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

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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.