To me alone there came a thought of grief:
A timely utterance gave that thought relief. . .
How has death
As the decade comes to da close, it is an opportune time to reflect on death and dying in America. As I write, Jack Kevorkian-the figure perhaps most identified with the death with dignity movement-has just been sentenced to ten to twentyfive years in a Michigan jail for second-degree murder. Although Kevorkian will almost certainly appeal his conviction, his sentencing to prison time makes it highly likely that his involvement in our nation's dialogue about death and dying is fast coming to a close. This occurrence is a milestone because Kevorkian's initial physician-assisted suicides sparked our national debate about this contentious issue.
This story could be said to have begun in June 1990, when we read that the retired pathologist had helped a 54-year-old woman with a presumptive diagnosis of Alzheimer's disease to end her life (Belkin, 1990). After playing a game of tennis and writing a note to her family explaining her actions, Janet Adkins was connected to Dr. Kevorkian's suicide machine to receive a lethal injection of medication in his now famous Volkswagen microbus.
The story seems to have ended on April 13, 1999, when Kevorkian was sentenced to ten to twentyfive years for seconddegree murder of Thomas Youk. With overwhelming media coverage, the nation watched as Kevorkian received his first conviction after three acquittals and one mistrial. As the Kevorkian chapter appears to be coming to a conclusion, it is a good time to reflect on where we have been this past decade in order to predict where we might be headed in the next.
A DECADE RETROSPECTIVE
It could be argued that we have made remarkable progress since Kevorkian's first assisted suicide. Although his actions are not responsible for these accomplishments, they did help set the stage for greater receptivity to the work of more mainstream investigators and policy makers concerned with the care that people who are dying receive. It is worth cataloguing these activities to fully appreciate the scope of our efforts over the past ten years and to predict future trends.
Medicine and the law. At least within the profession of medicine, it could be argued that the most significant event of the decade was the publication in I995 of the massive Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), finded with $28 million from the prestigious Robert Wood Johnson Foundation. The SUPPORT study found that a disproportionate number of critically ill hospitalized patients received inadequate pain relief and that their preferences regarding end-of-life care were either unknown or ignored.
In the wake of SUPPORT, it was not uncommon to read in leading newspapers that advance directives did not work, that physicians ignored pain, and that they were often unaware of their patients' end-of-life care preferences (Gilbert, I995; Colburn, I995; Winslow, I995). SUPPORTS conclusions, which were sometimes accurately described and sometimes misrepresented in the professional and lay press, helped to further a desire for the legalization of physician-assisted suicide that had begun in earnest with Timothy Quill's 1991 New England Jounal of Medicine account of how he helped his patient "Diane" end her life. Quill's mainstream reflections in the nation's leading medical journal-coupled with Kevorkian's libertarian practices-led prominent physicians and medical ethicists to propose guidelines to legally regulate this practice (Quill, Cassel, and Meier, I992; Miller and Fletcher, I993; Miller et al., 1994). Although many advocated improved palliative care as the appropriate response to these deficiencies in care (Sach et al., 1995), others read the SUPPORT results as a justification for the legalization of physicianassisted suicide. After all, if things were this bad in American hospitals, then patients must be given an ability to control the timing and manner of their deaths.
By the time the SUPPORT study was published, an ethical and legal battle about the legalization of physician-assisted suicide had been brewing for several years. In New York, Governor Mario Cuomo's Task Force on Life and the Law (I994) studied this question and concluded that a change in the law would be ill-advised public policy and imprudent. On both coasts, state laws prohibiting physician-assisted suicide had been challenged in federal courts. In I994, Judge Barbara Rothstein in Seattle ruled that if women had the right to make important intimate choices about questions such as abortion, then dying patients-invoking a comparable liberty interest-had a similar right to determine how they died (Compassion in Dying v. Washington, I994). In New York, another federal district judge disagreed and ruled that New York's ban on physician-assisted suicide was not unconstitutional (Quill v. Koppel, I994).
With this split decision, both cases were appealed to their respective Circuit Court of Appeals. An initial decision in the Ninth Circuit overturned Judge Rothstein's decision, thus upholding Washington's ban on physician-assisted suicide (Compassion in Dying v. Washington, I995). The issue, however, was so contentious that it was later heard en banc by the entire Circuit. By an eight to three margin, the Ninth Circuit decided that there was a constitutional right to physician-assisted suicide. Writing for the majority, Judge Stephen Reinhardt invoked the fourteenth Amendment and affirmed that, "A competent, terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and humane death rather than being reduced to a state of helplessness, diapered, sedated, incompetent" (WL94848, gt Cir., I996).
Meanwhile in New York, the Second Circuit Court of Appeals reversed the district court's ruling and found New York's ban on physicianassisted suicide unconstitutional. In their ruling, the judges opined that New York's ban on physician-assisted suicide violated the equal protection clause of the fourteenth Amendment. The judges argued that if terminally ill patients had the right to have life-sustaining therapies withdrawn in order to die, then patients who were not sustained by such measures were denied an equal opportunity under the law to end their lives, given the prohibition on physicianassisted suicide.
