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

理解和尊重老年人的临终治疗偏好 阿尔茨海默病及相关痴呆 项目总结/摘要 认知障碍在生命的尽头非常常见。认知障碍通常与 身体健康状况以及痴呆症和其他慢性病的临床进展可能导致 频繁住院，以及需要对攻击性和潜在负担做出决定的情况 不太可能改善这些患者的生存率或生活质量的治疗。因为认知 这种损害常常使这些病人无法参与有关他们的护理、替代治疗、 决策者往往必须迅速作出决定，并与有限的信息，他们所爱的人， 喜好尽管预先指令与认知上的不那么积极的护理有关， 虽然这些文件是由认知功能受损的老年人准备的，但只有少数认知功能受损的老年人准备这些文件。扩大使用 先进的护理计划（ACP）被视为提高临终关怀质量的潜在途径，但 还有一些问题。目前还不清楚认知功能是否会影响治疗偏好， 代理决策者查看治疗方案，他们如何使用偏好信息，以及是否框架 治疗方案的选择会影响替代决策。 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、危重病护理、心理健康和护理涉及三个目标。前两个分析新的和 在健康和退休研究受访者和1- Test死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氏病和阿尔茨海默氏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， 先进护理计划（ACP）根据目标1和2，目标3-进行在线实验，以测试如何 美国成年人认为代理决策者应该为AD/ADRD患者做出的选择 根据患者的偏好和高级护理计划的特点而变化。 这项研究的结果将解决在AD/ADRD的提前护理计划方面的证据差距， NIA/NINR资助机会“提高阿尔茨海默氏症患者的护理质量和生活质量 疾病和相关痴呆症”，以及《国家应对 老年痴呆症这项研究的结果可以帮助设计干预措施，以增加 参与预先护理计划的患者进行对话或准备文件， 朋友和临床医生在痴呆症发作后为患者的最佳利益采取行动。调查结果也可以告知 当ACP可能不再适用或尚未完成时，进行决策。

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.