Graves E Enck. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
Asking Samuel Johnson in 1769, when he was 60 years old, if one should “fortify” the mind against “the approach of death” would have elicited this passionate rebuff: “No, Sir, let it alone. It matters not how a man dies, but how he lives. The act of dying is not of importance, it lasts so short a time” (Boswell  1953:427). By the end of the 19th century in the United States, the same rebuff would have been appropriate. Life expectancy for a female born in 1900 was 46.3 years, and for a male it was 48.3 years (Fukuyama 2002:57). People died at home, primarily from infections, accidents, and childbirth, with death preceded by little, if any, disability, and their families paid the medical expenses (Lynn, Schuster, and Kabcenell 2000:4). One century changed everything. The maturing of the scientific method and its application in the 20th century to the environment, to public health, and to our own bodies brought us longevity, dramatic decreases in deaths from infectious diseases, and the “new reality … that most of us will die from complications of a serious chronic illness that we will ‘live with’ for years” (Lynn and Harrold 1999:2). Life expectancy for a female born in 2000 is 79.9 years, and for a male it is 74.2 years (Fukuyama 2002:57). People die in hospitals from failing hearts, malignant organs, brains destroyed by strokes, minds wandering in confused dementia, with death preceded by an average of more than 4 years of disability, and Medicare pays most of the medical expenses (Lynn et al. 2000:4).
Our language has made a partial concession to the “new reality.” The “dying act” has become the “dying process,” the new abstract noun denoting that death now requires, as The Compact Edition of the Oxford English Dictionary puts it, “a lapse of time.” We still cling to Samuel Johnson’s era when a friend or a colleague dies suddenly without discomfort or in sleep after a short illness, and we say, longingly, “If you have to go, that’s the way to go,” while knowing that dying is no longer “so short a time” for most Americans. For most of us, death will come at the end of an interval of time whose beginning is vague, whose ending is unpredictable, whose distinguishing feature will be a series of irreversible changes brought about by “the generic death-dealing laws of biology common to all organisms,” laws to which we are held “captives against our will” (Callahan 1993:164).
Time runs throughout our descriptions of disease. We call modern diseases “chronic,” after the Greek chronos, meaning “time,” or “progressive,” the forward course of events through time. Death and dying are now modified by time-laden adjectives: date-fixed dying, accelerated dying, curtailed dying, physician-assisted suicide, euthanasia, autoeuthanasia, elective death, hastened death, a planned closure, anticipatory self-destruction, preemptive suicide. Questions about time come to mind, without reflection. The surgeon calls to tell me his findings. My mother’s colon cancer, discovered too late, has escaped into the bloodstream; it is now a “systemic disease.” “How long?” I ask without thinking. “Six to eighteen months without treatment, which, if done, should not be aggressive at her age of 87.” She died six months and two weeks after that call. I saw the surgeon in a local hospital several weeks after she died and asked him how he could estimate so accurately. An older, experienced surgeon, he simply said, “You see something often enough, and you just know.”
The Dying Trajectory
Barney Glaser and Anselm Straus would have understood his words perfectly. One can only imagine how often in 6 years of hospital observations they heard similar comments from physicians and nurses caring for dying people and acting as modern futurists, developing a “fan of probable futures” (Bell 1997:81) for their patients, each vane of which had its distinctive name: “short reprieve,” “abrupt surprise,” “swift death,” “expected lingering while dying,” “suspended-sentence,” “entry-reentry.” These were names given to “dying trajectories,” as Glaser and Straus (1968) called them, staff expectations of when a patient would die projected onto a mental plane as a graph having “shape” and “duration,” like the graph of a projectile’s course.
Dying “takes place over time,” they wrote (p. 5). This imaginary lapse of time became the guiding principle for organizing daily medical work with the dying.
The “dying trajectory” has had lasting influence, gradually being transformed from a projection to a description of the course of a fatal disease, such that Dr. Kathleen Foley (1996), director of the Open Society Institute’s Project on Death in America, could say in her congressional testimony on the physician-assisted suicide debate that one of the factors driving the debate was “changes in the trajectory of dying, with large numbers of patients with cancer and AIDS alive for months and years following the diagnosis of an incurable illness” (p. 2). The Institute of Medicine (1997) uses the “dying trajectory” to “illuminate similarities and differences in patient experiences as they approach death,” identifying three “prototypical death trajectories” (pp. 28, 29).
Brief vignettes illustrate each trajectory. Trajectory A describes sudden death from accident or heart attack, as illustrated by the death of Henri J. M. Nouwen, Catholic priest and author, who wrote in 1994, at age 62, that he was not prepared to die but knew that “the ten, twenty or thirty years” he had left would pass quickly (Nouwen 1994:4). Father Nouwen suffered a sudden, fatal heart attack just 2 years later.
