State of advance care planning research: A descriptive overview of systematic reviews

Abstract

Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches.ResultEighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.Significance of resultsDespite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps.

Paying attention to cultural context matters in advance care planning and palliative care

“…Advance care planning is repeatedly presented as a measure of successful end-of-life conversations, activity and interventions 6. However, there are major knowledge gaps about its initiation, timeliness, optimal content and impact because of low quality and fragmentation of the available evidence 2. What is interesting about this study is the specific examples of why cultural context matters.…”

“…Advance care planning is largely derived from Western countries,1 with a reliance on Western concepts of autonomy and decision making 2. Much advance care planning research is from the USA, UK and Europe,3 despite significant international cultural differences in the concept of autonomy and decision making 4 5.…”

“…Another example is the influence of family collective decision making (rather than the individual) in a patient’s decision-making process 1. This focus on recognising the differences in collective and individualistic decision making is debated elsewhere,2 5 illustrating the value of accounting for the cultural context of advance care planning discussions and decisions. The study also points out that a move to truth telling and supporting individual (rather than collective) decision making changes the patient–clinician relationship, meaning that communication skills education must adapt to that cultural context 1…”

Advance Care Planning in Healthcare Systems: A Literature Review and Call to Action

“…Most ACP research which has occurred since 2014, is low quality and tends to cover specific topics of palliative care interventions, decision-making, communication strategies, factors of implementation, effectiveness, and cost. [61] More research is needed on the holistic approach of interdisciplinary teams, impact of all stakeholders including payors and healthcare system administration, development of clinical care pathways, and the public health perspective of ACP. Higher quality studies are needed including randomized control trials and innovative strategies to approach a range of populations and cultures with ACP to address these current research gaps.…”

Eliciting and honouring end-of-life care preferences : a multiple methods study on place of death

“…Relevant articles identified during a review of systematic reviews (G. Jimenez et al, 2018aJimenez et al, , 2018b) that the doctoral candidate contributed to during her candidature were also included to provide a background on ACP, and to highlight the gaps in literature.…”