Tarzian Anita J, Neal Maggie T, O'Neil J Anne
University of Maryland, Baltimore, Maryland 21201-1786, USA.
J Palliat Med. 2005 Feb;8(1):36-48. doi: 10.1089/jpm.2005.8.36.
Individuals who are homeless may encounter various barriers to obtaining quality end-of-life (EOL) care, including access barriers, multiple sources of discrimination, and lack of knowledge among health care providers (HCPs) of their preferences and decision-making practices. Planning for death with individuals who have spent so much energy surviving requires an understanding of their experiences and preferences.
This study sought to increase HCPs' awareness and understanding of homeless or similarly marginalized individuals' EOL experiences and treatment preferences.
Focus groups were conducted with homeless individuals using a semi-structured interview guide to elicit participants' EOL experiences, decision-making practices, and personal treatment preferences.
SETTING/SUBJECTS: Five focus groups were conducted with 20 inner-city homeless individuals (4 per group) at a free urban health care clinic for homeless individuals in the United States. Sixteen of the 20 participants were African American; 4 were Caucasian. None were actively psychotic. All had experienced multiple losses and drug addiction.
Five main themes emerged: valuing an individual's wishes; acknowledging emotions; the primacy of religious beliefs and spiritual experience; seeking relationship-centered care; and reframing advance care planning.
The narrative process of this qualitative study uncovered an approach to EOL decision-making in which participants' reasoning was influenced by emotions, religious beliefs, and spiritual experience. Relationship-centered care, characterized by compassion and respectful, two-way communication, was obvious by its described absence--reasons for this are discussed. Recommendations for reframing advance care planning include ways for HCPs to transform advance care planning from that of a legal document to a process of goal-setting that is grounded in human connection, respect, and understanding.
无家可归者在获得优质临终关怀时可能会遇到各种障碍，包括获取障碍、多种形式的歧视，以及医疗服务提供者（HCPs）对他们的偏好和决策方式缺乏了解。与那些花费大量精力求生的人一起规划死亡，需要了解他们的经历和偏好。
本研究旨在提高医疗服务提供者对无家可归或类似边缘化个体的临终经历和治疗偏好的认识和理解。
采用半结构化访谈指南，对无家可归者进行焦点小组访谈，以了解参与者的临终经历、决策方式和个人治疗偏好。
背景/对象：在美国一家为无家可归者提供服务的免费城市医疗诊所，对20名市中心无家可归者（每组4人）进行了5个焦点小组访谈。20名参与者中有16名是非裔美国人；4名是白人。没有人患有活动性精神病。所有人都经历过多次丧失和药物成瘾。
出现了五个主要主题：重视个人意愿；承认情感；宗教信仰和精神体验的首要地位；寻求以关系为中心的护理；以及重新构建预先护理计划。
这项定性研究的叙述过程揭示了一种临终决策方法，其中参与者的推理受到情感、宗教信仰和精神体验的影响。以同情和尊重的双向沟通为特征的以关系为中心的护理，因其被描述为缺失而显得突出——对此的原因进行了讨论。重新构建预先护理计划的建议包括医疗服务提供者将预先护理计划从法律文件转变为基于人际联系、尊重和理解的目标设定过程的方法。