Trajectory B is typical for cancer, thought to have “a more predictable trajectory from the point at which cure becomes unlikely until death than other chronic diseases” (Institute of Medicine 2001:13), as illustrated by the death of former French President François Mitterand. Diagnosed under a fictitious name with prostate cancer in 1981, shortly after his election, and given 3 months to live, he served two terms as president, keeping the disease a secret for most of that time (Zhamkin 2002:2). Only near the end of his presidency did he tell Marie de Hennezel, a psychologist in a palliative care unit, “The process has begun. The illness is fatal. I know…” (quoted in Hennezel 1998:161). Heeding her reminder that he must not “start dying before death comes,” he spent the last year of his life sharing his reflections with Franz-Olivier Giesbert, published in 1998 as Dying Without God, and writing the foreword to Hennezel’s book, in which he described the “separate time” of the dying when “they discover the freedom of being true to themselves” (p. ix).
Trajectory C describes death from a long chronic disease with intermittent crises, with death resulting from one of these or from a subsequent problem, as illustrated by the following hypothetical case. Any one of us might have a heart attack at age 60, followed by years of progressive heart failure, made worse at some point by diabetes and hypertension, finally dying at 80 of a stroke and its complications (Lynn and Harrold 1999:2).
Why and Where We Die
We see examples of all three trajectories in the statistics we gather about why and where we die. The usefulness of the “dying trajectory” is as a lens through which to look at these statistics and try to construct the imaginary graph by which a human being progressed from a healthy status to death across a “lapse of time.” For each graph, we try to imagine the life activities that filled the days from diagnosis to death, if such time were available. Perhaps our own experience with a dying parent or friend, wife, lover, or colleague helps our imagination construct what neither these numbers nor the trajectories that describe them can give us. The current statistics on cause of death illustrate the changing time and shape of dying; the statistics on where we die illustrate the consequences of those changes.
In their report of final death statistics for 1999, Hoyert et al. (2001) list the 15 leading causes of death. Reading the list slowly and reflectively allows one to use one’s imagination to draw the “dying trajectory” for each cause and compare it to the “prototypes.” The percentage in parentheses following each cause here is the proportion of deaths from that cause accounted for by “older Americans,” those 65 years old and older: heart disease (83.7%), cancer (70.9%), stroke (88.8%), chronic respiratory disease (87.1%), accidents (32.9%), diabetes (75.8%), influenza and pneumonia (89.9%), Alzheimer’s disease (98.8%), kidney disease (84.3%), septicemia (80.3%), suicide (18.8%), chronic liver disease (40%), hypertension (85%), homicide (5.2%), aortic aneurysm (84%). These 15 causes accounted for 84% of the 2,391,399 American deaths in 1999. Older Americans accounted for 75.2% of all deaths in that year. The three leading causes of death—heart disease, cancer, and stroke—accounted for 60.3% of all American deaths.
Some variations in dying trajectory are known within some of these categories. Among the deaths from heart disease, 27.5% were deaths from “acute myocardial infarction,” heart attack, with half or more of the victims probably dying within an hour of the attack (Nuland 1994:17). Accidents have a “trimodal” dying trajectory: “immediate death,” death occurring within minutes; “early death,” death occurring within the first few hours; and “late death,” death occurring days or weeks after the injury (Nuland 1994:145).
The time required for dying and the shape that dying takes affect where we die. In a recent review, Hempstead (2001:1) found studies of patients’ preferences for place of dying but few systematic studies of death certificates to determine where we actually die. Her comparative review of New Jersey death certificates from 1989 and 1998 provides one indication of changing patterns: There was a decline in the proportion of deaths accounted for by hospital inpatients (from 61% to 49%) and an increase in the proportion of deaths occurring in a residence (17.8% to 24.6%) or a nursing home (8.6% to 16.4%), with important variations by age, race, county of residence, and cause of death (p. 1). For “older Americans,” in 1998, the majority of deaths among those 65 to 79 occurred in institutions (hospital inpatient, 53.02%; nursing home, 10.4%), whereas 27.8% occurred in residences. The majority of deaths among those 80 and above also occurred in institutions (hospital inpatient, 46%; nursing home, 27.7%), with 20.8% occurring in residences (p. 5).
These data support the Institute of Medicine’s (1997) profile of American dying. Three-fourths of the dying are “elderly,” most of them covered by Medicare or other government health care programs for older, disabled, or poor people. Although the proportion of people dying at home is increasing, most die in institutions, mainly in hospitals, with a smaller number dying in nursing homes. People cared for in hospice programs account for a minority of all deaths, the majority of these caused by cancer (p. 260). As a result, “death at home in the care of family has been widely superseded by an institutional, professional and technological process of dying” (p. 33).
These 20th-century changes in dying trajectory created what Dr. Sherwin Nuland (1994) of Yale University calls “the method of modern dying,” dying that occurs “in the modern hospital, where it can be hidden, cleansed of its organic blight, and finally packaged for modern burial. We can now deny the power not only of death but of nature itself” (p. xv). For a visitor to a modern hospital, writes Virginia Morris (2001), no one dies there, the handling of the body ensuring that death is concealed. When death occurs, the body is hidden from public view, wrapped in plastic, placed beneath a draped gurney disguised as an empty gurney or as a laundry cart, taken to the morgue, then to the back entrance to the hospital and taken away by undertakers in unmarked vehicles. “No one in the hospital is reminded that death occurs here, or that it occurs at all for that matter” (p. 52).
