Engaging underserved communities in end-of-life conversations: a cluster, randomized controlled trial

许多黑人/非裔美国人和西班牙裔/拉丁裔患者更有可能接受低质量的临终关怀 终生医疗照护--事实上，他们死后死亡的可能性是白人的3倍 长期住在重症监护室。提前护理计划(ACP)--与患者讨论个人意愿的过程 亲人和临床医生，然后将他们记录在预先指令(AD)中-可以帮助减少这些 防止昂贵/负担沉重的治疗不太可能减少痛苦或改善的健康不平等现象 生活质量。虽然约60%的美国人参与了ACP，但25%的未得到充分服务的人口已经这样做了 很大程度上是因为对医疗保健系统/临床医生的不信任，以及不愿讨论死亡和死亡。这 研究利用服务不足的社区现有的、受信任的社交网络来部署两个基于社区的 ACP干预并研究其作用机制。通过确定哪些干预措施增加 在服务不足的社区参与ACP(以及为什么)，该项目将有助于提高临终关怀的质量 护理，减少不必要的痛苦，以及节约公共卫生资源的临终医疗费用。 在过去的5年里，我们的团队研究了一款名为Hello的廉价且易于扩展的严肃游戏 这引发了人们对敏感的生命终结问题的讨论。在多项研究中，参与者报告说，玩游戏 Hello是令人愉快的、让人大开眼界和鼓舞人心的-98%的参与者随后至少执行了一次ACP 行为。最近，我们开发了一个全国性的基于社区的“Hello”交付模式，并确认了 游戏的可接受性，通过让53个未得到充分服务的社区参与非加太项目(n=1,165)。我们现在提议3- 在不同的、服务不足的人群中进行武装、整群、随机对照试验(RCT)，以比较 《Hello》(第1组)在全国推广的结构化练习册《The Conversation Project Starter》的功效 Kit‘(第2组)和一个非ACP游戏’桌子主题‘(安慰剂/注意力控制；第3组)。我们会 对全美75个服务不足的社区(20个参与者/站点；n=1,500)进行随机调查。主要结果是 是目测验证的AD的完成；次要结果包括其他ACP行为的表现。 这项研究将通过以下几个方面提供关键的科学进展：1)提供两种广泛使用的和容易的 可扩展但尚不是循证干预；2)通过以下方式推动干预设计的科学 审查干预措施的潜在行动机制(即沟通质量和社会责任) 文化环境)；以及3)评估我们的基于社区的交付模式如何以及为什么参与 非加太地区服务不足的社区。如果RCT的结果是否定的，我们仍然会获得一个强有力的 了解社会文化环境在人口健康研究中的作用。如果成功，这个项目 将提供一个基于证据的模式，让未得到充分服务的社区参与到机场核心计划中来，同时还将提供一个强大的 了解如何设计和实施与其他人口健康相关的社区倡议- 为未得到充分服务的人提供基础研究或倡议。

Many Black/African Americans and Hispanic/Latinx patients are much more likely to receive low quality end-of- life medical care than White individuals– in fact, they are 3 times more likely than white Americans to die after a lengthy intensive care unit stay. Advance care planning (ACP)– the process of discussing one’s wishes with loved ones and clinicians, and then documenting them in an advance directive (AD)– can help reduce these health inequities by preventing costly/burdensome treatments that are unlikely to reduce suffering or improve quality of life. Though ~60% of Americans engage in ACP, <25% of underserved populations have done so– in large part due to distrust of the healthcare system/clinicians, and reluctance to discuss death and dying. This study harnesses underserved communities’ existing, trusted social networks to deploy two community-based ACP interventions and study their mechanisms of action. By identifying which interventions increase engagement in ACP in underserved communities (and why), this project will help improve quality of end-of-life care, reduce unnecessary suffering, and end-of-life healthcare costs which conserves public health resources. Over the past 5 years, our team has studied an inexpensive and readily scalable serious game called Hello that prompts discussion of sensitive end-of-life issues. Across multiple studies, participants report that playing Hello is enjoyable, eye-opening, and motivating —98% of participants subsequently performed at least 1 ACP behavior. Recently, we developed a nationwide community-based delivery model for ‘Hello’ and confirmed the game’s acceptability by engaging 53 underserved communities in ACP (n=1,165). We now propose a 3- armed, cluster, randomized controlled trial (RCT) in diverse, underserved populations to compare the efficacy of ‘Hello’ (Group 1) with a nationally promoted structured workbook ‘The Conversation Project Starter Kit,’ (Group 2), and a non-ACP game called ‘Table Topics,’ (placebo/attention control; Group 3). We will randomize 75 underserved communities across the US (20 participants/site; n=1,500). The primary outcome is completion of a visually verified AD; secondary outcomes include performance of other ACP behaviors. This study will provide key scientific advancements by: 1) providing efficacy data on two widely used and easily scalable but not yet evidence-based interventions; 2) advancing the science of interventional design by examining the interventions’ potential mechanisms of action (i.e. quality of communication, and role of socio- cultural environment); and 3) assessing how and why our community-based delivery model engages underserved communities in ACP. Should the RCT have negative findings, we still will have gained a robust understanding of the sociocultural environment’s role in population health research. If successful, this project will provide an evidence-based model for engaging underserved communities in ACP, along with a robust understanding of how to design and deliver community-based initiatives relevant for other population health- based research or initiatives for the underserved.