serving to relieve the family of the practical and emotional burdens of death and to put a greater distance between the living and the dead. By the end of the 20th century, the distance has been even further increased by the rising prevalence of the memorial service, the dead body already gone by the time people gather to remember the deceased. What a British author in 1899 called the "dying of death"-"the practical disappearance of the thought of death as an influence on practical life"-continues apace a century later.5 "Death," he also wrote, "is regarded no longer as a king of terror, but rather as a kindly nurse who puts us to bed when our day's work is done. The fear of death is being replaced by the joy of life.""PI' If this rosy picture seems to clash with a common view that people are now terrorized by the possibility of an extended, undignified dying, consider a relatively recent Gallup Poll. It found that most Americans claim they almost never think of death or think of it only occasionally.' Although we may well doubt that Americans are as indifferent to death as they say they are, the perennial research optimism about the pending conquest of lethal disease may have something to do with these attitudes. The seeming conquest of infectious disease by the 1960s helped to fuel the war on other fatal diseases that became a hallmark of the medical research enterprise. A number of thinkers in the late 19th century had come to see death as an idealized natural event and looked forward to a painless death in the near future.7PP-I0l But by the late 20th century, the language of a "natural death" came to seem quaint. Nature, many seem to think, is not kindly and requires strong medical intervention to improve the process of dying. The practice of medicine, moreover, has come to treat death as a kind of accident, a contingent event that greater prevention, improved technology, and further research could do away with. Who says people have to die of heart disease, or cancer, or Alzheimer's disease? Only congenital pessimists. The latest stage of the American story of death might be termed that of the "managed death," a phrase that began appearing in the popular press only in the past decade, but that had deeper roots in western culture. The German philosopher Friedrich Nietzsche at the end of the 19th century voiced an aspiration that now has a highly contemporary ring to iePP535' To die proudly when it is no longer possible to live proudly. Death freely chosen, death at the right time, brightly and cheerfully accomplished amid children and witnesses.... From love of life, one should desire a different death: free, conscious, without accident, without ambush.
But it was not in Germany that this idea was most enthusiastically taken up. It was the United States (together with The Netherlands) that embraced this, and then only much later. We tend in this country to think that just about all of life's problems can be reduced to the management level, and we have long put self-determination and freedom at the top of our list of moral and political values.
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The idea of a managed death, catching perfectly the American spirit, has taken two forms. In its most benign manifestation, it has taken the form of a desire to terminate treatment at just that moment when further treatment will be futile and when a quiet death is still possible.* In its more radical, controversial manifestation, it has provided the rationale for the euthanasia and physicianassisted suicide movement, which aims to put death under the full control of patients. The late theologian Joseph Fletcher, in his 1956 book Medicine and Morals, was wholly American when he argued, a few decades ahead of his time, that medicine has a dual possibility, both of them transcending the traditional cure of illness: that of allowing us to dominate and manipulate human nature, and that of giving us new choices about the living of our lives.9 For him, euthanasia was the ultimate choice that every person should have, the final triumph of the human will over death. Now-since the writings of Timothy Quill and other supporters of physician-assisted suicide-the freely chosen, managed death is romanticized: a death that is fully under the patient's control, beautifully orchestrated to allow a final flourishing of familial love and reconciliatory leave-taking.'0 Ironically, death is thus brought back into the home and into the family, where it once was, but now under the aegis of secular self-determination, not under the eye of the fierce and judging God of the Puritans. Nature does not yet provide us with an acceptable "natural" death. It does not measure up to the highest standards of accommodation to our proclaimed right of self-determination or our penchant for dominating control. Thus, it must be tidied up, and how better to manage that than through physician-assisted suicide? I do not count myself among the enthusiasts of that way of coping with the failures of nature to do our bidding, but it is a social force of gathering strength.
