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.

为轻度阿尔茨海默氏病的临终决策做准备 抽象的 阿尔茨海默氏病（AD）是死亡的主要原因，在美国影响超过500万人的广告不能是 有效预防或治愈。对于那些有高级广告的人，密集或繁重的临终护理是 常见的。将近41％的人接受至少一项强化干预措施（例如，管道喂养，机械通气） 生命的最后三个月，可能会延长寿命，但不能解决死亡的生活质量或垂死的质量。人们在 鼓励广告的早期阶段参与预先护理计划（ACP），而它们仍然有能力 任命一个替代决策者，并有意义地与代理人进行ACP讨论。然而 诊断后，只有少数患有早期认知障碍的老年人从事ACP。失败 在机会之窗关闭之前（即失去决策能力之前）参与ACP 严重的不利后果；家庭成员应决定有关护理过渡，管的决定 喂养和其他维持生命的治疗，通常是由技术势在必行的文化驱动的 对老年人的积极或徒劳的医疗保健。这些家庭成员经历了相当大的 负面的心理健康后遗症面对临终决策。为了解决这些差距，我们将 适应和飞行员测试有效的ACP干预，精神（将患者的疾病表示为 提高信任），患有轻度AD及其代理患者（NIH I期行为干预 开发）可以促进开放，诚实的讨论，而有关寿命终止护理的这种讨论是可能的。 我们的目标是为轻度AD患者生产有效且最大的ACP干预措施 和他们的代孕。特定目的1是亲自调整精神，以靶向轻度AD及其的患者 通过使用利益相关者（患者，家族的修改原始进行修改的过程）进行替代 护理人员和临床医生）和专家，包括将交付模式调整为基于互动的网络 视频会议（Spirit-Remote）。特定目标2是在具有120个患者 - 卷酸酯二元组的3组RCT中 评估精神面对面和精神造物的可行性和可接受性及其初步功效 与对临终决策结束的准备成果的平常护理相比 干预后不久，护理，患者决定性冲突和替代决策信心）。我们 还将评估精神上的人和精神象征是否会导致患者的体现 干预后1年以愿望，并在1年时采访了代理人样本，以评估所感知到的 干预条件的影响（次要目的）。初步疗效数据将使用混合 效果回归模型。定性分析将使用内容和主题技术。这个阶段I。 精神的行为干预发展试验将产生新颖的见解，以填补关键的空白 有关如何改善温和广告的人的ACP知识，他们将进入高级阶段 该疾病在可预见的未来。