The Ambiguous Dying Syndrome

Health professionals, policymakers, and lay people operate under the false assumption that most people will know when they have arrived at the end of life," or are "dying," or are "terminally ill." These terms are sometimes used interchangeably. No consensus has been established in the literature as to which term is preferred under different conditions. Many individuals approaching death--and their loved ones--will not fully benefit from the recent surge of interest--from major foundations, government agencies, health care educators, and even public television--to improve care at the end of life, because their prognosis is highly ambiguous rather than recognizably terminal. As the leading causes of death have switched from acute to chronic, the conceptualization and operationalization of "end of life" is too narrow to be meaningful in many contemporary deaths. What most lay people mean by "dying" bears little resemblance to the days, weeks, and months that typically precede death as we begin the 21st century. Our social construct of the "end of life" excludes many of deaths that occur, in part because the dying role is juxtaposed against the sick role, with little formal recognition that most dying now occurs in the context of advanced chronic illness. We avoid admitting that a dying process is taking place until death is upon us, and in so doing we deprive ourselves of opportunities to make plans regarding the need for or dispersion of resources, the quest for spiritual meaning-making, and the completion of heart-felt relationships, and we forfeit the kind of extended help and palliative care available to individuals who are dying and their loved ones. This article attempts to build a case for the need to revise the way U.S. society and the social work profession conceptualize the end of life. It documents the difficulty physicians face in determining the amount of remaining life at the individual level. The term "ambiguous dying syndrome" is used to label the collection of medical and social uncertainties that can result when "dying" refers only to people whose time until death is "known" as being in the near future. This definition excludes people who because of serious illness or frailty are at high risk of death at a time uncertain. A more explicit approach to the ambiguity associated with many contemporary causes of death would better serve clients and families, especially those who value self-determination. Social work perspectives and skills can be important assets in health care settings that choose to deal explicitly with ambiguity. This call for a reconceptualization of dying is based on a review of end-of-life articles and books in the medical, nursing, and social work literatures, coupled with my experience on research teams based in nursing home settings. Twelve years of involvement with dementia support groups has also led me to believe that the narrow way in which dying is conceptualized robs many dying individuals and families of the opportunity to fully participate in decisions related to medical treatment, use of financial and community resources, as well as the use of remaining physical and emotional energy. HISTORICAL BACKGROUND Dying changed dramatically during the 20th century (Bern-Klug, Gessert, & Forbes, 2001). Until the past hundred years, when a person's life was seriously threatened by illness or accident, little could be done medically to halt or alter the process of dying. Within a week of onset of the serious illness, it was not uncommon for the person to have died or recovered; "nature took its course" (Tilden, Tolle, Nelson, Thompson, & Eggman, 1999, p. 438). During the first half of the 20th century huge and unprecedented improvements in postponing death for millions of people, especially young people occurred as a result of public health initiatives and treatment for infectious and parasitic conditions (White & Preston, 1996). …