Representational Intervention to Promote End-of-Life Decision-Making Preparation

描述（由申请人提供）：透析是45万美国终末期肾病（ESRD）患者生存的关键。然而，透析患者有显著的合并症和高死亡率（每年24%）。四分之一的ESRD患者死亡发生在决定停止透析后。然而，当人已经失去了他们的决定能力，如果没有事先讨论的病人和代理人之间的目标护理，是否继续透析的问题可能会造成道德僵局，并造成深刻的心理困扰代理决策者。使用代表性的方法，病人的教育，我们开发和试点测试的SPIRIT干预（分享病人的疾病表示，以增加信任），以改善病人和他们的代理决策者之间的讨论临终关怀。SPIRIT是一个6步、2个疗程、面对面的干预，由训练有素的干预人员以访谈形式向患者和代理人介绍。拟议的随机对照试验将测试SPIRIT干预在改善ESRD患者及其代理人的临终决策准备以及减少代理人在决策和心理社会发病率期间的冲突方面的影响。受试者将是从门诊透析诊所招募的200名白人和非洲裔美国人ESRD患者及其选择的替代决策者。将在干预后2个月、6个月和12个月测量准备结果（二元一致性、患者决策冲突和替代决策信心）。将在患者住院后2周测量需要代理决策的代理决策冲突和心理社会发病率（焦虑、抑郁和创伤后痛苦症状）。为了比较SPIRIT与标准治疗对患者死亡后替代者的影响，将在患者死亡后3个月和6个月测量心理社会发病率。我们还将探讨种族对干预效果的潜在影响，并研究干预效果的中介者和调节者。 公共卫生相关性：拟议的随机对照试验将测试SPIRIT干预措施，旨在改善患者及其代理决策者之间关于临终关怀的讨论。受试者将是从门诊透析诊所招募的200名白人和非洲裔美国人ESRD患者及其选择的替代决策者。在ESRD患者中进行测试的SPIRIT干预有可能对改善面临临终决策的重病患者及其家人的护理产生广泛影响。

DESCRIPTION (provided by applicant): Dialysis is central to survival for 450,000 Americans with end-stage renal disease (ESRD). Yet patients on dialysis have significant comorbidities and high mortality rates (24% annually). One out of four ESRD patient deaths occurs after a decision to stop dialysis. However, when persons have lost their decision capacity if there has been no prior discussion between the patient and surrogate regarding goals of care, the issue of whether to continue dialysis can pose an ethical impasse and cause profound psychological distress for surrogate decision makers. Using the representational approach to patient education, we developed and pilot tested the SPIRIT intervention (Sharing the Patient's Illness Representation to Increase Trust) to improve discussions about end-of-life care between patients and their surrogate decision makers. SPIRIT is a 6-step, 2- session, face-to-face intervention presented to both patient and surrogate by a trained interventionist in an interview format. The proposed randomized controlled trial will test the effects of the SPIRIT intervention in improving preparedness for end-of-life decision making among ESRD patients and their surrogates and reducing surrogates' conflict during decision making and psychosocial morbidities. Subjects will be 200 Caucasian and African-American patients with ESRD recruited from outpatient dialysis clinics and their chosen surrogate decision makers. Preparedness outcomes (dyad congruence, patient decisional conflict, and surrogate decision making confidence) will be measured at 2, 6, and 12 months post-intervention. Surrogate decisional conflict and psychosocial morbidities (anxiety, depression, and post-traumatic distress symptoms) will be measured 2 weeks after the patient's hospitalization that required surrogate decision making. To compare the effects of SPIRIT to those of standard care on surrogates after the patient's death, psychosocial morbidities will be measured at 3 and 6 months after the patient's death. We will also explore the potential impact of race on intervention effects and examine mediators and moderators of the intervention effects. PUBLIC HEALTH RELEVANCE: The proposed randomized controlled trial will test the SPIRIT intervention designed to improve discussions about end-of-life care between patients and their surrogate decision makers. Subjects will be 200 Caucasian and African-American patients with ESRD recruited from outpatient dialysis clinics and their chosen surrogate decision makers. The SPIRIT intervention to be tested with ESRD patients has the potential to have a broad impact in improving care for the seriously ill and their families who face end-of-life decision making.