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Family Decisions About Palliative Care

关于姑息治疗的家庭决定

基本信息

批准号：
6805206
负责人：
ALISON KARASZ
金额：
$ 8.35万
依托单位：
ALBERT EINSTEIN COLLEGE OF MEDICINE
依托单位国家：
美国
项目类别：
财政年份：
2003
资助国家：
美国
起止时间：
2003-09-30 至 2007-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/6805206
关键词：
African American Hispanic Americans caucasian American clinical research decision making ethics family human subject interview morals outcomes research patient oriented research quality of life racial /ethnic difference terminal patient care

项目摘要

#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.

#9行为医学基础研究对临终关怀决策的研究主要集中在个别患者的决定上。然而，在大约75%的死亡中，家庭成员承担着做出临终护理决定的责任。目前的伦理和法律的指导方针，家庭决策纳入了审议，合理的决策模式，优先考虑病人的个人自主权和事先的愿望。来自生物伦理学文献的大量轶事数据表明，这些准则是不够的，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，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准则和护理模式，需要进行实证研究，以提高我们对家庭如何实际做出临终护理决定的理解。在文献中报告的关于这一主题的少数研究中，大多数是回顾性研究或在决策范围有限的重症监护室进行。拟议的研究是在临终关怀的关键转折点对家庭决策进行观察性定性调查：决定将治疗方向从治疗性努力转向姑息治疗方法。将招募三个种族的患者进行跨文化比较。本研究利用参与观察家庭互动和决策过程，定性访谈。随访访谈，在六个星期的时间间隔，包括评估的影响和意义的姑息治疗的决定对家庭成员。研究的目的包括： decis！家庭成员的决策过程和道德优先事项，审查实现决策优先事项的障碍，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关键变量、过程和结果，这些变量、过程和结果可以在一项关于家庭决策的更大的假设检验研究中加以衡量。