Death and American Medicine American medicine has never been as free of the cultural influences of society as seems to be the case in many other countries. To be sure, American medicine as an institution has had its own independent internal life, full of customs, values, and practices bequeathed it from the Hippocratic tradition. But from the days of Benjamin Rush, it has also shown itself unusually open and susceptible to the broader values (and fads) of American culture. The long and fierce physician defense of fee-for-service medicine that kept America from a system of universal health care at a time when every European country was adopting one mirrored a society that has long had a special love of the market as an economic institution, The acceptance of patient rights and a repudiation of the grossest forms of paternalism mirrored a society that readily and pervasively talks the language of individual rights. The belief that, if there are tragic dilemmas in the provision of health care, they are few and far between, and that the real answer to our present crisis lies in greater efficiency and *See also N. Jecker, PhD, "Medical Futility and Care of Dying Patients:' on pages 287-291 of this issue.
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improved quality of services, mirrors a society that often looks to business practices for guidance on the deepest of human matters. American medicine, embedded in this culture, has approached death with a peculiar, highly idiosyncratic set of values and presuppositions. It seems to blend together the influences of the surrounding society and the peculiar internal traits that set it apart from the medicine practiced in most other countries. The first sign of trouble for this combination was the movement, beginning in the late 1960s, to make institutional death a more tolerable, humane event, a response to the institutional dying that developed after World War II. With exceptional fervor, American medicine had seized on the technologic advances of the 1950s and 1960s to save and extend the lives of patients. Hospitals in particular became the arena for the battle against death: respiratory intensive care units and a steadily expanding array of diagnostic devices were the weapons of choice in this battle. Before long, however, complaints began to be expressed about technologic obsessiveness, an unwillingness to let nature take its course, and the impersonality, even unwitting cruelty, of death in a technologic cocoon. High on the list of complaints was the disappearance of physicians from the bedside of the dying, as if their work was done once a patient was on a downward course, the final stage of life to be left in the hands of nurses. The suspicion was quick to arise that physicians were, if anything, more fearful of death than laypeople.
Three Reforms The responses to this situation were relatively quick in coming. The advance directive movement, beginning with "living will" legislation in the early 1970s, was one response, aiming to give patients more control over their dying, and particularly the right and the power to have treatment terminated. The hospice movement was another. Imported from Great Britain, it got its start in this country around the same time, aiming to create a different institutional milieu for the care of dying patients and to develop a cadre of people especially trained to provide good palliative care and empathic counseling to the dying and their families. The initiation of courses or segments of courses in medical schools on improved doctor-patient communication and on the moral and clinical problems of terminal care was still another response. Taken together, these three initiatives promised, by the late 1970s, to take care of the challenges posed by dying patients. Yet, as we look back on the high hopes invested in those reforms, a restrained judgment on their success seems in order. They have all made a contribution to solving the problems, but the problems nonetheless persist. In addition to their inability to sign up any more than 15% of the American public, a body of evidence is beginning to accumulate that advance directives make little difference either in the way patients are treated at the end of their lives or (as some had hoped) in reducing the cost of care in the process." The hospice movement, covered by Medicare in the mid-1980s, has gradually grown, proba-
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bly encompassing 20% of deaths in this country. But it has had considerable trouble extending its philosophy and methods beyond the care of cancer patients, although vigorous efforts to do so are now underway. The educational reforms have introduced some new topics into the medical school curriculum, primarily in the didactic courses, but they have not become equally prominent in the clinical phase of physician training. Meanwhile, as those reforms have produced less than the hoped-for changes, a steady stream of court cases, now stretching back to the Karen Ann Quinlan case in 1976, shows no sign of abating."2 Time and again, families are still forced to go to court to have treatment on a dying relative stopped in the face of medical opposition. A more recent twist, however, has been the opposition of medical staffs to what they judge to be unreasonable patient or family demands for futile or exceedingly marginal benefits. The "futility" debate, initially focused on treatment judged useless or undesirable by patients, has now expanded to include treatment judged useless or inappropriate by physicians.'3 Yet, only in America are these extended and elaborate debates, full of moral heat and philosophical and legal nuance, taking place in any striking way. I am reminded here of a comment made to me by a visiting Swedish physician at the time of the Quinlan case. That kind of a case could not have arisen in his country, he said, for four reasons. First, there would have been no thought whatever that families should have the right to make decisions about stopping treatment, as the Quinlans were demanding. Second, the issue would never have been taken to court because the courts are not used to solving moral problems in medicine; that is the exclusive domain of physicians. Third, the media would never have heard of the case because such matters were dealt with behind closed doors. Fourth, as a clincher, in his country people tended to agree on most things, and there would not have been a dispute anyway about appropriate treatment. Although that story is some 20 years old now, time and again I hear the equivalent in European countries, those same countries that wonder what all the fuss is about here. If the various reform movements to improve dying in America have not lived up to the high expectations invested in them, they remain a kind of talisman for many Americans, full of faith that there is an educational, legal, or institutional fix for our problems if only we would apply them. This might only be a matter for the kind of amusement expressed by foreign observers did it not, I suspect, hide a more pervasive unwillingness on the part of many Americans to look death in the face, as if death can be made just one more choice-and-efficiency issue, to be domesticated along with traffic jams and other excesses of modern life.
