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

了解并尊重患有阿尔茨海默病和相关痴呆症的老年人的临终治疗偏好

• 批准号: 10351907
• 负责人: Lauren Hersch Nicholas
• 金额: $ 49.53万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-02-13 至 2023-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10351907
• 关键词: Address; Adult; Advance Care Planning; Advance Directives; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Architecture; Bioethics; Caregivers; Caring; Cessation of life; Characteristics; Chronic; Classification; Clinical; Cognitive; Communication Tools; Critical Care; Data; Decision Making; Dementia; Dimensions; Documentation; Economics; Elderly; Family; Family member; Friends; Funding Opportunities; Goals; Health; Health Policy; Health and Retirement Study; Healthcare; Hospitalization; Impaired cognition; Intervention; Knowledge; Language; Lead; Life; Link; Medicare; Medicare claim; Minority; Nature; Oral; Patient Care; Patient Preferences; Patients; Persons; Policies; Provider; Psychiatric Nursing; Quality of Care; Quality of life; Reporting; Research; Research Personnel; Respondent; Role; Sampling; Series; Surveys; Testing; Visit; aged; behavioral economics; beneficiary; cognitive function; end of life; end of life care; experience; experimental study; improved; insight; interest; loved ones; member; physical conditioning; preference; public health relevance; surrogate decision maker; surrogate decision making; therapy design; treatment choice

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.

了解并尊重患有以下疾病的老年人的临终治疗偏好 阿尔茨海默病和相关痴呆症 项目概要/摘要 认知障碍在生命即将结束时极为常见。认知障碍通常与临终时同时发生。 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 频繁住院以及需要做出积极和潜在负担的决定的情况 因为认知治疗不太可能改善这些患者的生存或生活质量。 损害常常使这些患者无法参与有关他们的护理、代理人的决策 决策者通常必须在有关其亲人的信息有限的情况下快速做出决定 尽管预先指示与认知护理的积极性较低有关。 受损患者，只有少数认知受损的老年人准备这些文件 扩大使用。 提前护理计划（ACP）被视为提高临终护理质量的潜在方法，但 目前尚不清楚认知功能是否影响治疗偏好以及如何影响。 代理决策者看待治疗方案、他们如何使用偏好信息以及是否框架 治疗选择影响替代决策。 在这个项目中，一个跨学科团队包括具有经济学、卫生政策、 生物伦理学、重症监护、心理健康和护理解决三个目标。 在健康与退休研究受访者和死者中收集的现有调查数据进行 1- 测试 决策者的特征以及书面或口头指示是否会影响决策 目前正在为患有阿尔茨海默病和阿尔茨海默病相关痴呆症的患者制造 (AD/ADRD); ​​2-描述认知障碍、临终治疗偏好之间的关系， 目标 1 和 2、目标 3 - 进行在线实验以测试如何进行。 美国成年人认为代理决策者应该为 AD/ADRD 患者做出的选择 随患者偏好和高级护理计划的特征而变化。 这项研究的结果将解决 AD/ADRD 预先护理计划方面的证据差距，其中强调 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”以及国家解决计划中阐明的优先事项 这项研究的结果可以帮助设计干预措施，以增加患阿尔茨海默病的可能性。 参与预先护理计划的患者进行对话或准备允许家人、 痴呆症发作后，朋友和牧师应以患者的最大利益为重。调查结果也可以提供信息。 ACP 可能不再适用或未完成时的决策。