Improving End-of-Life Communication with ESRD African American Patients

描述(由申请人提供)：医疗技术的快速进步、慢性病的流行和人口老龄化使临终决策复杂化。终末期肾病(ESRD)是一种慢性疾病，技术可以显著延长生命长度。然而，透析患者忍受着多种并存的疾病，这些疾病损害了他们的生活质量，增加了他们的死亡风险。这种限制生命的疾病在非裔美国人中的发病率高得不成比例。当事先没有与代理决策者讨论护理目标时，是否继续为丧失决策能力的人进行透析的问题造成了伦理僵局。这项拟议的研究测试了一项长达一小时的干预、以患者为中心的提前护理计划(PC-ACP)的可行性、可接受性和有效性，该计划应加强患有ESRD的非裔美国人与他们的代理决策者之间的临终沟通。基于患者教育的表象方法，PC-ACP系统地探索患者对其健康问题的认知表象，并基于这些表象促进沟通、知情决策和护理计划。这种干预措施已经成功地用于患有慢性病的高加索人。研究对象将是患有ESRD的56对非裔美国人及其代理决策者。在完成基线评估后，DUADS将被随机分配到两种情况之一：(1)PC-ACP干预组；(2)常规护理对照组。干预将在透析诊所进行。结果测量，包括疾病陈述、护理目标的患者与代理的一致性、患者在做出临终选择时的困难程度、代理做出决策的舒适度以及患者和代理的心理/精神健康，将在基线、1周和3个月后完成。可行性将在招募过程中、整个研究期间以及受试者完成研究后进行评估。可接受性将通过在1周和3个月采访干预双方以及使用患者-临床医生互动质量指数、文化敏感度和沟通质量问卷来评估。如果成功，这项试点研究将提供评估干预效果所需的重要知识。

DESCRIPTION (provided by applicant): Rapid advancements in medical technology, prevalence of chronic illness, and the aging population complicate end-of-life decision making. End-stage renal disease (ESRD) is a chronic illness wherein technology significantly extends the length of life. However, dialysis patients endure multiple co-morbid conditions that impair their quality of life and increase their risk of death. The incidence of this life-limiting illness is disproportionately higher among African Americans. The issue of whether to continue dialysis for persons who have lost their decisions capacity poses an ethical impasse when there has been no prior discussion with surrogate decision-makers regarding goals of care. The proposed study tests the feasibility, acceptability, and efficacy of an hour-long intervention, Patient- Centered Advance Care Planning (PC-ACP) that should enhance end-of-life communication between African Americans with ESRD and their surrogate decision-makers. Based on the Representational Approach to Patient Education, PC-ACP systematically explores patient's cognitive representation of his/her health problem and facilitates communication, informed decision-making, and care planning based on the representations. This intervention has been used successfully in Caucasians with a chronic illness. Subjects will be 56 dyads of African Americans with ESRD and their surrogate decision-makers. After the completion of a baseline assessment, dyads will be randomly assigned to one of 2 conditions: (1) a PC-ACP intervention group; and (2) a usual care control group. The intervention will be delivered at the dialysis clinic. Outcome measures, including illness representations, patient-surrogate congruence for goals of care, patient degree of difficulty in making end-of-life choices, surrogate level of comfort in decision-making, and patient and surrogate psychological/spiritual well-being, will be completed at baseline, 1 week, and 3 months later. Feasibility will be assessed during recruitment, throughout the study period, and after subjects' completion of the study. Acceptability will be assessed by interviewing intervention dyads at 1 week and 3 months and by using patient-clinician interaction quality index, cultural sensitivity, and the quality of communication questionnaires. If successful, this pilot study will provide the important knowledge required to assess the efficacy of the intervention.