Bioethical Frameworks Informing Medical Decision-Making around Palliative Care

人口老龄化和慢性病的增加意味着越来越多的人在生命的最后阶段经历着身体和精神上的痛苦。绝症患者以及他们的生物医学和家庭护理人员在生命结束时想要什么仍然知之甚少。本研究调查了绝症患者、姑息治疗临床医生和其他人如何定义有尊严的死亡。在人们高度关注尊严死亡的时刻，这项研究对改善临终关怀具有直接意义。该项目还为来自代表性不足群体的一名博士后研究员和一名研究生提供培训。结果将广泛传播给学术和非学术受众，包括卫生保健工作者和其他利益攸关方。本项目由文化人类学与EPSCoR （Established Program to stimulation Competitive Research）联合资助。本项目探讨了家庭和医疗服务提供者如何应对旨在容纳绝症患者的临终法律和实践。该项目利用人种学、在卫生机构的访谈和临终病人的案例研究来调查当地对有尊严死亡的定义；检查姑息治疗提供者在保证患者有尊严地死亡方面面临哪些挑战；并跟踪正在进行的有关扩大临终选择的社会和立法活动。这项研究有助于发展和检验解释文化和社会因素的理论，这些因素决定了临终者和负责照顾他们的人在生命结束时的经历和意义。医学人类学和其他社会科学的护理工作主要侧重于努力促进、延长和/或改善生活质量。本研究聚焦于临终决策情境下的照护提供。研究结果推进了护理、生物伦理学和社会老年学领域的基础科学理论。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

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.