With these two Circuit decisions in placeand the state of the law in flux-the stage was set for a Supreme Court battle on this significant legal and ethical question. The Supreme Court heard the two cases together in January I997. That summer the court ruled that there was not a constitutional right to physician-assisted suicide (Vacco v. Q(uill, I997).
Coincident with this battle in the courts, several states attempted to legalize physician-assisted suicide, with Oregon being the lone state to sanction this practice, passing a referendum in November I997. Under Oregon's Death with Dignity Act, a physician could write a prescription for a lethal dose of medication if a terminally ill patient initiates a voluntary, and repeated, request for "assistance in dying" (Fins, I996). Oregon's law went into effect in I998, and early reports on it are just beginning to come into the literature (Chin et al., I999). (See Coombs Lee, this issue, page 59.)
Literature. Although I have written here about initiatives in medicine and the law, it would obviously be a mistake to see these developments as exclusively of interest to these professions. In fact, the question of how we die has consumed our popular culture recently, as evidenced by the wealth of books published on this theme during the past decade.
Early in the decade, Americans were presented with an array of books addressing whether physician-assisted suicide should be legalized. Indeed, many were stunned by the publication by the Hemlock Society of Final Exit (Humphrey, 1991), which actually provided readers with detailed instructions about how they could commit suicide, with some calling for censorship in order to protect vulnerable populations.
Although these volumes tapped into our nation's interest in the question of physician-assisted suicide, the bulk of the subsequent publications in the decade addressed the question of death and dying more broadly.
The most notable of these publications was the award-winning and best-selling How We Die (Nuland, I994). It was a volume written from the perspective of a practicing surgeon, Sherwin Nuland. With fine clinical detail and a physician's eye for nuance, he gave the reader an insider's view of the sickroom and the deathbed. In this collection of essays, Nuland graphically described death from coronary artery disease, old age, Alzheimer's disease, violence, suicide, and AIDS. Nuland did not romanticize death. Instead, he sought to demythologize it, warning us against our tendency to seek refuge in medical technology that only temporizes our inevitable mortality In this way, Nuland reflected themes found in Daniel Callahan's (1993) thoughtful and provocative Troubled Dream of Life. Callahan maintained that, try as we might, no amount of technological control can take death out of our existence or assuage our fear of death.
How We Die, though tempered by the healer's compassion, was met by other works that sought to counter the surgeon's vivid and unromantic account of death and dying. These accounts of death and dying focused on the living that can be done bv the dying. Inspirational in tone, they often featured illness narratives that gave hope to the contemplative reader worried about a stark and troubling future. Noteworthy works in this genre included the posthumously published accounts of Anatole Broyard (I992) and George Sheehan (I996) who both died of prostate cancer, as well as a film produced by Ruth Yorkin Drazen (I997) depicting the death of a young physician.
Broyard's collection of essays captured the wonder of the dying process and the possibility of being intoxicated by one's illness. Both philosophical and autobiographical, Broyard's work described the focus that can accompany a terminal illness. Sheehan's account of his own battle with prostate cancer was especially notable because it came from the retired cardiologist turned philosopher who helped to spawn the running boom of the I970S. Sheehan's description of his physical decline and concomitant spiritual rebirth was a frank-yet optimistic-acknowledgment of death's inevitability and the possibility of growth as one is dying. Drazen's film, based on a diary of a 29-year-old physician diagnosed with a metastatic cancer, was a poignant but uplifting narrative of the man's struggle to find meaning in a cruelly shortened life.
Ira Byock (I997), a hospice physician, echoed these themes of possibility and hope in his book Dying Well, which advanced the possibility of closure and a good death through the hospice experience. This theme recurred among physicians who wrote about caring for the dying, whether they were clinical investigators like Jerome Groopman (I997) or a practitioner like Peter Selwyn (I998), who specialized in Hr/AIDs and palliative care. Each sought to see the dying process as having the potential for personal growth and, to some extent, transcendence.
Other writers were not as sanguine about our prospects at the end of life. The journalist Marilyn Webb (1998) candidly explored the realities of a difficult death first exposed by the SUPPORT study in a comprehensive account of the medical, legal, ethical, and sociological forces that shape care of the dying. Using her skills as an investigative journalist, Webb recommended ways that patients and families could tactically "work" the healthcare system to improve their access to adequate pain medication, palliative care services, and the prospect of a good death.
Philanthropy, public policy, and medical education. These works addressing death and dying reflected a growing interest in end-of-life care and a need for reform that led to major philanthropic support beyond the early sponsorship of the suppoRT study by the Robert Wood Johnson Foundation. Following in the grand tradition of the Carnegie Foundation, which supported the I9Io Flexner Report that led to major reforms in medical education (Gelfand, 1997; Flexner, I984), the modern philanthropic community has supported a range of activities that future medical historians will view as having been instrumental in changing medical care of the dying in the last decade of the millennium.