Other than cause of death, all we know about the 2,391,399 Americans who died in 1999—each now a “faceless Nobody, not a qualified Each” (Hillman 1999:38)—is that they died from the “weapons of every horseman of death” that kill and have always killed human beings: Their circulation stopped, their tissues received too little oxygen, their brain function ceased, their organs failed, their vital centers were destroyed (Nuland 1994:xviii). Beyond that, we know nothing about the “process” of any single person’s dying, for “we rarely witness the process of dying as it routinely occurs” (Morris 2001:49), and “there are few reliable accounts of the ways in which we die” (Nuland 1994:8). As Nuland (1994) notes, those who regularly see death seldom write about it, whereas “poets, essayists, chroniclers, wags and wise men often write about death, but have rarely seen it” (p. 8). Bill Moyers has recently shown us a sample of what we could know in On Our Own Terms: Moyers on Dying, a four-part series presented by the Public Broadcasting Service and sponsored by the Robert Wood Johnson Foundation. Americans for Better Care of the Dying, an organization working to improve end-of-life care, suggests that newspaper obituary writers could help by writing something about how dead persons lived during their last years or months. What did they do? What did their families do (Lynn et al. 2000:205)?
Nuland (1994:xi) provides an introduction to some of the clinical and biological events of the “lapse of time” with How We Die, his conversation with those of us who want to know what dying is like. As another reminder of the “new reality,” he tells us that fewer than one in five of us will die under such “easy circumstances” as death in an undisturbed coma, a peaceful death after a long illness, or a sudden death without discomfort (p. 142). Instead, our dying will more likely be “a messy business,” perhaps from one of the six common causes that form the core of his book: AIDS, cancer, ischemic heart disease, Alzheimer’s, accident, and stroke. Together, these accounted for 1,404,061 (59%) of U.S. deaths in 1999. His description of how these “common avenues to death” (p. xviii) kill us makes a myth of our belief in a “good death” (p. xvi), one of the many “invented symbols and stories” we use “to cope with death” (Wetz 2001:245). For Nuland, “death with dignity” is the chief mythical story, serving as a defense against confronting the biological realities that eventually disintegrate “the dying person’s humanity. I have not often seen much dignity in the process by which we die” (pp. xvi-xvii).
Death on Public Display
The “messiness” of dying is usually seen only by the dying, by their families, and by medical personnel. The public has no access to dying as it occurs, but public access to the final evidence of death is now available. Dr. Gunther von Hagens, an anatomist, has worked for more than 20 years to perfect “plastination,” a technology by which a donor’s corpse is embalmed, dissected, filled with reactive plastics, and cured into a fully plastic specimen, “frozen at a point between death and decay” (Hagens 2001:20). The specimen is protected from decay and can be displayed in many forms, including full-body demonstrations of skeletal and muscular systems, full-body demonstrations of organic systems, isolated specific organs, or slices of various organs or of the entire body. Numerous specimens of each form are being shown in an exhibition titled Body Worlds: The Anatomical Exhibition of Real Human Bodies, described by its creator as “the aesthetic and instructive presentation of the body’s interior” (p. 32).
I had the good fortune to see the exhibition at the Atlantis Gallery in London in March 2002. Here were whole-body specimens, minus the skin, shown in various poses that illustrated the various systems of the body. Here also were individual organs and cross-sectional slices of the brain and other organs. Seeing the final outcomes of Nuland’s “weapons of death” activates the imagination about how messy the final days of dying could have been. Here one sees the final state of failed organs and destroyed vital centers. Here, “finally, the supply of oxygen to the body [broke] down” and “the person who was alive a moment ago is now dead” (Wetz 2001:245).
Here is a pair of smoker’s lungs, blackened by tar, sitting on either side of an enlarged heart, swollen by increasing demands to compensate for failing lungs. The small card that accompanies the lung exhibit says that smoking 20 cigarettes a day deposits the equivalent of a coffee cup full of tar in the lungs each year, shortening life by an average of 5 years. The exhibition catalog calls smoking “suicide on the installment plan” (Whalley 2001:68). Here is the liver that while filtering the blood trapped a cancer cell whose origin was elsewhere and now is covered with mounds of metastatic cancer. This could well have been my mother’s liver, for she died of metastatic liver cancer from a cancer that began in her colon and entered her bloodstream before it was diagnosed. Here is a cross section of the brain of one who died from a stroke, the dark pool of blood preserved in the brain tissue. Here is the swollen sclerotic liver. Here is the cross section of the chest cavity with extensive tumor growth infiltrating the vertebra. Here is the opened heart showing the erosive death of the heart wall, the evidence of myocardial infarction. This could have been my heart had not a cardiologist’s skill with angioplasty prevented it. Here is the full-body plastinate of a woman in the fifth month of pregnancy, the front wall of the uterus opened to show the fetus, 6.5 inches long. Here is the reclining woman in the eighth month of pregnancy, opened to show the fetus crowding her abdominal organs. Here is the newborn child with hydrocephalus. Here is the plastinated horseman sitting astride his plastinated horse, holding his plastinated brain in one hand and the plastinated brain of his horse in the other, strikingly symbolic of Nuland’s “horseman of death.”
