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Grave concerns
Washington Monthly, Jan-Feb, 2003 by Shannon Brownlee
DEATH IS THAT MAN TAKING NAMES by Robert A. Burt University of California Press, $29.95
IN 1989, THE ROBERT WOOD Johnson Foundation funded a five-year, $30 million study of how dying patients and their caretakers make decisions about end-of-life care. The goal of the SUPPORT trial (for Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) was to address the growing national concern over the loss of control that patients experience as death approaches, and to find ways to reduce the number of Americans who suffer prolonged and painful deaths. The first phase of the study, which ultimately included 9,000 patients, simply looked at how well hospitals and caregivers observed DNR, or "do not resuscitate," orders; provided pain-killers; and shared with patients and families decisions concerning such life-prolonging treatments as feeding tubes and mechanical ventilators. This phase of SUPPORT found that physicians often didn't have a clue as to what families and patients wanted; DNR orders were often written only in the last few days of life; and more than half of patients died in substantial pain.
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These results seemed at the time to confirm the widely held view that medicine and its practitioners had lost their humanity, and that doctors were abandoning the patients who needed compassion the most. But the subsequent phase of the study called that conclusion into question. Here, dying patients entering the hospital were randomly assigned to one of two groups. The first group received intensive intervention from specially trained nurses, who counseled families and patients about prognoses and medical options and informed doctors day by day about the families' desires regarding life-prolonging treatment and the patients' level of pain. The other group received no intervention, but their interactions with caregivers were monitored. The results of this clinical comparison, writes author Robert Burt, were "stunning: The intensive intervention changed almost nothing ... The most intensive mechanisms to promote rational decision-making based on accurate prognoses and to actively elicit patient choices to guide professional treatment ... had zero [his emphasis] impact on the provision of end-of-life medical care."
It would be easy to conclude that the SUPPORT procedures failed because of the willful and callous disregard of doctors. Indeed, that was how the American Medical Association--a group not generally given to doctor-bashing--characterized the results and how the press reported them. But, as Burt argues persuasively in this book, the reasons go far deeper than medical arrogance. He constructs a compelling case for the idea that most Americans--including patients and families, along with their doctors--cannot make rational end-of-life decisions because we are all struggling with a deep ambivalence about death. On the one hand, we know that it is inevitable, a biological and morally neutral inevitability. On the other hand, we view death as inherently evil. Much of the conflict and mistreatment of the dying over the last century, he argues, rises directly from our inability--or refusal--to accept our conflicting feelings about our common fate.
Before the Civil War, the vast majority of Americans died at home, with all the attendant care and grief that witnessing a family member's death entails. The war caused tens of thousands of men, a substantial percentage of the nation's population, to die far from home. One result was the rise of the mortuary business, whose services were suddenly in great demand from families who wanted their loved ones' bodies shipped home for burial. The Civil War also ushered in a dramatic shift in the social role of doctors, who increasingly found themselves in the position of being the overseers of death. By the mid-20th century Americans had handed the responsibility for their loved ones' ends to nursing homes and hospitals.
The post-Vietnam era and feminism brought an effort to return control of death to families and individuals. In the 1970s, this movement took the form of such judicial decisions as Roe v. Wade and the Karen Ann Quinlan case, in which the family of a young woman in a coma appealed to the courts to force her doctors to remove life-sustaining technology. The courts' rulings gave rise to the right-to-die movement. Hospitals instituted programs to support "patient choice," living wills, and DNR decisions by patients and their families. A decade later, the SUPPORT trial found that efforts to transfer power over decisions surrounding death had little effect.
Why can't we as a nation help people die with dignity, and without pain? In Burt's view, Americans cannot, or at least have not, acknowledged our ambivalence about death. We want to rationally control its timing and course, while simultaneously urging doctors to do everything possible to stave it off. We have shoved the decisions off onto doctors and then castigated them for turning away from the heavy burden of compassion. We know intellectually that death is inevitable, yet we cling stubbornly, and largely subconsciously, to the irrational belief that we can somehow avoid it by refusing to think about it. "The breeding ground for abuse of dying people," writes Burt, "is in the silences engendered by ... social isolation. Effective counteracting of this social isolation does not depend on rational mastery of death. It depends on enlarging everyone's tolerance for their inability to achieve this mastery."
