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.

了解和尊重老年人的临终治疗偏好 阿尔茨海默氏病和相关痴呆症 项目摘要/摘要 认知障碍在生命的尽头非常普遍。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能导致 经常住院和情况需要决定积极和潜在的腐蚀 不太可能改善这些患者的生存或生活质量的治疗方法。因为认知 损害经常排除这些患者参加有关他们的护理，替代的决定 决策者必须经常快速做出决定，并提供有关亲人的信息有限的信息 偏好。尽管提前指令与认知上不太积极的护理有关 受损的患者，只有少数认知受损的老年人准备这些文件。扩展的使用 预先护理计划（ACP）被视为改善寿命终止护理质量的潜在方法，但 仍然存在问题的数量。目前尚不清楚认知功能是否影响治疗偏好，如何 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构架 治疗选择会影响替代决策。 在这个项目中，一个跨学科团队，包括具有经济学专业知识，卫生政策专业知识的研究人员， 生物伦理学，重症监护，心理健康和护士针对三个目标。前两个分析了新的 在健康和退休研究受访者中收集的现有调查数据，并决定进行1-测试 决策者特征和书面或口头指示是否影响决策 目前是为阿尔茨海默氏病和阿尔茨海默氏病与痴呆症相关的患者制造的 （AD/ADRD）; 2-描述认知障碍，临终治疗偏好之间的关系， 和预先护理计划（ACP）。 AIM 1和2告知AIM 3-进行在线实验，以测试如何 美国成年人认为代孕决策者应该为AD/ADRD的人做出的选择 随患者偏好和高级护理计划的特征而变化。 这项研究的发现将解决有关广告/ADRD的预先护理计划的证据差距。 NIA/NINR的资金机会“改善了与阿尔茨海默氏症患者的护理质量和生活质量 疾病和相关痴呆症在生命的尽头，”国家计划中的优先事项 阿尔茨海默氏病。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允许家庭的文件， 朋友和临床医生在发病后以患者的最大利益行事。调查结果也可以告知 当ACP可能不再适用或未完成的决策。