Advance care planning for adults with a progressive condition approaching end of life or loss of mental capacity: a systematic mapping review of the evidence

Abstract

Background: Advance care planning (ACP) can be defined as a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. An ACP discussion might include an individual’s concerns and wishes, their important values or personal goals for care, their understanding about their illness and prognosis, preferences and wishes for types of care or treatment in the future and the availability of such treatment. Objective(s): To undertake a systematic mapping review of the evidence. It was not the aim of this work to extract, evaluate and synthesise findings from individual publications, rather it was to assess the methodological rigour and scope of the existing evidence. Participants: Adults with any progressive life-limiting condition approaching end of life or likelihood of loss of mental capacity at some time; or their family members and carers; or health and/or social care practitioners involved in delivering care and support to such adults. Interventions: Any form of intervention addressing ACP. Interventions solely addressing Advance Directives or Living Wills were excluded. Main outcome measures: Any relevant to effectiveness, cost-effectiveness or process and implementation. Data sources and study designs: Comprehensive searches were conducted to identify evidence syntheses, cost-effectiveness studies and recent primary studies. No language or geographical restrictions were applied. Review methods: An evidence map was constructed, descriptive statistics were produced for key characteristics. Ongoing reviews, and reviews that failed to meet minimum methodological criteria were referenced. Results: We included 76 evidence syntheses: 28 evaluating effectiveness, 37 process and implementation, 10 evaluating both, and one guideline. Three reviews of cost-effectiveness and nine primary studies were included. We identified 406 recent primary studies published between 2017 and October 2019.: Reviews encompassed a range of methodologies and included a diversity of study designs. There was significant variation in the methodological quality and clarity of reporting. Most reviews combined studies of patients with various conditions. Some reviews did focus on patients with specific conditions such as dementia, cancer, heart disease, or kidney disease. Most of the reviews included studies across a range of settings.: Reporting of patient-centred outcomes was sporadic, few reviews reported congruence between patient wishes and care received. Outcomes for carers or family members was often lacking. Many of the high quality, well reported reviews provided a clear commentary on the limitations of the included studies and made recommendations for future research to address these concerns. There was a lack of UK-based cost-effectiveness studies; identified studies were highly heterogeneous and had methodological limitations. Limitations: Despite comprehensive searches some potentially relevant studies may have been missed. Primary study summaries were based on information from the titles and abstracts only. It is unclear to what extent findings from reviews of studies conducted in other countries are generalisable to the UK. Conclusions: This systematic mapping review has identified a large number of existing reviews looking at the effectiveness, cost-effectiveness and process and implementation of ACP. The evidence is heterogeneous and of mixed methodological quality. There appear to be increasing numbers of primary studies and reviews, but currently these do not address the questions of interest to stakeholders. Recommendations for future research are discussed. Registration details: Research Registry unique identifying number: reviewregistry800 (https://www.researchregistry.com/browse-the-registry#registryofsystematicreviewsmeta-analyses/registryofsystematicreviewsmeta-analysesdetails/5e25c1ba4d5c41001713af47/) Funding details: National Institute of Health Research: Health Service and Delivery Research (project no.16/47/11)