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

轻度阿尔茨海默病患者临终决策的准备 摘要 阿尔茨海默病（AD）是死亡的主要原因，并且影响美国超过500万人。 有效地预防或治愈。对于那些患有晚期AD的人来说，密集或繁重的临终护理是 共同近41%的人至少接受了一次强化干预（例如，管饲、机械通气） 生命的最后3个月，这可能会延长生命，但不能解决生活质量或死亡质量。人 鼓励早期AD患者在仍有能力的情况下进行提前护理计划（ACP） 指定一名代理决策者，并与代理人有意义地参与ACP讨论。然而 只有少数患有早期认知障碍的老年人在诊断后参与ACP。故障 在机会之窗关闭之前（即在丧失决策能力之前）进行机场核心计划， 严重的不良后果;家庭成员被留下，以作出有关照顾过渡的决定，管 喂养和其他维持生命的治疗，通常是由技术必须提供的文化驱动的 积极或无效的医疗护理非常虚弱的老年人。这些家庭成员经历了相当多的 在他们面临生命终结的决定后，负面的心理健康后遗症。为了弥补这些差距，我们将 调整和试点测试一个有效的ACP干预，SPIRIT（分享病人的疾病表示， 增加信任），轻度AD患者及其代理人（NIH I期行为干预 发展），以促进开放，诚实的讨论，而这种讨论的临终关怀是可能的。 我们的目标是为轻度AD患者提供一种有效且最大限度可实施的ACP干预 和他们的代理人具体目标1是使SPIRIT（亲自）适应轻度AD目标患者及其 通过与利益相关者（患者、家属）的修改-预测试-细化过程， 护理人员和临床医生）和专家，包括将交付模式调整为基于网络的交互式 视频会议（SPIRIT远程）。具体目标2是，在一项包含120例患者-替代者二对的3组RCT中， 评估SPIRIT面对面和SPIRIT远程的可行性和可接受性，以及其初步疗效 与通常的护理相比，对临终决策的准备结果（目标的二元一致性 护理，病人的决策冲突，和代理决策的信心）干预后不久。我们 还将评估SPIRIT亲自和SPIRIT远程是否导致患者的实施例 干预后1年的愿望，并在1年时采访代理人样本，以评估 干预条件的影响（次要目标）。初步疗效数据将使用混合 影响回归模型。定性分析将使用内容和主题技术。这个阶段我 SPIRIT的行为干预开发试验将产生新的见解，以填补 关于如何改善轻度AD患者ACP的知识，这些患者将进展到晚期， 疾病在可预见的未来。

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.