The Clash of Meanings: Medical Narrative and Biographical Story at Life's End

Current medical practice does not allow for a transition, a process, a passage between life and death. Though is of JL course a universal biological fact, dying process, like all life-course passages, is culturally patterned. Today in United States, most deaths occur in acute-care hospital. The widespread understanding that there is problematic is a response to fact that end of life is conceived largely (though not entirely) in a medical idiom that seeks to diagnose disease while dying occurs and to prolong life for as long as possible with best technology available. The notion of death with dignity is a cultural response both to use of high-technology hospital medicine and to institutional press toward curafive and restorative therapies regardless of patient's biography and nearness to end of life. Grassroots community efforts to ensure that deaths take place at home, innovations in medical school teaching that view as inevitable and not as failure, and palliative care services in hospitals are all efforts to provide end-of-life care without technologies for life prolongation-so that a dignified and meaningful will be produced. Those efforts are by now a well-articulated rebellion against pervasiveness and dominance of a model perceived to have run amok (SUPPORT, 1995). One difficulty in addressing concerns related to end-of-life care is lack of clarity among health professionals, patients, and families ali@ about when actual dying process begins. For all its diagnostic acumen at end of twentieth century, medicine, as system of knowledge and clinical practice, is seemingly unable to consider, first, whether a particular medical crisis is last one for an individual and, second, whether or not a person is dying. Physicians are not expert at determining whether patients are in last stages of illness or when will occur (Lynn et at., 1997; Lynn, Teno, and Harrell, 1995). One common result of not knowing and not acknowledging when dying begins and not knowing when is likely to occur is press to continue treatments, sometimes almost to moment of (suppoRT, 1995). Moreover, medicine in United States generally does not allow for a transition, a process, a passage between life and except in most perfunctory way. Thus medical ideology cannot account for what that process might look like and what its range of variation is likely to be, and medical practice cannot consider new forms of action appropriate to a time for dying. Knowing precise moment or specific clinical signs that determine the beginning of dying transition can only be posited as necessary or as a solution to problem of in an affluent society where right to advanced and ongoing medical care is considered a given, hospitalization to sustain old and frail lives is frequent, and a variety of life-prolonging biotechnologies exists. I turn to two narratives of old age, decline, and as exemplars of problem of for many Americans. I use term narrative in a well-recognized sense, meaning accounts from individuals that portray their subjective experience, including a sense of intention, explanation, and emotion. Social scientists have borrowed concept of narrative from traditional humanities and view it as an expansive tool through which to articulate how individuals construct meaning and negotiate their worlds. Narrative representations of aging, illness, and dying provide a way to explore multiple meanings and voices that are expressed during life-course transitions. The examples that follow are not of hightechnology medicine, intensive care unit treatments, or heroic intervention, aspects of problem that receive a great deal of consideration. Rather, these narratives are about a different feature- slow senescence and kinds of concern and suffering it produces when dying is not acknowledged and a dying role for patient is not recognized. …