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Choosing Hospice or Choosing Dying : : Patient Autonomy and Home Hospice Care


Up until now, scholars who studied end of life medical care and patient autonomy have concluded that dying patients have little opportunity or desire for control over medical treatments, contesting that they are constrained by medical authority and institutional features. This dissertation argues that there is a serious flaw in this research and therefore its conclusions. This research conceives of these choices as "medical decisions" and consequently focuses on the interventions of medical professionals and institutions. The existing literature makes too clean a distinction between medical decisions and social decisions. In examining the case of home hospice care I find that many dying patients have both the opportunity and desire to make many significant choices about their medical care at the end of life. Patients generally desire autonomy and when they resist making choices it is not due to deference to medical authority, but instead due to the complex social factors they must weigh in making decisions about medical care. Patients experience an intermingling of social and medical concerns that make it difficult to meaningfully draw a line between medical decisions and social decisions. Although this research involves home hospice care, I suggest that it illuminates social factors common to all medical decision- making, but which are difficult to discern in conventional research in hospital or outpatient settings. I provide five empirical chapters to support this conclusion showing how physicians, patients and their family members, hospice workers, and external institutions all conceptualize hospice care as a social decision

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