Reticence About Death The meaning of death in human life, the appropriate human response to death, and the place of ritual and communal bonds in the face of death are not easy topics for Americans to talk about. Our pluralism and individual-
WJM, September 1995-Vol 163, No. 3 ism, rightly or wrongly (and maybe a little of both), get in the way. Those matters are relegated to the privacy of religious beliefs (though the churches actually seem rarely to speak of them) or, in their absence, whatever personal resources people can bring to them on their own. There is no sustaining or supportive general culture for grappling with the human reality and importance of death. It is a kind of unspeakable problem, often covered over with much discussion of "death with dignity," which has come to focus on the control, not the meaning, of death. American medicine's response to these elements in the culture-particularly its tendency to run from deathis further compounded by a number of features of our health care system that enormously bias the system in favor of aggressive treatment of the critically ill and dying. Whereas clinicians have always been forced to accept death, however slowly and reluctantly, no such acquiescence exists among researchers. The National Institutes of Health carries out an unrelenting struggle against death, and for decades, the research budgets and priorities have given the primary place to those diseases that can cause death: cancer, heart disease and stroke, diabetes mellitus, and most recently, the acquired immunodeficiency syndrome (AIDS). Diseases that reduce or destroy the quality of life-deafness, blindness, the dementias, arthritis, osteoporosis, schizophrenia, and depression, for instance-receive considerably less research support. This situation creates a kind of fundamental rending of the psyche of the medical community: a fresh struggle to find ways for clinicians to better come to terms with death constantly battles a research emphasis that acts as if those diseases that cause death are all capable of being eradicated-in effect, that death itself is a kind of accident, perhaps itself a disease that can be done away with by eliminating its biologic causes. It would sound silly for anyone to say something like that openly, but that is the logic of the research enterprise. But that logic, where death remains a constant enemy, is at war with the new clinical logic that would see death as a part of life, to be accepted gracefully at some point. Inevitably, that research attitude spills over into clinical practice, where it is commonly thought-if not rationally defended-that many deaths, perhaps most, could be averted if only there were better preventive medicine, better individual health behavior, better screening, better care, or-all else failing-better and more research. Is death a friend or an enemy, to be acquiesced to or to be fought? American medicine is simply not sure about the answer to that question. Two major textbooks of medicine, Cecil's and Harrison's, perfectly reflect this ambivalence.'4"15 Though filled with descriptions of, and treatment strategies for, the full panoply of fatal diseases, the word death itself is scanted, the care of the dying sequestered to special sections, and the emphasis placed almost wholly on restoring health, not the routine medical care of the dying. Both books seem to have overlooked the fact that everyone eventually dies, and of some disease dealt with in those textbooks.
