Family Decisions About Palliative Care

#9行为医学基础研究 有关临终关怀决策的研究主要集中在患者个体的决策上。然而，在大约75%的死亡中，家庭成员承担着在临终关怀方面做出决定的责任。目前家庭决策的伦理和法律指南包含了一种慎重、理性的决策模式，优先考虑患者的个人自主权和先前的意愿。来自生物伦理学文献的大量轶事数据表明，这些指导方针是不充分的，反映了一种以个人权利为导向的道德框架，可能与许多家庭的实际优先事项无关 需要，特别是来自非白人、非中产阶级社区的家庭。然而，为了制定符合家庭需求的伦理指导方针和护理模式，需要进行实证研究，以提高我们对家庭如何实际做出关于临终关怀的决定的理解。在文献中报道的关于这一主题的少数研究中，大多数是回顾性研究，或者是在重症监护病房进行的，在那里决策的范围可能有限。 这项拟议的研究是对临终关怀关键转折点的家庭决策的观察性、定性调查：决定将治疗方向从治疗努力转向姑息治疗方法。将招募来自三个民族的患者进行跨文化比较。本研究采用了参与者观察家庭互动和决策过程，以及定性访谈的方法。每隔六周进行一次后续访谈，以评估姑息治疗决定对家庭成员的影响和意义。研究的目的包括：检查 对家庭成员的决策过程和道德优先顺序进行研究，检查实现决策优先顺序的障碍，调查决策的长期影响，并调查决策过程中的跨文化差异。这项研究的总体目标是确定可以在更大的家庭决策假设检验研究中衡量的关键变量、过程和结果。

#9 Basic Research in Behavioral Medicine Research on decision-making in end of life care has focused largely on the decisions of individual patients. However, in about 75% of deaths, family members bear the responsibility of making decisions in end of life care. Current ethical and legal guidelines for family decision making incorporate a deliberative, rational model of decision making which gives priority to patients' individual autonomy and prior wishes. A wealth of anecdotal data from the bioethics literature suggest that these guidelines are inadequate, reflecting an individual rights-oriented moral framework that may be irrelevant to many families' actual priorities and needs, especially families from non-white, non-middle class communities. Yet in order to develop ethical guidelines and models of care that meet families' needs, empirical research is needed to improve our understanding of how families actually make decisions about end of life care. Of the few studies reported in the literature on this topic, most are retrospective studies or have been conducted on intensive care units where decision-making may have limited scope. The proposed study is an observational, qualitative investigation of family decision-making at a key turning point in end of life care: the decision to shift the direction of treatment away from curative efforts towards a palliative care approach. Patients from three ethnic groups will be recruited for the purpose of cross-cultural comparison. The study utilizes both participant observation of family interactions and decision-making processes, and qualitative interviewing. A follow up interview at a six week interval is included to assess the impact and meaning of palliative care decisions on family members. Aims of the study include: examining decis!on-making processes and moral priorities of family members, examining the barriers to realizing decision making priorities, investigating the long term impact of decision-making, and investigating cross cultural differences in decision processes. The overall goal of the study is to identify key variables, processes and outcomes that can be measured in a larger, hypothesis-testing study of family decision making.