“Here Death is happy to rush to the aid of the living.” So reads a sign in the foyer of the Heidelberg Institute of Anatomy (Hagens 2001:34). So, also, does death rush to our aid in this exhibition. Death is on display here, democratized, presented in anonymous, skinless cadavers, preserved indefinitely. Here one sees that, “like the death of life in general, the death of the individual human being is neither mysterious nor profound. It is the end of a natural course. Admittedly, we can try to postpone this biological actuality with the aid of modern medicine and a healthy life-style, but we cannot avoid it” (Wetz 2001:245).
But postponement and avoidance are at the center of our controversies about dying. Should a person who wants to die be forced to postpone it? Can one postpone death too long and thereby lose the chance to avoid a much worse death, one with greater suffering for all concerned? Should one consider no longer postponing a current cause of death to avoid a worse one? Is it rational to choose suicide to avoid the deterioration of aging and loss of personhood? Two widely publicized cases in England, which occurred simultaneously, involving two women of the same age who died 17 days apart, represent our greatest fears about our own death. Cases like these provoke others to write about choosing the right time for one’s death. The case summaries are followed below by a review of three of those views.
The first case involved Miss B, age 43, an unidentified former social worker, paralyzed from the neck down in February 2001 by a ruptured blood vessel in her neck. She was kept alive with a ventilator, confined to a hospital bed, totally dependent on others. She insisted that she wanted to be allowed to die, a right guaranteed her by English law, a decision she was judged competent to make. The doctors in her hospital refused to remove the ventilator because it was against their medical ethics and because they thought they would be killing her, preferring instead that she try rehabilitation, even though she had little or no chance of any improvement. She sued, giving testimony as the judge sat at the foot of her bed. She won and was moved to another hospital where doctors would honor her request and honor English law. Within 3 weeks after she was moved, the ventilator was removed, and she died on April 24, 2002 (Dyer 2002b).
The second case was that of Diane Pretty, also age 43, diagnosed in 1999 with motor neuron disease. By 2001, she was also paralyzed from the neck down, unable to speak and wanting to avoid the asphyxiation that would be her inevitable death. Suicide is not a crime in England, but assisting someone with suicide is, punishable by a maximum of 14 years in prison. Because of the disease, she could not kill herself. She asked that her husband be protected from prosecution so he could help her die. The director of public prosecutions refused. She sued, appealing her case through the British courts, lost, and finally appealed to the European Court of Human Rights in Strasbourg. Her appeal was denied on April 29, 2002, 5 days after Miss B died. Diane Pretty died of asphyxiation on May 11, 2002, in the hospice that had cared for her (Dyer 2002a).
These two tragic cases illustrate the major concerns of two prominent writers on the end of life. Miss B is the prototypical nightmare for Dr. Daniel Callahan (2000), medical ethicist at the Hastings Center. He warns against the “‘technological imperative’ … the compulsive use of technology to maintain life when palliative care would be more appropriate” (p. 654). When the continued use of technology is equated with preserving the sanctity of life, the result is the very “trap” that imprisoned Miss B and her physicians (Callahan 1993:88). American patients have the right to terminate treatment at any point, but when stopping treatment is seen as an act of killing by those who stop it, then families and physicians suffer conflict and guilt, having lost sight of the fact that the disease is the cause of death and not those who decide to let it take its course (Callahan 1993:88).
Facing such a medical nightmare, Callahan (1993) cautions us against postponing one cause of death for a subsequent cause of death that could be worse. The goal he seeks and the goal we all seek is the “peaceful death” he eloquently describes (pp. 195-96), a death that can be missed through persistent technological interventions. At some point, which only the individual can decide, perhaps the “peaceful death” is found through letting a fatal disease take its course, the patient guided by a compassionate physician who can explain what such a death will entail and who will provide maximum comfort and care (pp. 198-99). For Callahan, the physician has no greater role, for physician-assisted suicide or euthanasia would break the moral rule against doctors killing and turn doctors into killers (pp. 79, 104).
Diane Pretty’s case is the prototypical nightmare for Derek Humphry, who, having helped his wife to die in 1975 to end her suffering from bone cancer, was investigated by England’s director of public prosecutions after publishing his account of her death in 1978. After moving to the United States, he became a leading advocate for physician-assisted suicide and euthanasia through founding the Hemlock Society, which he left in 1992 to found ERGO (Euthanasia Research and Guidance Organization). His views have been widely disseminated in his book Final Exit (1996). Should someone like Diane Pretty, finding herself suffering from an advanced case of incurable disease and an unacceptable quality of life, be legally permitted to get a prescription for a lethal dose of medication that she can take at her home, when she chooses, with the help she would require, and thereby end her suffering through “assisted dying”? Derek Humphry’s answer is yes. While the public policy debate about “physician-assisted suicide” (legal in the United States only in Oregon) continues,Final Exit is intended to be a guidebook to “accelerated death” through “self-deliverance” for adults who voluntarily and rationally seek to end prolonged, untreatable suffering in the last stages of an incurable disease (pp. xv-xvi). Once the decision is made, setting the time for death is a gamble. “But when is the best time? Too soon is to waste the good aspects of life, and perhaps unkind to those who love and need you. Too late means you might lose control” (p. 101).
