Goals of Care: A Nursing Home Trial of Decision Support for Advanced Dementia

描述(申请人提供)：痴呆症是一种认知功能下降的进行性综合征。对于500万患有痴呆症的美国人来说，治疗方法减缓了病情的发展，但不能逆转或治愈疾病。养老院护理很常见；67%的痴呆症患者在这种情况下死亡。关于护理目标的共同决策是严重疾病的伦理标准，但家庭报告称，沟通、决策和姑息治疗的质量很差。与使用或停止治疗的决定相比，护理目标方法鼓励就医疗保健的主要目标进行讨论和达成一致，然后是为满足商定目标而设计的治疗决定。这项研究是一项整群随机对照试验，旨在测试针对考虑护理目标的晚期痴呆症代理人的决策支持干预。干预包括两个部分：视听决策辅助，随后是一次结构化的跨学科护理计划会议。研究对象是300名患有晚期痴呆症的养老院居民和他们的代理人，他们从20个地点招募，以达到这些目标：目的1.测试护理决策支持干预的目标与注意力控制对沟通和决策质量的影响，在3个月的随访中定义为a)沟通质量；b)代理-医疗保健提供者对护理目标的一致性；以及c)符合居民意愿的治疗的代理报告。目的2.测试干预对晚期痴呆症居民姑息治疗质量的影响，在6个月的随访中定义为a)护理计划中针对居民的姑息治疗领域的数量；b)症状管理；以及c)对晚期痴呆症护理的代理满意度。目的3.测试干预对晚期痴呆症患者死亡质量的影响，在死亡后测量a)代理-医疗保健提供者对护理目标的一致性，b)居民临终时的舒适度。这项研究将为痴呆症护理框架的目标提供第一个经验性测试。它将决策支持研究扩展到代理人，他们为患有严重和不治之症的患者做出大多数决定。为了允许传播，干预设计是务实的，并与疗养院跨学科护理很好地结合在一起。 公共卫生相关性：这项整群随机试验比较了注意力控制和护理决策支持干预的目标在沟通质量、护理质量和死亡质量方面的结果。这项试验将招募来自20家养老院的300名晚期痴呆症患者的代理决策者。

DESCRIPTION (provided by applicant): Dementia is a progressive syndrome of decline in cognitive function. For 5 million Americans with dementia, therapies slow progression but do not reverse or cure the disease. Nursing home care is common; 67% of people with dementia die in this setting. Shared decision-making about goals of care is the ethical standard for serious illness, yet families report poor quality communication, decision-making and palliative care. Compared with decisions about using or withholding a treatment, the goals of care approach encourages discussion and agreement on the primary goals of medical care, followed by treatment decisions designed to meet agreed upon goals. The study is a cluster randomized, controlled trial to test a decision support intervention for surrogates considering goals of care in advanced dementia. The intervention has two components: an audiovisual decision aid followed by a structured interdisciplinary care plan meeting. Study subjects are 300 nursing home residents with advanced dementia and their surrogates, recruited from 20 sites, to meet these Aims: Aim 1. To test the effect of the Goals of Care decision support intervention compared to an attention control on the quality of communication and decision-making, defined at 3 months follow-up as a) quality of communication; b) surrogate - health care provider concordance on goals of care; and c) surrogate report of treatment consistent with the resident's wishes. Aim 2. To test the effect of the intervention on quality of palliative care for residents with advanced dementia, defined at 6 months follow-up as a) number of palliative care domains addressed for the resident in the care plan; b) symptom management; and c) surrogate satisfaction with care for advanced dementia. Aim 3. To test the effect of the intervention on quality of dying for residents with advanced dementia, measured after death as a) surrogate - health care provider concordance on goals of care, and b) resident comfort in dying. This research will provide the first empiric test of the goals of care framework for dementia. It extends decision support research to surrogates, who make most decisions for patients with serious and incurable illness. To permit dissemination, the intervention design is pragmatic and well integrated with nursing home interdisciplinary care. PUBLIC HEALTH RELEVANCE: This cluster randomized trial compares an attention control to a Goals of Care decision support intervention on outcomes of quality of communication, quality of care and quality of dying. The trial will enroll 300 surrogate decision-makers for advanced dementia patients from 20 nursing homes.