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. ? ? ?
