Community-dwelling older people’s experiences of advance care planning with health care professionals: a qualitative systematic review

Abstract

Objective: The objective of this review is to examine community-dwelling older people’s experiences of advance care planning with health care professionals. Introduction: The importance of health care professionals initiating advance care planning for patients has been reported; however, because of the shift from institutionalized to community care, community-dwelling older people have fewer opportunities to discuss these plans with health care professionals compared with those living in other settings. The timely initiation of advance care planning and sustainable discussions among older people, their families, and community health care professionals is necessary and may improve palliative and end-of-life care. Inclusion criteria: Studies with participants aged 60 years and older who have experience with advance care planning and live in their own homes in the community were included. We considered qualitative studies and the qualitative component of mixed methods studies published between January 1999 and April 2023 in English or Japanese. Methods: MEDLINE, CINAHL, Embase, PsycINFO, JSTORE, Scopus, Japan Medical Abstract Society, and CiNii were searched for published papers, and Google Scholar, ProQuest Dissertations and Theses Global, and MedNar were searched for unpublished papers and gray literature. Study selection, critical appraisal, data extraction, and data synthesis were conducted by 2 independent reviewers using the JBI approach and JBI standardized tools. Findings were pooled using a meta-aggregation approach. The synthesized findings were graded using the ConQual approach for establishing confidence in the output of qualitative research syntheses and presented in a Summary of Findings. Results: Five studies published between 2017 and 2022 were included in the review. Each study’s total score was between 6 and 8 out of 10 on the JBI critical appraisal checklist for qualitative research. We extracted 28 findings and aggregated them into 7 categories, generating 3 synthesized findings: i) A trusting relationship with health professionals is essential for older people’s decision-making. Health professionals’ attitudes, knowledge, and skills play a role in this, influencing the perceived quality of care; ii) Shared decision-making and patient-centered communication are essential. Older people feel ambiguity toward end-of-life decision and advance care planning and they want their wishes to be heard in any situation to maintain their autonomy and quality of life; iii) Older people need the appropriate forms and accessible and coordinated care to begin advance care planning. Conclusion: Qualitative studies on community-dwelling older people’s experiences of advance care planning with health care professionals are scarce. The experiences have illustrated that trusting relationships influence people’s perception of the quality of care they receive; there is uncertainty about their future; and they have varying feelings or attitudes toward their impending death, including denial and avoidance. This review highlighted the need for appropriate forms, and accessible and coordinated care to begin advance care planning; thus, an approach that meets the individual’s health and psychosocial status should be selected carefully. Further research is recommended to include older populations from broader geographical and cultural backgrounds and to assess and evaluate the different advance care planning approaches and their implementation processes among groups of community-dwelling older people with different health and psychosocial statuses. Review registration: PROSPERO CRD42020122803