Bioethical Frameworks Informing Medical Decision-Making around Palliative Care

Population aging and the rise of chronic illness means that more and more people suffer a slow decline at the end of life marked by physical and psychic pain. What the terminally ill as well as their biomedical and family caregivers want at the end of life remains poorly understood. This research investigates how the terminally ill, palliative care clinicians, and others define a dignified death. At a moment of heightened attention to death with dignity, this research has direct implications for improving end-of-life care. The project also provides training for a postdoctoral researcher and a graduate student from underrepresented groups. Results will be disseminated broadly to academic and non-academic audiences, including healthcare workers and other stakeholders. This project is jointly funded by Cultural Anthropology and Established Program to Stimulate Competitive Research (EPSCoR). This project explores how families and medical providers respond to end-of-life laws and practices meant to accommodate terminally ill patients. The project uses ethnography, interviews in health facilities, and case studies of dying patients to investigate local definitions of dignified death; to examine what challenges palliative care providers face in guaranteeing their patients a dignified death; and to track ongoing social and legislative activity regarding expanded end-of-life options. This research helps to develop and test theories that explain the cultural and social factors that shape experience and meaning at the end of life among the dying and those responsible for their care. Work on care in medical anthropology and other social sciences has been oriented mostly on efforts to foster, extend, and/or improve the quality of life. This study focuses on care delivery in the context of end-of-life decision-making. The results advance basic scientific theory in the areas of care, bioethics, and social gerontology. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.