The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: a systematic review and critical discussion
Please note: this is a legacy publication from CPEC (formely PSSRU at LSE).Journal of Pain and Symptom Management
Available online: 4 August 2017
Abstract
Context End-of-life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value, and undertreatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end-of-life outcomes for people with dementia and their carers. Objective To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end-of-life outcomes for people with dementia and their carers. Methods Systematic searches of academic databases (CINAHL Plus with full text, PsycINFO, SocINDEX with full text, and PubMed) were conducted to identify research studies, published between January 2000–January 2017 and involving statistical methods, in which ACP is an intervention or independent variable, and in which end-of-life outcomes for people with dementia and/or their carers are reported. Results A total of 18 relevant studies were identified. Most found ACP to be associated with some improved end-of-life outcomes. Studies were predominantly, but not exclusively, from the U.S. and care home-based. Type of ACP and outcome measures varied. Quality was assessed using National Institute of Health and Care Excellence quality appraisal checklists. Over half of the studies were of moderate to high quality. Three were randomized controlled trials, two of which were low quality. Conclusion There is a need for more high-quality outcome studies, particularly using randomized designs to control for confounding. These need to be underpinned by sufficient development work and process evaluation to clarify the appropriateness of outcome measures, explore implementation issues and identify “active elements.”
Context End-of-life care for people with dementia can be poor, involving emergency hospital admissions, burdensome treatments of uncertain value, and undertreatment of pain and other symptoms. Advance care planning (ACP) is identified, in England and elsewhere, as a means of improving end-of-life outcomes for people with dementia and their carers. Objective To systematically and critically review empirical evidence concerning the effectiveness of ACP in improving end-of-life outcomes for people with dementia and their carers. Methods Systematic searches of academic databases (CINAHL Plus with full text, PsycINFO, SocINDEX with full text, and PubMed) were conducted to identify research studies, published between January 2000–January 2017 and involving statistical methods, in which ACP is an intervention or independent variable, and in which end-of-life outcomes for people with dementia and/or their carers are reported. Results A total of 18 relevant studies were identified. Most found ACP to be associated with some improved end-of-life outcomes. Studies were predominantly, but not exclusively, from the U.S. and care home-based. Type of ACP and outcome measures varied. Quality was assessed using National Institute of Health and Care Excellence quality appraisal checklists. Over half of the studies were of moderate to high quality. Three were randomized controlled trials, two of which were low quality. Conclusion There is a need for more high-quality outcome studies, particularly using randomized designs to control for confounding. These need to be underpinned by sufficient development work and process evaluation to clarify the appropriateness of outcome measures, explore implementation issues and identify “active elements.”