A critical part of the debate over physician-assisted suicide concerns the complications that may occur when patients attempt such suicides. Until recently, few scientific studies had documented the clinical outcomes of such attempts (Nuland 2000:583). In its fourth annual report concerning Oregon’s Death With Dignity Act, the Oregon Department of Human Services (2002) says that of the 21 patients who took lethal medications prescribed under the act in 2001, one vomited after swallowing the medication and died 25 hours later; another patient lived 37 hours after swallowing the medication. Neither regained consciousness, and emergency services were not needed. In a recent study in the Netherlands of physicians assisting in suicide or performing euthanasia, Groenewoud et al. (2000) found among the 649 reported cases (a) 35 cases of technical problems, such as difficulty in finding a vein in which to inject the lethal drug; (b) 24 cases of complications, such as nausea or vomiting; and (c) 44 cases of problems with completion, such as the time taken to die being longer than expected or the patient not entering a coma or awakening from a coma (p. 553). In some cases, physicians’ attempts to assist suicide through prescribing or supplying lethal medications resulted in complications that led to the physicians’ helping the patients take “one or more” of the medications. In these cases, the authors state, “it is not clear at what point a physician’s assistance with suicide becomes euthanasia” (p. 555).
Groenewoud et al. recommend that physicians who choose to assist their patients with suicide or euthanasia should have the technical skills to perform both procedures, particularly knowledge of and “care in choosing doses and administering medications” (p. 556). In an editorial published with the results of Groenewoud et al.’s study, Nuland (2000) agrees: “Doctors are unprepared to end life. If this is a burden to be taken on and if the medical profession accepts it as falling within the realm of individual conscience, then thorough training in techniques must be made available” (p. 583). He commends the Royal Dutch Medical Association for recommending that physicians be present for attempted suicides or acts of euthanasia, especially given the circumstances of the patients. “Is it really possible that debilitated, terminally ill people, in physical and mental anguish, will unfailingly succeed in attempts to end their lives without medical help? Can any experienced witness to dying believe such a thing?” (p. 584).
The third view on choosing the right time to die is that of philosopher C. G. Prado (1998), for whom Callahan and Humphry represent the first two steps in a “fundamental reconception of human life” that is beginning to challenge the belief that “suicide is irrational and cowardly” (p. xiii). The emerging view is that life is not “an unrenounceable gift” but is “lived at our discretion” (p. 138) and “has a volitional terminus” (p. xiv). The first step was social acceptance of a person’s right to refuse treatment that prolongs life, the foundation of Callahan’s warning against the “technological imperative,” a step that, in the view of advocates of assisted suicide, bears no “significant difference” from the second step represented by Humphry’s quest for the national legalization of a suffering person’s right to request and receive treatment that ends life (p. 138). The third step will be the eventual social acceptance of “preemptive suicide” as a rational choice to forfeit “worthwhile life for anticipatory reasons” (p. 152). The choice of “anticipatory self-destruction” will be made by “reflective aging individuals” who “are in their late sixties or early seventies” (p. 99), free of diagnosable terminal disease, who want to avoid the anticipated “reduction of the self through age-related loss of faculties, traits, values and interests” that define them as persons (p. 112), leaving them to live and eventually to die as unacceptable “lesser” versions of themselves (p. 116). They have decided that “the persons into whom age is turning them aren’t ones they think should live” (p. 97). An example of what one would seek to avoid through preemptive suicide is the situation of a person who, when diagnosed in the early stages of senile dementia, is still capable of choosing suicide, but chooses, instead, to live and “then, for the sake of a very short time of reasonably aware life, spends a decade existing as a mindless organism requiring constant care” (p. 104, n. 4). Like Humphry, Prado notes that “timing is crucial” (p. 68). One must neither act too soon, giving up too much worthwhile life, nor wait too long, until personal losses make rational suicide impossible (pp. 85, 111, 152-53). An exact time that meets both conditions cannot be set.
Of these three, the attempt to justify physician-assisted suicide holds center stage in the United States, obscuring, Prado believes, the subtle shifts in attitude that will eventually make preemptive suicide a public issue as the number of aging Americans grows and degradations from dementia increase. His case could well be enhanced should we choose to accept medical technology’s offer of what Francis Fukuyama (2002) calls “a devil’s bargain: longer life, but with reduced mental capacity” (p. 8), the very combination that Prado (1998) calls the “anticipated diminishment of self” (p. 46).
Enhancing Care at the End of Life
Dr. Kathleen Foley (1996) believes that efforts to legalize physician-assisted suicide distract us from the greater need for improvement in care of the dying. Rather than asking how we can legally secure a lethal dose of medication, we should be asking questions about how and where we will die, who will care for us and control our pain, what options for end-of-life care we will have and how will we pay for them, who will respect our values and our cultural, religious, and spiritual beliefs (p. 1). These are questions that we should ask whether we are “living with” serious illness or “dying of” it, the division between the two having become so blurred that “the point at which dying begins is often impossible to define” (Lynn et al. 2000:5; see also Callahan 2000:655). Curative care and palliative care blend together indistinguishably. The answers to these questions should be readily available, institutionalized in a health care system that can provide services, care, and comfort throughout the “living” and “dying” experience.
