False Expectations: Patient Expectation and Experience of Dying in a Biomedical Community

Abstract

It is widely recognized that the role of the physician has undergone dramatic changes in the last century changes which have serous implications for the patient-physician relationship. This is an ethnographic study examining how certain changes in the role and abilities of biomedical physicians have affected patient attitudes and expectations about end-of-life care. In-home interviews were conducted with eighteen persons age fifty-five and older, including a sample of Hemlock Society members. Results indicate a broad spectrum of end-of-life concerns including capacity, autonomy, pain, and burden to loved ones. Most participants reported a reluctance to begin a discussion of death or future deteriorating capacity with their physicians. Instead, when conversations about death were reported, they had been largely limited to the scenarios of catastrophic illness (e.g., hospitalization, ventilator, etc.) and the Living Will. While this discussion does not overlook the utility of the Living Will, it proposes that reliance on this document for preparing patients for end-of-life care is inadequate.