Advance Care Planning in Serious Illness: A Narrative Review

William E. Rosa, Shigeko Izumi, Donald R. Sullivan, Joshua Lakin, Abby R. Rosenberg, Claire J. Creutzfeldt, Debbie Lafond, Jennifer Tjia, Valerie Cotter, Cara Wallace, Danetta E. Sloan, Dulce Maria Cruz-Oliver, Susan DeSanto-Madeya, Rachelle Bernacki, Thomas W. Leblanc, Andrew S. Epstein

Research output: Contribution to journalReview articlepeer-review

24 Scopus citations

Abstract

Context: Advance care planning (ACP) intends to support person-centered medical decision-making by eliciting patient preferences. Research has not identified significant associations between ACP and goal-concordant end-of-life care, leading to justified scientific debate regarding ACP utility. Objective: To delineate ACP's potential benefits and missed opportunities and identify an evidence-informed, clinically relevant path ahead for ACP in serious illness. Methods: We conducted a narrative review merging the best available ACP empirical data, grey literature, and emergent scholarly discourse using a snowball search of PubMed, Medline, and Google Scholar (2000–2022). Findings were informed by our team's interprofessional clinical and research expertise in serious illness care. Results: Early ACP practices were largely tied to mandated document completion, potentially failing to capture the holistic preferences of patients and surrogates. ACP models focused on serious illness communication rather than documentation show promising patient and clinician results. Ideally, ACP would lead to goal-concordant care even amid the unpredictability of serious illness trajectories. But ACP might also provide a false sense of security that patients’ wishes will be honored and revisited at end-of-life. An iterative, ‘building block’ framework to integrate ACP throughout serious illness is provided alongside clinical practice, research, and policy recommendations. Conclusions: We advocate a balanced approach to ACP, recognizing empirical deficits while acknowledging potential benefits and ethical imperatives (e.g., fostering clinician-patient trust and shared decision-making). We support prioritizing patient/surrogate-centered outcomes with more robust measures to account for interpersonal clinician-patient variables that likely inform ACP efficacy and may better evaluate information gleaned during serious illness encounters.

Original languageEnglish (US)
Pages (from-to)e63-e78
JournalJournal of Pain and Symptom Management
Volume65
Issue number1
DOIs
StatePublished - Jan 2023

Keywords

  • Advance care planning
  • advance directives
  • communication
  • end-of-life
  • goal-concordant care
  • palliative care
  • patient-centered care
  • serious illness

ASJC Scopus subject areas

  • General Nursing
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

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