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

大多数美国人没有事先指示或指定代理人来指导他们的医疗保健 如果他们失去为自己做决定的能力。医疗团队有时能够 为了识别可以提供有关患者价值的信息的“默认”代理人，即，家人或朋友， 目标、偏好和信念。然而，越来越多的患者最终丧失了工作能力。 没有任何预先指示、指定的代理人或默认代理人，这使他们容易受到 接受与这些信条不一致的照顾。目前，几乎没有任何数据描述这种流行率。 没有明显的提前指令或代用品(在EADS中)或临床情况下丧失行为能力的患者 决定是为他们做的。拟议的研究将通过两个具体目标来解决这一差距。 在目标1中，我们将确定(1a)EADS成年人的患病率和特征是什么 或有患EADS的风险，以及(1b)目前是如何为以下患者做出临床决定的 在EADS中。为此，我们将回顾急性护理数据库中的电子健康记录。 约40,000次住院治疗和一个由约89,000名社区居民使用的家庭医疗保健数据库 结合使用结构化数据、自然语言处理和内容分析来回答以下问题 问题：(I)目前处于EADS并有可能成为EADS的患者在#年的患病率是多少 急诊护理和家庭护理环境；(2)谁是医院和社区人员以及所涉政策； (Iii)病人的特征和诊断对决策有何影响；及(Iv)作出决定的时间表为何 决策以及决策的速度有多快？ 在目标2中，我们将从临床和患者的角度定性地探讨inEADS现象。 为此，我们将：(1)与以医院和社区为基础的医疗保健提供者和 医院伦理委员会，以及(2)采访社区居住的有可能成为EADS的患者。 要探讨的样本问题包括：(I)正规化和 规范EADS患者的临床决策过程，以及(Ii)障碍和 在有风险的患者中完成预先指令和指定替代决策者的促进者 成为EADS中的一员？ 该项目的长期目标是为EADS中的弱势患者提供伦理关怀，即 与他们的目标和喜好保持一致。从该飞行员那里获得的知识将为(1)干预提供信息 一项研究，旨在增加有发病风险的患者提前完成指令和指定代孕对象 在EADS中，(2)正式决策过程的开发、实施和评估 在EADS患者中，以及(3)关于护理最佳实践的临床医生教育的设计、实施和测试 在EADS患者和有成为EADS风险的患者中。

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.