The Journal of the American Medical Association recently reported the results of a major study conducted at five U.S. teaching hospitals. The researchers found that physicians discussed patients' preferences in only 41 percent of the cases in the study; that physicians misunderstood their patients' preferences in a staggering 80 percent of the cases; that physicians failed to implement patients' requests for do not resuscitate (DNR) orders in half the cases.(1)
The SUPPORT study confirms the unsystematic observations of many observers. Americans continue to die badly, and current reform strategies are not working. Why have they failed?
Failure to improve the experience of dying may be related to the milieu in which legal and ethical reforms have occurred, a milieu characterized by the assumption that the core of the problem is political; that professional bias, insensitivity and dominance have prevented Americans from dying as they would like. Given that assumption, it is natural to conclude that reform equates with increased power for patients. Hence the great stress on improved communication between patient and professional, on promoting advance directives and defending the right to refuse treatment. "Whose Life is it Anyway?" The question answers itself, and patient autonomy becomes the overriding concern.
If attempts to improve the lot of the dying based on this paradigm have failed, it is appropriate to question the accuracy of the original diagnosis. We may have been looking at the problem of death from the wrong angle; our social diagnosis may have been wrong. Perhaps we have focused too much attention on hospitals and other health care institutions, on doctors and nurses, on legislative reform.
We may need to take a fresh look at Americans' experiences with death and dying, how they feel about the end-of-life treatment their loved ones have received, and what average Americans think could be done to improve the lot of the dying and their families. To uncover the roots of the problems of dying in America, we believe we should try to listen again to what Americans say about their deaths and the deaths of those they know and love. Exactly what is it about death that they find most troubling?
This study offers a modest first step toward an answer to that question. We worked with limited staff and time; we studied a group of people easily to hand, and even at that we cannot claim a fully representative sample of one small community. But we have listened to enough people to be confident that the concerns we identify are important to them. And they are important voices in the American chorus.
In order to maintain some degree of confidentiality, we use our respondents' real first names with surname initials.
The excerpts from the interviews included in this monograph are faithful to the transcriptions, but they are not absolutely literal. We have silently deleted false starts ("She, she still seems to be aware, though?"), placeholders ("uh," "okay?"), and brief interpolations by the interviewer ("I see"). Square brackets indicate that we have corrected a slip of the tongue by substituting the appropriate word ("We're not [immortal]") or to show that we have added words to clarify meaning. Ellipses (. . .) indicate the deletion of text. The pipe character ( | ) is used sparingly to indicate an abrupt change in the flow of thought ("She lived | She raised me").
These issues were of concern, although we were discovered that financial issues featured less prominently in respondents' comments than we had anticipated. The structure of this report is adapted from our original hypotheses in accord with our findings from the interviews. In Chapter 2, we describe some of the dramatic impact of improved medical technology in this century. Many respondents remember a time when dying was a relatively quick and seemingly inevitable process, when people often died at home with little medical intervention. Unlike their parents and grandparents, our respondents all too often face decisions about terminating treatment for their dying loved ones. Virtually all of them have thought about enacting an advance directive, but hardly any of them have followed through.
In Chapter 3, we describe many of the challenges that respondents have confronted when their loved ones were dying, including the challenge of communicating with health care professionals and the differences they encountered in end-of-life care in hospitals, hospice and at home. We also recount respondents' attitudes toward the termination of treatment, their fears about pain, and their financial concerns.
In Chapter 4, we describe sources of comfort for survivors, including the power of religious belief and the importance of emotional support from friends, church members, and professionals. We found that funerals are important rituals in Paoli, and that disposing of the deceased's property is painfully divisive for some families.
In the conclusion, we summarize our findings and offer some suggestions for change -- either building on initiatives already in place or branching out in new directions.
Social Face of Death
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