An ethnographic account of economic constraints and ethical issues: Terminal illness in three institutional settings

American society and medicine are experiencing severe strains and tensions in their attitudes toward and management of adult terminal illness. Several factors contribute to this crisis of confidence and judgment: (1) The number of our older citizens is steadily increasing. (2) Sophisticated medical technology can sustain biological life beyond previously imagined limits. (3) The very success of medicine has ushered in an era of ambivalence. (4) The boundaries of life and death are no longer clearly defined but open to interpretation. (5) The right to adequate medical care is challenged by concerns over cost containment and the appropriate allocation of health care resources. This research is a qualitative analysis of clinical cases in three institutions: hospital, hospice, and nursing home. The focus is on the decision-making process surrounding adult terminal care. The ethnographer is the main research instrument. Since the research addresses the interplay of bioethics and economic constraints, reflexive ethnography is used to highlight how public policy affects individuals and institutions. In effect, this is an account of the struggles of individuals as they attempt to make sense out of existing ambiguities. Within their particular economic constraints, each institution tailors the dying process so that it accords with its own health care goals and functions. For example, the hospital, an acute care institution, defines and manages terminal illness differently from a hospice. The hospice, an institution designed to address the needs of the dying, avoids any "heroic efforts" to prolong life unduly. The nursing home, a long-term care institution, concentrates primarily on health care maintenance measures designed to prevent flare-ups of chronic conditions or drastic deterioration. Yet each institution has to deal with dying patients. Terminal care requires not only medical expertise but compassion and ethical concern for the patients. Specifically then, bioethics can help health professionals mediate the tensions among institutional goals, economic constraints, technological influences, and patient and family preferences. The extent to which this is true is the focus of this dissertation. Concluding, this dissertation presents proposals on how to cope with some of the problematical areas in all three institutions.