In I994, the Open Society Institute initiated the Project on Death in America (I998), which sponsors grants to improve the care of the dying as well as the Faculty Scholars Program designed to support "outstanding clinicians, educators, and researchers in disseminating existing models of good care, developing new models for improving the care of the dying, and creating new approaches to the education of health professionals." In addition to this pioneering effort, the Robert Wood Johnson Foundation established its Last Acts project, a coalition of prominent professional and lay organizations which seeks to promote systemic reform of the "behavior of physicians and other health care providers, payers of care, hospitals and nursing homes, and consumers themselves "
An especially notable contribution by the philanthropic community to the care of the dying was its support on a major report of the Institute of Medicine examining this issue. With this support, a distinguished panel of experts surveyed the state of death and dying in America and articulated the normative expectation that "people with advanced, potentially fatal illness and those close to them should be able to expect and receive reliable, skillful and supportive care." To this end, the panel made wide-ranging recommendations for improvement of the status quo by addressing professional competence, pain and symptom management, financing of palliative care, reform of restrictive drug prescription laws, medical education, and research in end-of-life care, and by encouraging a public dialogue about our societal obligations to the dying and their families (Field and Cassel, I997).
The Institute of Medicine effort spawned additional blue-ribbon panels at the state level, beginning in I997. Indeed, by early I998, at least twenty states had established commissions or task forces to study end-of-life care, with at least six states-California, Colorado, Illinois, New Jersey, Tennessee, and Virginia-having their task forces established by law or a legislative resolution (Merritt et al., I998). Some of these task forces including the one convened by New York's former attorney general have already issued reports.
A major focus of many of these commissions has been the state of medical education in palliative care. As noted in the Institute of Medicine report, the clinical curriculum related to death and dying "is conspicuous mainly by its relative absence" The Institute of Medicine recommended a comprehensive response to these deficiencies that would foster in all practitioners basic competency in both the technical and humanistic dimensions of end-of-life care as well as the development of palliative care role models who could lead by example and expand the knowledge base in palliative medicine.
In making many of these recommendations, the Institute of Medicine was following the innovative and pioneering initiative of the American Board of Internal Medicine's efforts to delineate core competencies in end-of-life care for its trainees in postgraduate medical education. It is encouraging to observe that since the board undertook this project in I996, other professional organizations are making a systematic attempt to improve undergraduate, postgraduate, and continuing medical education in palliative care. Most notable among these efforts is the massive Education for Physicians on Endof-Life Care program recently launched by the American Medical Association. This initiative seeks to broaden the base of professional competence in end-of-life care by training local physician-leaders with a nationally developed curriculum so they can return to their communities and spearhead educational efforts.
DEATH, DYING, AND THE FUTURE
Reflecting on the nation's efforts to improve end-of-life care during the I99OS, it is appropriate to be optimistic about the progress that has been made. Although the summary of developments delineated here is but an outline of the decade's developments, it is clear that much has been accomplished. But even with this impressive list of achievements, I am reminded of what a European health-policy expert visiting the United States said early in this decade about the state of death and dying in America: "Americans don't die, they just underachieve."
This comment, made just as we began our national debate over the ethics of physician-assisted suicide, was humorous and easy to put aside. But it said much about our nation's profound ambivalence about death, and our desire to control it. As a visitor to our culture, he was able to see what we often fail to observe: We deny death at the same time that we are obsessed with its mastery.
As far as we have come in this past decade, I worry that this visitor's comment still rings true. Although it is true that palliative care has gained greater credence both within the medical community and among the lay public, we remain a deeply divided nation when it comes to the question of death and dying. We remain a deathdefying culture focused on individual notions of control and a deep-seated belief in the almost limitless possibilities of medical technology.
Although many of us now are more willing to accept the reality of human finitude and the limits imposed by our biology, others view the ability to control the timing and manner of one's death as a personal prerogative. These differing world views, I fear, will only become more discordant as we move into the next century because of the spectacular rise of molecular medicine and all its possibilities to stave off death. Indeed, although we seem to have made progress on the palliative care front, the rise of molecular medicine may make it increasingly difficult to forgo therapy. Work being done to manipulate telomeres responsible for the molecular basis of aging is emblematic of how the new biology will make it even more difficult to accept death. The biotech firm responsible for this innovative research is frank about its quest for at least the molecular basis of immortality. Its Web site asserts that the company "is applying its leadership position in the biology of cell aging and cell immortality to discover novel therapeutics for age-related disease"
I believe that the excitement-and furorover the cloning of Dolly, the sheep, is even more representative of the strongly held desire to cheat death, gain immortality, and exert human dominion over nature. It is thus more than coincidental that both Kevorkian and Dolly have become cultural icons during this past decade. Each of their images powerfully testifies to our human quest for control.
At the end of the decade, as we both embrace palliative care and look forward to a future ripe with molecular promise, our attitudes toward death and dying in America reveal both intimations of realitv and a striving for immortality. This tension is a healthy one and should serve us well as we attempt to reconcile the quest for both good health and the quest for a good death.
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Joseph J Fins, MD., is associate professor of medicine and associate professor of medicine in psychiatry, Weill Medical College of Cornell University; director of medical ethics, New York Presbyterian Hospital Cornell Campus; and associate for medicine, the Hastings Center, New York.…