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

促进临终决策准备的代表性干预

• 批准号: 7768694
• 负责人: MI-KYUNG SONG
• 金额: $ 64.69万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2014-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7768694
• 关键词: Address; Advance Directives; African American; Age; American; Anxiety; Cardiovascular Diseases; Caring; Caucasians; Caucasoid Race; Cessation of life; Chronic Disease; Clinic; Clinical; Comorbidity; Conflict (Psychology); Decision Making; Dependence; Dialysis patients; Dialysis procedure; Distress; Effectiveness; End stage renal failure; Ethics; Face; Failure; Family; Family member; Futile Treatments; Goals; Hospitalization; Hour; Intervention; Interview; Lead; Life; Life Experience; Measures; Mediating; Mediator of activation protein; Morbidity - disease rate; Outcome; Outpatients; Patient Care; Patient Education; Patients; Personal Satisfaction; Persons; Pilot Projects; Preparation; Race; Randomized Controlled Trials; Readiness; Recruitment Activity; Role; Series; Symptoms; Technology; Testing; Time; Training; Trust; base; clinical practice; depression; design; effective intervention; end of life; end of life care; end-of-life decision making; improved; intervention effect; mortality; post intervention; psychological distress; psychosocial; public health relevance; quality of death; standard care; surrogate decision maker; therapy design

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.

描述（由申请人提供）：透析是450,000名患有末期肾脏疾病（ESRD）的美国人生存的核心。然而，透析患者的合并症明显和高死亡率（每年24％）。在决定停止透析后，四分之一的ESRD患者死亡发生。但是，如果患者与替代人之间就护理目标没有任何讨论，那么如果人们没有讨论自己的决策能力，那么是否继续透析的问题可能会造成道德上的僵局，并对代理决策者造成严重的心理困扰。使用代表性的患者教育方法，我们开发和试点测试了精神干预措施（共享患者的疾病代表以增加信任），以改善有关患者及其代理决策者之间寿命终止护理的讨论。精神是一个6步，2次，面对面的干预措施，以训练有素的干预主义者以面试形式提交给患者和代理。拟议的随机对照试验将测试精神干预对ESRD患者及其代理人之间的终止决策的准备的影响，并减少在决策和社会心理病态期间的替代物的冲突。受试者将是从门诊透析诊所招募的200名高加索和非裔美国人患者，及其选择的代替代决策者。准备结果（Dyad一致性，患者决定性冲突和替代决策信心）将在干预后2、6和12个月进行测量。替代决定性冲突和社会心理病态（焦虑，抑郁和创伤后痛苦症状）将在患者住院后2周进行衡量，需要替代决策。为了将患者死后的精神与标准护理对替代物的影响进行比较，将在患者死亡后的3个月和6个月内测量心理社会性病。我们还将探讨种族对干预效果的潜在影响，并检查干预效果的调解人和主持人。 公共卫生相关性：拟议的随机对照试验将测试旨在改善患者及其替代决策者之间的临终护理讨论的精神干预措施。受试者将是从门诊透析诊所招募的200名高加索和非裔美国人患者，及其选择的代替代决策者。与ESRD患者一起测试的精神干预有可能对改善面临生命终止决策的重病及其家人的护理产生广泛的影响。