Understanding and Respecting End-of-Life Treatment Preferences Among Older Adults with Alzheimer's Disease and Related Dementias

老年患者对临终治疗偏好的理解和尊重 阿尔茨海默病与相关痴呆 项目摘要/摘要 认知障碍在生命接近尾声时非常常见。认知障碍通常与 身体健康状况以及痴呆症和其他慢性疾病的临床进展可导致 频繁住院和需要决定攻击性和潜在负担的情况 不太可能改善这些患者的生存或生活质量的治疗。因为认知 损害通常使这些患者不能参与有关他们的护理的决定，代孕 决策者通常必须迅速做出决定，而且对他们所爱的人的信息有限。 偏好。尽管提前指令与较少侵略性的认知护理有关 对于受损的患者，只有少数认知受损的老年人准备这些文件。扩展用途 提前护理计划(ACP)被视为提高临终关怀质量的潜在途径，但 许多问题仍然存在。目前尚不清楚认知功能是否会影响治疗偏好，如何影响 代理决策者查看治疗选项，他们如何使用偏好信息，以及是否制定 治疗选择会影响代孕决策。 在这个项目中，一个跨学科的团队，包括具有经济学、卫生政策、 生物伦理学、危重护理、心理健康和护理涉及三个目标。前两个分析了新的和 在健康和退休研究受访者和1-测试受试者中收集的现有调查数据 决策者的特征和书面或口头指示的存在是否影响决策 目前正在为阿尔茨海默病和阿尔茨海默病相关痴呆症患者制作 (AD/ADRD)；2--描述认知障碍、临终治疗偏好、 和高级护理计划(ACP)。在目标1和目标2的指导下，目标3-进行在线实验以测试 美国成年人认为代孕决策者应该为AD/ADRD患者做出的选择 根据患者的喜好和高级护理计划的特点而变化。 这项研究的结果将解决有关AD/ADRD提前护理计划的证据差距， NIA/NINR资助机会“改善阿尔茨海默病患者的护理质量和生活质量” 临终时的疾病和相关痴呆症“和国家计划中阐明的优先事项 阿尔茨海默氏症。这项研究的结果有助于设计干预措施，以增加 参与提前护理计划的患者进行对话或准备允许家人使用的文件， 朋友和临床医生在痴呆症发作后以患者的最佳利益行事。调查结果还可以让人们 在机场核心计划可能不再适用或尚未完成时的决策。

Understanding and Respecting End-of-Life Treatment Preferences Among Older Adults with Alzheimer's Disease and Related Dementias Project Summary/Abstract Cognitive impairment is extremely common near the end of life. Cognitive impairment often co-occurs with physical health conditions and the clinical progression of dementia and other chronic conditions can lead to frequent hospitalizations and situations requiring decisions about aggressive and potentially burdensome treatments that are unlikely to improve the survival or quality of life for these patients. Because cognitive impairment frequently precludes these patients from participating in decisions about their care, surrogate decision-makers must often make decisions quickly and with limited information about their loved ones' preferences. Although advance directives have been associated with less aggressive care for cognitively impaired patients, only a minority of cognitively impaired older adults prepare these documents. Expanded use of advance care planning (ACP) is viewed as a potential way of improving the quality of end-of-life care, but a number of questions remain. It is unclear whether cognitive functioning influences treatment preferences, how surrogate decision makers view treatment options, how they use preference information, and whether framing of treatment choices influences surrogate decision-making. In this project, an interdisciplinary team including researchers with expertise in economics, health policy, bioethics, critical care, mental health and nursing addresses three aims. The first two analyze new and existing survey data collected among Health and Retirement Study respondents and decedents to 1- Test whether decision-maker characteristics and the presence of written or oral directions influence the decisions currently being made for persons with Alzheimer's disease and Alzheimer's disease Related Dementias (AD/ADRD); 2- Describe the relationships between cognitive impairment, end-of-life treatment preferences, and advance care planning (ACP). Informed by Aims 1 and 2, aim 3- Conduct online experiments to test how the choices that American adults think surrogate decision-makers should make for persons with AD/ADRD vary with characteristics of patients' preferences and advanced care planning. Findings from this study will address evidence gaps around advance care planning for AD/ADRD highlighted in the NIA/NINR Funding Opportunity “Improving Quality of Care and Quality of Life for Persons with Alzheimer's Disease and Related Dementias at the End of Life,” and priorities articulated in the National Plan to Address Alzheimer's Disease. Results from this study can help to design interventions to increase the likelihood that a patient engaging in advance care planning has the conversations or prepares the documents that allow family, friends, and clinicians to act in a patient's best interest after dementia onset. Findings can also inform decision-making when ACP may no longer apply or was not completed.