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

改善对没有明显预先指示或代理人的无行为能力患者的道德护理 (INEADS)

• 批准号: 10248503
• 负责人: Bevin Cohen
• 金额: $ 20.72万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-08-28 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10248503
• 关键词: Address; Adult; Advance Directives; Advocate; American; Area; Belief; Bioethics; Caring; Characteristics; Clinical; Communities; Complex; Data; Databases; Decision Making; Development; Diagnosis; Education; Electronic Health Record; Ethics; Evaluation; Event; Family; Focus Groups; Friends; Geriatrics; Goals; Health Personnel; Healthcare; Home Care Services; Hospital Ethics; Hospitalization; Hospitals; Human Resources; Independent Living; Institutional Policy; Intervention Studies; Interview; Knowledge; Literature; Measures; Medical; Medical Care Team; National Institute of Nursing Research; Natural Language Processing; Palliative Care; Patient Care; Patient Preferences; Patients; Pilot Projects; Policies; Population; Positioning Attribute; Prevalence; Procedures; Process; Proxy; Publishing; Recommendation; Research; Risk; Sampling; Societies; Standardization; Statutes and Laws; Strategic Planning; Testing; TimeLine; Update; Voice; Work; acute care; base; care preference; clinical decision-making; cohort; court; design; end of life; end of life care; experience; family support; high risk; improved; patient population; preference; prevent; programs; social; structured data; surrogate decision maker

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.

大多数美国人没有预先指示或指定代理人来指导他们的医疗护理 即使他们失去了自己做决定的能力，医疗团队有时也能做出决定。 识别“默认”代理人，即可以提供有关患者价值观信息的家人或朋友， 然而，越来越多的患者变得丧失决策能力。 没有任何预先指示、指定代理人或默认代理人，这使他们很容易受到 接受不符合这些原则的护理目前几乎没有数据描述其患病率。 没有明显的预先指示或代理人 (INEADS) 的无行为能力患者的数量或临床情况如何 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) INEADS 成年人的患病率和特征是什么 或有成为 INEADS 的风险，以及 (1b) 目前如何为以下患者做出临床决策： 为此，我们将回顾性审查来自急性护理数据库的电子健康记录。 约 40,000 例住院治疗以及包含约 89,000 名社区居民患者的家庭医疗保健数据库 结合结构化数据、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 INEADS 和有可能成为 INEADS 的患者的患病率是多少？ (ii) 涉及的医院和社区人员及政策有哪些， (iii) 患者特征和诊断如何影响决策，以及 (iv) 制定决策的时间表是什么 决策以及决策如何迅速达成？ 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) 与医院和社区医疗保健提供者进行焦点小组讨论， 医院道德委员会，以及 (2) 对有成为 INEADS 风险的社区居民患者进行访谈。 要探讨的示例问题包括 (i) 形式化和规范化的障碍和促进因素是什么？ 标准化 INEADS 患者的临床决策过程，以及 (ii) 存在哪些障碍和 协助者完成预先指示并为高危患者设计代理决策者 成为INEADS？ 该项目的长期目标是为脆弱的 INEADS 患者提供合乎道德的护理， 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。 研究旨在增加有风险的患者的预先指示完成和代理人指定 INEADS，(2) 正式决策过程的开发、实施和评估 INEADS 患者，以及 (3) 设计、实施和测试有关护理最佳实践的临床医生教育 INEADS 患者和有成为 INEADS 风险的患者。