These questions are particularly important in light of the World Health Organization’s (1990) definition of palliative care as “the active total care of patients whose disease is not responsive to curative treatment.” Palliative care gives priority to controlling pain and other symptoms and to meeting psychological, social, and spiritual needs in order to provide “the best quality of life for patients and their families.” Living is affirmed, and dying, neither hastened nor postponed, is regarded as “a normal process” during which the patient is helped to “live as actively as possible until death” and the family is supported throughout the patient’s illness and throughout the time of grief.
In its advocacy for these values and goals in all end-of-life care efforts, Last Acts, a national grassroots coalition devoted to improving care and caring near the end of life sponsored by the Robert Wood Johnson Foundation, appointed a Palliative Care Task Force to develop core precepts of end-of-life care. These precepts, published in a booklet called “Precepts of Palliative Care,” cover five areas: (a) respecting patient goals, preferences, and choices; (b) comprehensive caring; (c) utilizing the strengths of interdisciplinary resources; (d) acknowledging and addressing caregiver concerns; and (e) building systems and mechanisms of support (reprinted in Lynn et al. 2000:340-41). The list is too extensive for me to discuss here more than a small sample from two of the precepts, but this is sufficient to provide some idea of the problems palliative care tries to address and to describe the work of some who have and do influence that effort.
First, those giving palliative care place “a high priority on diagnosis and treatment of psychological distress” (Lynn et al. 2000:341). Glaser and Straus (1965) touched on the psychological distress of the dying when they reported the ambiguity of medical personnel about how much “awareness” the patient should have. The patient’s “awareness context” consisted of who knew what about the situation. The degree of awareness governed the interactions of medical staff with the patient. The greatest ambiguity surrounded the “open awareness context,” in which staff and patient knew the truth about the patient’s “impending death” and acted accordingly (p. 11). In such a context, time could be comforting or distressing, depending on the patient’s capacity to use it. Time could be comforting if the patient could use it to bring closure to life through personal acts of “proper dying” (p. 103). Such end-of-life activities might include writing letters, praying, reviewing life, planning the future for survivors, finishing unfinished work, and reconciling broken relationships (pp. 43, 103). Or time could be distressing if the patient could not face death, thus dying with more suffering than would have occurred if he or she had been left unaware (p. 103). Dying in psychological peace could leave the family thankful for their shared experience; dying in psychological anguish could leave the family wishing that the patient had been left unaware (p. 104).
In the fall of 1965, the same year Glaser and Straus’ Awareness of Dying was published, Dr. Elisabeth Kübler-Ross was looking for any dying patient in Billings Hospital at the University of Chicago, in response to a request from four seminary students who asked to watch her interview a dying patient as she had done once before, in 1962, while on the staff at the University of Colorado. Despite resistance and repeated denials that anyone in the hospital was “dying,” she found one dying patient who would talk in the presence of the seminary students. She then continued to find other dying patients to interview, persuading them to talk about their dying in front of her initially cautious but curious medical students. By the middle of the next year, her interviews had become weekly seminars on death and dying, beginning a career that would have profound consequences for care of the dying (Kübler-Ross 1997:139-42).
From her talks with more than 200 dying patients, Kübler-Ross identified five psychological reactions to dying. She called them “stages of dying” and listed them in sequence: “denial” that one is dying, “anger” at those who are not dying, “bargaining” with God for an escape, “depression” at realizing that escape is impossible, and “acceptance” in a quiet contemplation of the end of life. After the publication of On Death and Dying (1969), the “stages of dying” became so well-known that today they “roll trippingly off the tongue of anyone in America familiar with the contemporary Western view of mental health” (Singh 1998:168). On Death and Dying was the early forerunner of what we know as “palliative care”—an attempt to focus terminal care “on the patient as a human being,” keeping the focus on the patient’s experiences, needs, and reactions, to learn from the patient the hospital’s “strengths and weaknesses” in caring for the dying (p. xi).
Although subsequent investigations have demonstrated that patients do not exhibit the reactions Kübler-Ross described in a commonly prescribed order, the continuing legacy of her work has been the public’s first glimpse of a dying person’s “overwhelming feeling of loss on all levels of experience” that comes with acknowledging the loss of life and the end of all hopes for the future (Lynn and Harrold 1999:17, 19; Kübler-Ross 1997:132). Kübler-Ross made dying a legitimate research topic for subsequent researchers such as Dr. Kathleen Dowling Singh, psychologist and psychospiritual counselor, who credits her with opening the way for Singh’s investigation of the “nearing death experience” among hospice patients, a time of spiritual transformation during which the dying person moves from “a sense of perceived tragedy to a sense of perceived grace” (Singh 1998:15). The “chaotic” stage of the experience, incorporating Kübler-Ross’s stages of dying, is superseded by alternating experiences of “surrender” and “transcendence,” culminating in the “qualities of grace” present in dying.
