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末期遭受缓慢的衰退，其特点是身体和精神上的痛苦。人们对绝症患者以及他们的生物医学和家庭照顾者在生命末期想要什么仍然知之甚少。这项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。在人们高度关注有尊严的死亡的时刻，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，包括医疗工作者和其他利益攸关方。该项目由文化人类学和建立的激励竞争研究计划(EPSCoR)共同资助。该项目探索家属和医疗提供者如何应对旨在收容绝症患者的临终法律和实践。该项目使用人种学、卫生机构访谈和临终病人个案研究，以调查当地对有尊严死亡的定义；检查临终关怀提供者在确保其病人有尊严死亡方面所面临的挑战；并跟踪正在进行的关于扩大临终选择的社会和立法活动。这项研究有助于开发和测试解释文化和社会因素的理论，这些因素塑造了临终患者和照顾他们的人在生命末期的体验和意义。医学人类学和其他社会科学中关于护理的工作主要侧重于努力培养、延长和/或提高生活质量。本研究的重点是在临终决策的背景下提供护理。这个奖项反映了NSF的法定使命，通过使用基金会的智力价值和更广泛的影响审查标准进行评估，被认为是值得支持的。

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.