Interventions to Improve Prognostic Understanding in Advanced Stages of Life-Limiting Illness: A Systematic Review

Context: Among patients with advanced life-limiting illness, an inaccurate understanding of prognosis is common and associated with negative outcomes. Recent years have seen an emergence of new interventions tested for their potential to improve prognostic understanding. However, this literature has yet to be synthesized. Objectives: To identify and characterize tested interventions, summarize intervention findings, and outline directions for future research. Methods: Systematic searches were conducted in five databases — PubMed/MEDLINE (NLM), EMBASE (Elsevier), CINAHL (EBSCO), PsycINFO (OVID), and Cochrane Central Register of Controlled Trials (Wiley) — to identify interventions evaluated within a randomized controlled design for their impact on prognostic understanding. Results: Of the 2354 initial articles, 12 were selected for final inclusion, representing nine unique interventions. Intervention types included decision aids accompanying medical consults, palliative care consultations, communication training for patients and physicians, and targeted discussions regarding prognosis and treatment decision making. Common components of interventions included provision of prognostic information, assistance with end-of-life care planning, and provision of decisional and emotional support during discussions. Most interventions were associated with some indication of improvement in prognostic understanding. However, even after intervention, inaccurate prognostic understanding was common, with 31–95 percent of patients in intervention groups exhibiting inaccurate perceptions of their prognosis. Conclusion: Prognostic understanding interventions hold the potential to improve patient understanding and thus informed decision making, but limitations exist. Future research should examine why many patients receiving intervention may continue to maintain inaccurate perceptions, and identify which intervention components can best enhance informed, value-consistent decision making.