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生命终结决策变得复杂。终末期肾病（ESRD）是一种慢性疾病，其中技术显著延长了生命的长度。然而，透析患者患有多种共病，这些共病损害了他们的生活质量并增加了他们的死亡风险。这种限制生命的疾病的发病率在非裔美国人中不成比例地高。当没有事先与代理决策者就护理目标进行讨论时，是否为失去决策能力的人继续透析的问题构成了伦理僵局。拟议的研究测试了一小时干预的可行性、可接受性和有效性，即以患者为中心的预先护理计划（PC-ACP），该计划应加强非裔美国人ESRD患者与其代理决策者之间的临终沟通。基于病人教育的表征方法，PC-ACP系统地探讨了病人对他/她的健康问题的认知表征，并促进了沟通，知情决策和护理计划的基础上的陈述。这种干预已成功地用于患有慢性疾病的高加索人。受试者将是56对患有ESRD的非洲裔美国人及其代理决策者。完成基线评估后，将二人组随机分配至2个条件之一：（1）PC-ACP干预组;和（2）常规护理对照组。干预将在透析诊所进行。将在基线、1周和3个月后完成结局指标，包括疾病陈述、患者-代理人护理目标一致性、患者做出临终选择的困难程度、代理人决策舒适度以及患者和代理人心理/精神健康。将在招募期间、整个研究期间和受试者完成研究后评估可行性。可接受性将通过在1周和3个月时访谈干预二人组以及使用患者-临床医生互动质量指数、文化敏感性和沟通质量问卷进行评估。如果成功，这项试点研究将提供评估干预措施有效性所需的重要知识。

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.