The definition of patient distress has gone far beyond Kübler-Ross’s work, as illustrated by the comprehensive survey of barriers to and opportunities for palliative care jointly sponsored by the Institute on Medicine and the National Research Council, published as Improving Palliative Care for Cancer (Institute of Medicine 2001). The underlying belief of this volume’s editors and contributors is that “death is inevitable, but severe suffering is not” (p. x). Suffering is now an all-encompassing term applied to all facets of distress—physical, psychological, social, and spiritual—for both the patient and the patient’s family. Contemporary care for the dying falls short of the goal of providing total care in these areas, not because such a system of care is deteriorating under economic pressures, but because in many cases such a system of comprehensive end-of-life care has yet to be developed (Lynn et al. 2000:11). Recognition of these shortcomings has led to current efforts by various medical specialty societies to develop common core principles of end-of-life care, accompanied by guidelines for clinical practice in each area of patient and family need (Cassel and Foley 1999). These efforts among medical specialties must be complemented by a more aggressive role in legislation and funding initiatives for end-of-life care by the federal government than has occurred thus far (Institute of Medicine 2001:49-50).
A second precept of palliative care is that those providing such care identify with and honor “the preferences of the patient and family” (Lynn et al. 2000:341). One major medical study has shown how difficult it may be to bring physicians to the point of honoring patient preferences at the end of life. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments, or SUPPORT, part of a $29 million project funded by the Robert Wood Johnson Foundation, is considered to be “the most influential phenomenon in moving end-of-life care in the 1990’s,” reflecting the growing concern, shared by Daniel Callahan, over the use of all available technological means “to extend briefly the lives of people with untreatable, soon fatal conditions” (Institute of Medicine 2001:37-38).
The SUPPORT researchers speculated that the communication of patients’ end-of-life preferences to their doctors by a trained medical professional who understood the preferences of patients and the concerns of doctors would improve decision making at the end of life, resulting in physicians’ honoring their patients’ preferences to avoid painfully prolonged, “mechanically supported” dying (SUPPORT 1995:1591). The two-phase study examined five outcomes of patient care at the end of life: physician understanding of patient preferences, pain control, frequency and timing of the writing of do-not-resuscitate orders, the number of days spent before death in an intensive care unit or in a coma or receiving mechanical ventilation, and use of hospital resources (p. 1592). During Phase I, which lasted 2 years, the researchers observed the care of 4,301 patients with life-threatening diagnoses in five teaching hospitals in the United States to establish the characteristics of “usual medical care” (p. 1594). They noted deficiencies in all five characteristics of hospital dying, among them the following: Less than half of the physicians knew their patients’ preferences to avoid cardiopulmonary resuscitation; of those who were aware, 46% waited until the last 2 days of their patients’ lives to write do-not-resuscitate orders (p. 1594)
In Phase II, which also lasted 2 years, the researchers randomly assigned 4,804 seriously ill patients to either an intervention group or a control group. The patients in the intervention group had their preferences for each outcome and their prognoses communicated to their physicians by a specially trained nurse who talked with patients, patients’ families, and physicians to ensure that the patients’ wishes were known in advance. The patients in the control group received “usual medical care.” The intervention failed to improve either patient care or patient outcomes over those resulting from “usual medical care” (p. 1591).
The results left the SUPPORT researchers—and us—”with a troubling situation. The picture we describe of the care of seriously ill or dying persons is not attractive” (p. 1597). Improved communication did not bring about the desired dying experience, in which the pain of the dying was controlled, patients and their families were included in discussions of end-of-life care, and dying was not prolonged against patients’ wishes. The researchers concluded that, among other steps, “more proactive and forceful attempts at change” will be needed to reach these goals (p. 1597).
Dying in the 21st Century
Concurrent with the publication of the support findings, the Institute of Medicine appointed the 12-member Committee on Care at the End of Life in late 1995 to study a range of topics related to end-of-life care and to recommend changes to improve the care of the dying. The committee, acknowledging that “evidence and experience both indicate that much dying is far harder than it should be” (Institute of Medicine 1997:259), made seven recommendations for improving care at the end of life (pp. 266-71), noting that implementing them would require the institutions and people who make decisions about the care of the dying to change their “attitudes, policies, and actions” (p. 271).
If these recommendations are followed, what kind of care at the end of life will my grandchildren, now ages 4, 3, and less than 1 week, receive in the last quarter of the 21st century should they live to their full life expectancy and be dying of chronic or progressive fatal diseases? In contrast to my likelihood of dying in a fragmented “system” of curative care dominated, as Callahan (1993) has said, by the “technological imperative” and the view of death as “medical failure” (p. 63), my grandchildren will be cared for in a comprehensive and integrated system of palliative care staffed by multidisciplinary teams of health professionals trained in the latest scientific knowledge about dying and committed to providing “reliable, skillful and supportive care” through the use of all available resources “to prevent and relieve pain and other symptoms” (Institute of Medicine 1997:267).
Now among the dying “elderly,” my grandchildren are the beneficiaries of systemic reforms in professional training, medical research, and public policy that define the professional and institutional characteristics of their care. Beginning in undergraduate preparation, all health professionals who care for the dying now receive education that emphasizes “the relevant attitudes, knowledge and skills to care well for dying patients,” a reform made possible, in part, by the corresponding emphasis that federal research agencies and academic medical centers place on “strengthening the knowledge base for end-of-life care” (pp. 268-69). Because of these reforms in training and research, palliative care is a separate medical specialty with its own “area of expertise, education and research” (p. 269).
