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

描述（由申请人提供）：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，但并不能逆转或治愈这种疾病。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道德标准，但家属报告说，沟通、决策和姑息治疗的质量很差。与决定使用或不使用治疗相比，护理目标方法鼓励就医疗护理的主要目标进行讨论和达成一致，然后做出旨在实现商定目标的治疗决定。该研究是一项集群随机对照试验，旨在测试考虑晚期痴呆症护理目标的代理人的决策支持干预。干预有两个组成部分：视听决策辅助，随后是结构化的跨学科护理计划会议。研究对象是从20个地点招募的300名患有晚期痴呆症的养老院居民及其代理人，以达到这些目的：目的1。为了检验护理目标决策支持干预与注意控制相比对沟通和决策质量的影响，在随访3个月时定义为a)沟通质量；B)代理-卫生保健提供者对护理目标的一致性；c)符合住院医师意愿的代理治疗报告。目标2。为了测试干预对晚期痴呆患者姑息治疗质量的影响，在6个月的随访中定义为：a)在护理计划中为居民提供的姑息治疗领域的数量；B)症状管理；c)对晚期痴呆症护理的替代满意度。目标3。为了测试干预对晚期痴呆居民死亡质量的影响，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，以及b)居民对死亡的舒适度。本研究将为痴呆症护理框架的目标提供首次实证检验。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。为了便于传播，干预设计是务实的，并与养老院的跨学科护理相结合。

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.