Preparation for End of Life Decision Making in Mild Alzheimer's Disease

轻度阿尔茨海默病临终决策的准备

• 批准号: 9423416
• 负责人: MI-KYUNG SONG
• 金额: $ 53.34万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-30 至 2022-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9423416
• 关键词: Address; Advance Care Planning; Advance Directives; Affect; Agreement; Alzheimer' s Disease; Behavior Therapy; Belief; Bereavement; Cardiac Surgery procedures; Caring; Cause of Death; Cognitive; Collaborations; Conflict (Psychology); Data; Decision Making; Diagnosis; Disease; Elderly; Emotional; End stage renal failure; Enteral Feeding; Face; Failure; Family; Family Caregiver; Family member; Frail Elderly; Frail Older Adults; Funding; Future; Goals; Heart failure; Impaired cognition; Individual; Intervention; Interview; Judgment; Knowledge; Lawyers; Lead; Left; Life; Living Wills; Measures; Mechanical ventilation; Medical; Memory Loss; Memory impairment; Mental Health; Minority; Modeling; Modification; Online Systems; Outcome; Patient Care Planning; Patient Preferences; Patients; Perception; Persons; Preparation; Process; Qualitative Methods; Quality of life; Randomized Controlled Trials; Readiness; Reporting; Research; Research Personnel; Role; Sampling; Structure; Symptoms; Techniques; Testing; Trust; United States National Institutes of Health; Videoconferencing; Waiting Lists; advanced disease; adverse outcome; base; care burden; comparative efficacy; decision-making capacity; design; end of life; end of life care; end-of-life decision making; experience; falls; improved; insight; novel; patient population; post intervention; prevent; psychological distress; quality of death; surrogate decision maker; therapy development; treatment as usual

Preparation for End-of-Life Decision Making in Mild Alzheimer's Disease ABSTRACT Alzheimer's disease (AD) is a leading cause of death and affect over 5 million people in the U.S. AD cannot be effectively prevented or cured. For those with advanced AD, intensive or burdensome end-of-life care is common. Nearly 41% undergo at least one intensive intervention (e.g., tube feeding, mechanical ventilation) in the last 3 months of life, which may prolong life but not address quality of life or quality of dying. People in the early stages of AD are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. Yet only a minority of older adults with early cognitive impairment engage in ACP following the diagnosis. A failure to engage in ACP before the window of opportunity closes (i.e. before loss of decision making capacity) has serious adverse consequences; family members are left to make decisions regarding care transition, tube feeding, and other life-sustaining treatment, often driven by a culture of technological imperative to deliver aggressive or futile medical care to very frail older adults. These family members experience considerable negative mental health sequelae after they face end-of-life decision making. To address these gaps, we will adapt and pilot test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with patients with mild AD and their surrogates (NIH Stage I behavioral intervention development) to promote open, honest discussions while such discussions about end-of-life care are possible. Our goal is to produce an effective and maximally implementable ACP intervention for patients with mild AD and their surrogates. Specific Aim 1 is to adapt SPIRIT (in person) to target patients with mild AD and their surrogates through a process of modification-pretesting-refinement using stakeholders (patients, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconferencing (SPIRIT-remote). Specific Aim 2 is, in a 3-group RCT with 120 patient-surrogate dyads, to evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT-remote, and their preliminary efficacy compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. We will also evaluate whether SPIRIT-in person and SPIRIT-remote result in an embodiment of the patient's wishes by 1 year post intervention, and interview a sample of surrogates at 1 year to assess the perceived impact of the intervention conditions (secondary aims). Preliminary efficacy data will be analyzed using mixed effects regression models. Qualitative analysis will use content and thematic techniques. This Stage I behavioral intervention development trial of SPIRIT will generate novel insights to fill the critical void of knowledge regarding how to improve ACP for people with mild AD who will progress to an advanced stage of the disease in the foreseeable future.

轻度阿尔茨海默病的临终决策准备 摘要 阿尔茨海默病(AD)是导致死亡的主要原因，在美国有500多万人受到影响。 有效地预防或治愈的。对于晚期阿尔茨海默病患者，重症或繁重的临终护理是 很普通。近41%的人至少接受了一次强化干预(例如，管喂、机械通风)。 生命的最后3个月，可能延长生命，但不涉及生活质量或死亡质量。世界上的人们 鼓励AD的早期患者在仍有能力的情况下参与提前护理计划(ACP) 任命一位代理决策者，并有意义地参与与该代理的ACP讨论。还没有 只有少数患有早期认知障碍的老年人在确诊后会发生ACP。一次失败 在机会之窗关闭之前(即在丧失决策能力之前)参与ACP具有 严重的不良后果；让家庭成员决定是否进行护理过渡、试管 喂养和其他维持生命的治疗，通常是由一种必须提供技术的文化驱动的 对非常虚弱的老年人进行积极的或徒劳的医疗护理。这些家庭成员经历了相当大的 他们面临临终决策后的负面心理健康后遗症。为了解决这些差距，我们将 适应和试行有效的ACP干预，SPIRE(将患者的病情陈述分享到 增加信任)，对轻度AD患者和他们的代理人(NIH阶段I行为干预 发展)，以促进公开、诚实的讨论，同时有可能讨论临终关怀。 我们的目标是为轻度AD患者提供一种有效的、可最大限度地实施的ACP干预 以及他们的代理人。具体目标1是使SPIRIT(亲自)适应轻度AD患者及其 通过使用利益相关者(患者、家人)进行修改-预测试-细化的过程进行替代 护理人员和临床医生)和专家，包括调整分娩模式以适应基于网络的交互式 视频会议(SPIRIT远程)。具体目标2是，在有120名患者-代理二元体的3组随机对照试验中， 评价精神面对面和精神远程性的可行性和可接受性，以及它们的初步效果 与通常关注的临终决策的准备结果(目标的二元性一致)相比 护理、患者决策冲突和替代决策信心)在干预后不久。我们 还将评估精神--面对面和精神--是否会导致患者的 干预后1年的意愿，并在1年后访问代孕者的样本，以评估所感知的 干预条件的影响(次要目标)。初步疗效数据将使用MIXED进行分析 影响回归模型。定性分析将使用内容和主题技术。本阶段一 行为干预开发精神试验将产生新的见解，以填补关键空白 关于如何改善轻度AD患者的ACP的知识，这些患者将进展到 这种疾病在可预见的未来。