These developments are complemented by reforms in public policy reflecting the coordinated efforts of policy makers, consumer groups, patients, providers of health care, and researchers working in various specialties. Their efforts changed the institutional context of dying by creating reliable ways to measure the outcomes of palliative care, developing ways to hold organizations that care for the dying accountable for the care they provide, devising new ways to finance “coordinated systems of excellent care,” and changing the laws, regulations, and medical board policies that had hindered the use of the full range of opioids to relieve pain and suffering (p. 267).
These remarkable changes, which we can hardly imagine, came about first and foremost because Americans accepted the responsibility that the Institute of Medicine believes is primarily ours: to keep “the public discussion going” about “the goal of improving care for those approaching death and overcoming the barriers to achieving that goal” (p. 270). In accepting this responsibility, Americans confronted and overcame two national deficits in dealing with death: “This nation has not yet learned how to talk realistically but comfortably about the end of life nor has it learned how to value the period of dying as it is now experienced by most people” (p. 265). Throughout the 21st century, through continual discussions, citizens learned about dying in the “new reality.” They talked about the dying people in their communities and about their families, reviewed the options available to the dying, and kept the obligations they had to their fellow citizens to do whatever they could to “make it possible for most people to die free from avoidable distress and to find the peace or meaning that is significant to them” (p. 270). Their commitment to these goals, complemented by the availability and affordability of effective palliative care, means that my dying grandchildren have a range of choices far beyond our current “limited choice between suicide or continued suffering” (p. 271).
Thinking about the future of my grandchildren or your grandchildren highlights the stake we all have in correcting the unacceptable conditions of the “new reality” we inherited from the 20th century. Our “probable future” is to die as “older” people from chronic diseases. As the “horseman of death” approaches and our sufferings intensify, we will need palliative care from a health care system that is unprepared to care for us. If we want and expect better end-of-life care for ourselves and for our loved ones, we must take advantage of what Dr. Joanne Lynn, physician and director of the RAND Center to Improve Care of the Dying, calls “an unprecedented opportunity to improve [the] system, to make a difference in how people die.” If we do not respond, “we will find ourselves dying in the very system we allowed to drift” (Lynn et al. 2000:10).
Creating an alternative to dying in a system “adrift” begins with our finding the time and the interest to learn about dying in our own communities. How do our fellow citizens experience dying in our local health care systems? What do our local health care systems do to provide comprehensive and coordinated end-of-life care? What can we do and what should we do to encourage and support improvements in the care of the dying in our communities? Having answered these and other questions, we must then attempt to enlist the energies of others in our communities in pursuing the common goal of available palliative care for everyone, conscious of our common stake in avoiding unnecessary suffering. Perhaps we could begin on a small scale by organizing study groups to read and discuss “The Agitator’s Guide: Twelve Steps to Get Your Community Talking About Dying,” published by Americans for Better Care of the Dying (reprinted in Lynn et al. 2000:205-6).
Educating ourselves about dying in our local communities, however, is only the primer for the more extensive and more difficult effort we must make to educate ourselves about and to activate ourselves to eradicate the inequities in our national health care system that result in unnecessary burdens of chronic disease and suffering for many Americans, particularly for the poor of all races, members of racial and ethnic minority groups, and the medically underserved and uninsured. Cancer, the “‘prototypical’ disease for organizing end of life care” (Institute of Medicine 2001:13), provides an excellent example of the need for such an effort. Cancer is expected to become the leading cause of death in the 21st century (Institute of Medicine 1999:1), an expectation that carries ominous implications for minorities and the uninsured. The “unequal burden” of this disease is already known, for “individuals of all ethnic backgrounds who are poor, lack health insurance, or otherwise have inadequate access to high-quality cancer care typically experience higher cancer incidence and mortality rates and low rates of survival from cancer” (Institute of Medicine 1999:2). One explanation is found among the roughly 30 million uninsured working-age adults for whom the “less frequent or no use of cancer screening tests” results “in delayed diagnosis and premature mortality for cancer patients” (Institute of Medicine 2002:4).
Many of us—including, perhaps, the authors and readers of the chapters in this volume—probably medically insured and quite certainly socialized in a society where “the desire to evade and avoid the events associated with death” is pervasive (Institute of Medicine 2001:33), may initially find realistic discussions of dying and the unequal burden of suffering and premature death borne by many our fellow citizens uncomfortable. Our desire for a humane system of care at the end of life for ourselves, our children, and our grandchildren, however, is inseparable from our efforts to create a humane and just health care system for all Americans, one free of the “unequal burdens” of suffering and dying and one that provides all dying people and their families “the right care at the right time in the right way” (Institute of Medicine 1997:271). Surely we have the wisdom and knowledge to guide us. We need only have the courage to follow Goethe’s injunction, selected by the Institute of Medicine’s Committee on the Consequences of Uninsurance for the frontispiece of its 2002 publication Care Without Coverage: “Knowing is not enough; we must apply. Willing is not enough; we must do” (p. iii). The Handbook of Death and Dying that is published early in the 22nd century will record what we did.