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

描述(申请人提供)：透析是450,000名患有终末期肾病(ESRD)的美国人生存的核心。然而，接受透析的患者有显著的并发症和高死亡率(每年24%)。每四例终末期肾病患者死亡中就有一例发生在决定停止透析之后。然而，如果患者和代孕者之间事先没有就护理目标进行讨论，当患者失去决策能力时，是否继续透析的问题可能会造成伦理僵局，并给代孕者带来深刻的心理痛苦。使用代表性方法对患者进行教育，我们开发并试行了精神干预(分享患者的疾病陈述以增加信任)，以改善患者与他们的代理决策者之间关于临终关怀的讨论。SPIRIT是一种由训练有素的干预者以采访的形式向患者和代理人介绍的6步、2次会议、面对面的干预。这项拟议的随机对照试验将测试SPIRE干预在改善ESRD患者及其代理人的临终决策准备、减少代理人在决策过程中的冲突和心理社会发病率方面的效果。受试者将是从门诊透析诊所招募的200名患有终末期肾病的高加索人和非裔美国人及其选定的代孕决策者。准备结果(二元体一致性、患者决策冲突和替代决策信心)将在干预后2、6和12个月进行测量。代孕决策冲突和心理社会疾病(焦虑、抑郁和创伤后痛苦症状)将在患者住院2周后进行测量，这需要代孕决策。为了比较精神护理和标准护理对患者死亡后代孕母亲的影响，在患者死亡后3个月和6个月时将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，并考察干预效果的中介和调节因素。 公共卫生相关性：拟议的随机对照试验将测试精神干预，旨在改善患者和他们的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名患有终末期肾病的高加索人和非裔美国人及其选定的代孕决策者。将对ESRD患者进行测试的精神干预可能会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.