Improving Ethical Care for Patients who are Incapacitated with No Evident Advance Directives or Surrogates (INEADS)

大多数美国人没有预先指示或指定的代理人来指导他们的医疗护理， 他们失去了为自己做决定的能力。医疗团队有时能够 为了识别“默认”代理，即，可以提供患者价值观信息的家人或朋友， 目标、偏好和信念。然而，越来越多的患者变得决策能力丧失， 没有任何预先指示，指定的代理人，或默认的代理人，这使得他们容易受到 接受与这些原则不一致的护理。目前，几乎没有数据描述 无明显预先指令或替代品（INEADS）或临床 决定是为他们做的。拟议的研究将通过两个具体目标解决这一差距。 在目标1中，我们将确定（1a）成人INEADS的患病率和特征 或有成为INEADS的风险，以及（1b）目前如何为 INEADS。为此，我们将回顾性地审查来自急性护理数据库的电子健康记录， 约40，000例住院病例和约89，000例社区居住患者的家庭医疗保健数据库， 结构化数据、自然语言处理和内容分析的组合，以回答以下问题 问题：（i）目前为INEADS且有成为INEADS风险的患者的患病率 急性护理和家庭护理环境;（二）谁是医院和社区人员和政策涉及， (iii)患者的特征和诊断如何影响决策，以及（iv）做出决策的时间轴是什么 决定，以及如何迅速作出决定？ 在目标2中，我们将从临床和患者的角度定性探讨INEADS现象。 为此，我们将开展：（1）与医院和社区医疗服务提供者的焦点小组， 医院伦理委员会，和（2）与社区居民的病人在成为INEADS的风险访谈。 有待探讨的问题包括：（一）在正式确定和 标准化INEADS患者的临床决策过程，以及（ii）障碍和 协助完成预先指示并在风险患者中指定代理决策者 成为INEADS？ 该项目的长期目标是为脆弱的INEADS患者提供道德关怀， 与他们的目标和偏好一致。从该试点中获得的知识将为（1）干预提供信息 研究，以增加提前指令完成和替代指定的患者中的风险成为 INEADS，（2）制定、实施和评估正式的决策过程， INEADS患者，以及（3）设计，交付和测试临床医生教育的最佳做法，照顾 INEADS患者和有成为INEADS风险的患者。

Most Americans do not have advance directives or appointed surrogates to guide their medical care in the event that they lose the capacity to make decisions for themselves. Healthcare teams are sometimes able to identify “default” surrogates, i.e., family or friends who can provide information about the patient's values, goals, preferences, and beliefs. However, a growing number of patients become decisionally incapacitated without any advance directives, appointed surrogates, or default surrogates, which leaves them vulnerable to receiving care that is unaligned with these tenets. Currently there is almost no data describing the prevalence of patients who are Incapacitated with No Evident Advance Directives or Surrogates (INEADS) or how clinical decisions are made for them. The proposed study will address this gap with two specific aims. In Aim 1 we will determine (1a) what are the prevalence and characteristics of adults who are INEADS or at risk of becoming INEADS, and (1b) how clinical decisions are currently made for patients who are INEADS. For this aim we will retrospectively review electronic health records from an acute care database of ~40,000 hospitalizations and a home healthcare care database of ~89,000 community dwelling patients using a combination of structured data, natural language processing, and content analysis to answer the following questions: (i) What is the prevalence of patients who are currently INEADS and at risk of becoming INEADS in acute care and homecare settings; (ii) Who are the hospital and community personnel and policies involved, (iii) How do patient characteristics and diagnoses influence decisions, and (iv) What is the timeline for making decisions and how expeditiously are decisions reached? In Aim 2 we will qualitatively explore the phenomenon of INEADS from clinical and patient perspectives. For this aim we will conduct: (1) focus groups with hospital- and community-based healthcare providers and hospital ethics boards, and (2) interviews with community-dwelling patients at risk of becoming INEADS. Sample questions to be explored include (i) What are the barriers and facilitators to formalizing and standardizing the clinical decision-making process for INEADS patients, and (ii) What are the barriers and facilitators to completing advance directives and designating surrogate decision makers among patients at risk of becoming INEADS? The long-term goal of this project is to provide vulnerable INEADS patients with ethical care that is concordant with their goals and preferences. Knowledge gained from this pilot will inform (1) an intervention study to increase advance directive completion and surrogate designation among patients at risk of becoming INEADS, (2) the development, implementation, and evaluation of formalized decision-making processes for INEADS patients, and (3) the design, delivery, and testing of clinician education on best practices for caring for INEADS patients and patients at risk of becoming INEADS.