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The fundamental schism at the heart of American medicine is compounded by a number of troublesome features of the health care system. It is a system filled with incentives for aggressive treatment, pushing the envelope of continued life as far as is possible. The highly technologic and technocratic training of American physicians helps to set the stage, giving a high place to action and technologic persistence. The starting and continuance of treatment are emphasized, not its termination. The attitudes instilled by that kind of training are then reinforced by a malpractice litigation environment that leaves most physicians feeling at risk of a lawsuit should they not provide a "full-court (that is, technologic) press" to their patients. A fear of doing wrong, or of making a mistake, often overshadows a desire to do good and a willingness to take some chances. Finally, at least until recently, the system of fee-forservice medicine, combined with third-party payment for health care, often provided a powerful economic motive for continued treatment. The bias of third-party payment toward the wielding of specialized, normally technologic skills only exacerbated that tendency. The combination, then, of training, malpractice fears, and financial incentives all push in one direction, toward more treatment, not the abatement of treatment. Whether the powerful surge to managed care, the press for cost control, and the continuing agitation to reduce the cost of terminal care can change this bias remains to be seen. An Open Wound I cannot claim that I have found the bottom of the mystery of why American culture and American medicine seem to have a set of attitudes, values, and practices not only at variance with most other countries and cultures, but also of a kind that seems to work so badly and so disjointedly for us. If one could say that, yes, our values and practices are a little odd, but they work nicely for us, thank you, then the whole matter could be put aside. But they do not work well for us. The care of the dying has remained a kind of open moral wound in our health care system, bedeviling us for decades now, full of hopeful initiatives that do not quite work out, court cases that only give way to further cases, and moral solutions that seem to require still further moral solutions to clear up the problems created by the earlier ones. If the roots of our national problem with the care of the dying lie deeply within the American character, then we have a long and hard struggle before us, not easily amenable to the kind of legal and administrative manipulation we seem to depend on to get us out of our difficulties. As Michael Ignatieff ("Modem Dying," The New Republic, December 26, 1988, p 32) has perceptively written: Cultures that live by the values of self-realization and self-mastery are not especially good at dying, at submitting to those experiences where freedom ends and biological fate begins. Why should they be? Their strong side is Promethean ambition: the defiance and transcendence of fate, material, and social limit. Their weak side is submitting to the inevitable.
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The secularization of death in America, replacing a religious with a medical response, is a major part of our national weakness in submitting to the inevitable. Yet, if that medical response could somehow find a way to get over its reticence about talking about death and no less get over its view of death as somehow the ultimate enemy, it would be in a better position to develop those attitudes and practices necessary to help everyone die as good a death as humanly possible. But American medicine cannot achieve that goal alone. That will require a shift in American culture itself. Is that possible? Yes. The combination of financial pressure, a broad-based concern about how we die in this country, and at least some growing resistance to a technologic solution to death all set the stage for a shift. Only time will show whether it can actually take place. REFERENCES 1. Quoted in Rumford L: The human prospect, In Interpretations and Forecasts: 1922-1972. New York, NY, Harcourt Brace Jovanovich, 1973 2. Stannard D: The Puritan Way of Death. New York, NY, Oxford University Press, 1977
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3. Levak ML: From puritans to cryonics-The changing American attitudes toward life and death, In Rundle JV (Ed): Perspectives on Death and Dying. Conn Scholar 1979; 2:10-22 4. Stephenson J: Death, Grief, and Mourning-Individual and Social Realities. New York, NY, The Free Press, 1985 5. Farrell JJ: Inventing the American Way of Death, 1830-1920. Philadelphia, Pa, Temple University Press, 1980 6. Gallup G, Newport F: Mirror of America: Fear of dying. Gallup Poll Monthly 1991; 304:51-59 7. Cole TR: The Journey of Life: A Cultural History of Aging in America. New York, NY, Cambridge University Press, 1992 8. Nietzsche F: Morality for physicians-Twilight of the Idols, In Kaufmann W (Ed and Trans): The Portable Nietzsche. New York, NY, Viking Press, 1966, pp 463-563 9. Fletcher J: Medicine and Morals. Boston, Mass, Beacon Press, 1954 10. Quill T: Death and Dignity-Making Choices and Taking Charge. New York, NY, WW Norton, 1993 11. Teno JM, Lynn J, Phillips RS, et al: Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators-Study to Understand Prognoses and Preferences. J Clin Ethics 1994; 5:23-30 12. Colen BD: Karen Ann Quinlan: Dying the the Age of Eternal Life. New York, NY, Nash Publishing, 1976 13. Jecker NS: Medical futility and care of dying patients, In Caring for Patients at the End of Life [Special Issue]. West J Med 1995; 163:287-291 14. Wyngaarden JB, Smith LH Jr (Eds): Cecil Textbook of Medicine, 18th edition. Philadelphia, Pa, WB Saunders, 1988 15. Wilson JD, Braunwald E, Isselbacher KJ, et al (Eds): Harrison's Principles of Internal Medicine, 13th edition. New York, NY, McGraw-Hill, 1994
