"The Social Face of Death" is project of the Poynter Center for the Study of Ethics and American Institutions, with major funding from the Open Society Institute and additional support from the Indiana Humanities Council and the National Endowment for the Humanities.
Description of the project | Monograph
Many Americans die badly. They die alone in hospitals after intrusive and futile treatment options have been exhausted. Attempts to improve the lot of the dying have focused on attempts to empower patients' decision making and to improve communication between patients and health care professionals. Every state now has enacted legislation on advance directives, and a growing body of judicial opinion focuses on associated issues. Unfortunately, the evidence does not indicate an improvement in the experience of death in America.
Equally important -- but neglected -- issues concern problems of communication between dying persons and their families and friends; the nature of improvisations required by the effort to maintain social ties; distortions in communication among the healthy; loss of reciprocity in social arrangements. Ignorance of these phenomena may help to explain why reforms seem to have fallen short.
Funded by the Open Society Institute's Project on Death in America, the Poynter Center's study attempted to listen to the voices of real people as they discussed the problems they confronted with the deaths of family members and close friends. Researchers explored respondents' experiences with death, the sources of support they found most helpful and their hopes and fears about their own deaths. They discussed end-of-life care, and what could have been done to improve the lot of the dying.
The research drew on a community history study of Paoli, Indiana, conducted by IU's Center for the Study of History and Memory (then called the Oral History Research Center), a collaborator in the project, in the late 1980s. The project comprised interviews with 26 residents of Paoli and surrounding communities, who told their stories candidly and movingly. They spoke with grace, courage and generosity about experiences that were painful to remember, let alone to articulate.
Acknowledging Americans' tendency to shrink from the subject, many respondents described death as "a part of life" and stressed the importance of spiritual preparation. Many distinguished explicitly between fear of death, which they denied, and fear of dying. They worried about leaving their families, about experiencing unrelieved pain, but their greatest fear was that they would die a long, lingering death, perhaps in a state of dementia.
Respondents' ages ranged from 27 to 98. Several were old enough to recall earlier times, when medicine had less to offer and when death was a familiar, almost domestic experience. They recounted the sudden deaths of young people and described the custom of bringing the body home for a wake or vigil.
The dark side of improved medical care is that it may force wrenching decisions on the families of critically ill patients. Although most respondents were aware of living wills, and some gratefully described relatives who had made known their wishes about their care, only a small minority had executed a formal document.
Another constellation of questions concerned issues of coping. Respondents discussed whether the deceased had had the deaths they wanted and what kind of death they would prefer for themselves. They talked about their interactions with professional health care givers, and they described their impressions of high technology medicine and options for end-of-life care, including hospice and nursing homes. Few reported financial stress in connection with death and dying; those who raised this issue tended to be members of professions that are responsible for clients' finances (an attorney, a bank trust officer).
Respondents found solace after a death in religious belief. They drew
upon their communities, and especially their churches, for support, and
they cited the help of health care givers and funeral directors. The monograph
concludes with modest proposals for change that might improve the experience
of death in America. Suggestions include efforts by the health care system
to inform and empower families in advance of need, training programs for
patient advocates, expanded options for end-of-life care and encouragement
of discussions of death within families.
The monograph is available in PDF or you may order a printed copy from the Poynter Center for $5.00. Pimple, Kenneth D., Judith A. Granbois and David H. Smith, "The Social Face of Death: Confronting Mortality in Paoli, Indiana" (January 1998).
