Cultural Factors Influencing Advance Care Planning in Progressive, Incurable Disease: A Systematic Review With Narrative Synthesis

Context: Advance care planning (ACP) can improve end-of-life outcomes, but low uptake indicates it is less acceptable to patients of some cultural backgrounds.

Objectives: To explore how cultural factors influence ACP for patients with progressive, incurable disease and how ACP could be made cross-culturally appropriate.

Method: Systematic literature review using narrative synthesis. Protocol registered prospectively (PROSPERO CRD42017060441). Key words and subject headings of six databases (AMED, PsycINFO, Embase, Ovid MEDLINE, CINAHL, Cochrane) were searched without time restrictions. Eligible studies reported original research published in full that included adult participants with progressive, incurable disease or their formal or informal caregivers. Study quality was assessed using the Mixed Methods Appraisal Tool.

Results: 818 studies were screened. 27 were included: 20 quantitative, 4 qualitative and 3 mixed methods. Most (20/30) studies were conducted in the USA, where non-White ethnicity was associated with lower acceptability of formal, documented ACP processes. Cultural factors affecting ACP acceptability included religiosity, trust in the healthcare system, patient and clinician comfort discussing death, and patient attitudes regarding decision-making. Informal, communication-focused approaches to ACP appear more cross-culturally acceptable than formal processes. Clinician education in cultural-competence is recommended. Study limitations included use of un-validated tools and convenience samples, and lack of reflexivity.

Conclusion: Many interconnected cultural factors influence the acceptability of ACP in progressive, incurable disease, although specific mechanisms remain unclear. A communication-focused approach may be valuable in adapting ACP to meet the needs of culturally diverse populations.