What Clinicians and Researchers Should Know About the Evolving Field of Advance Care Planning: a Narrative Review

Abstract

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP’s evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of “clinically meaningful” ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients’ values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP’s continued evolution to better serve patients and their care partners.

Advance Care Planning in 2024 and Beyond—Hoping for Harmony Amidst Cacophony

“…Over the last half decade, a previously harmonious general consensus around benefits associated with advance care planning (ACP) has taken a quick turn into dissonance. ACP is a process that supports adults of any age and with any stage of illness to better understand and share their unique values, goals, and preferences for future medical care 1 and is currently beset by controversy. A landmark editorial by Morisson et al 2 published in 2021 highlighted escalating concerns about the limitations of ACP and concluded that "ACP does not improve end-of-life care" and "clinical and research communities should learn from the evidence…and proceed with different approaches for improving care for seriously ill patients."…”

“…Consequently, clinicians, researchers, policy makers, and patients and their families have been debating the ongoing role of ACP in provision of patientcentered and goal-concordant care. 1,3,4 These debates have centered on conceptual limitations to ACP, such as the limitations of using a static document to delineate evolving treatment preferences and the nonlinear nature of end-of-life care. Focus has shifted from explicit documentation of concrete preferences toward the designation of surrogates and promotion of shared decisionmaking, particularly ways to better prepare surrogates for "in the moment decision-making."…”

“…Focus has shifted from explicit documentation of concrete preferences toward the designation of surrogates and promotion of shared decisionmaking, particularly ways to better prepare surrogates for "in the moment decision-making." 1 Amidst these heated debates, the study by Colley et al 5 provides a promising new avenue for ACP. In brief, these pilot data suggest that relatively simple changes in perioperative workflow-a combination of patient-facing ACP embedded in the electronic health record (EHR), direct patient engagement by a nonclinician health care navigator, and improved documentation strategies-can yield markedly significant improvements with documentation of clinically meaningful ACP increasing from 15.2% to 72.9% for surgical patients.…”