End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

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Abstract

Objectives:

To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.

Methods:

A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.

Results:

The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers’ preferences for different types and amounts of information necessary to make decisions consistent with patients’ values.

Conclusion:

Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers’ decision making. More diverse samples are needed.

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Most cited references 31

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Where is the evidence? A systematic review of shared decision making and patient outcomes.

L. Shay, Jennifer Elston Lafata (2014)

Despite widespread advocacy for shared decision making (SDM), the empirical evidence regarding its effectiveness to improve patient outcomes has not been systematically reviewed. The purpose of this study was to systematically review the empirical evidence linking patient outcomes and SDM, when the decision-making process has been explicitly measured, and to identify under what measurement perspectives SDM is associated with which types of patient outcomes (affective-cognitive, behavioral, and health). PubMed (through December 2012) and hand search of article bibliographies. Studies were included if they empirically 1) measured SDM in the context of a patient-clinician interaction and 2) evaluated the relationship between SDM and at least 1 patient outcome. Study results were categorized by SDM measurement perspective (patient-reported, clinician-reported, or observer-rated) and outcome type (affective-cognitive, behavioral, or health). Thirty-nine studies met inclusion criteria. Thirty-three used patient-reported measures of SDM, 6 used observer-rated measures, and 2 used clinician-reported measures. Ninety-seven unique patient outcomes were assessed; 51% affective-cognitive, 28% behavioral, and 21% health. Only 43% of assessments (n = 42) found a significant and positive relationship between SDM and the patient outcome. This proportion varied by SDM measurement perspective and outcome category. It was found that 52% of outcomes assessed with patient-reported SDM were significant and positive, compared with 21% with observer-rated and 0% with clinician-reported SDM. Regardless of measurement perspective, SDM was most likely to be associated with affective-cognitive patient outcomes (54%), compared with 37% of behavioral and 25% of health outcomes. The relatively small number of studies precludes meta-analysis. Because the study inclusion and exclusion criteria required both an empirical measure of SDM and an assessment of the association between that measure and a patient outcome, most included studies were observational in design. SDM, when perceived by patients as occurring, tends to result in improved affective-cognitive outcomes. Evidence is lacking for the association between empirical measures of SDM and patient behavioral and health outcomes. © The Author(s) 2014.

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The accuracy of surrogate decision makers: a systematic review.

David Shalowitz, David Wendler, Elizabeth Catudio-Garrett (2006)

Clinicians currently rely on patient-designated and next-of-kin surrogates to make end-of-life treatment decisions for incapacitated patients. Surrogates are instructed to use the substituted judgment standard, which directs them to make the treatment decision that the patient would have made if he or she were capacitated. However, commentators have questioned the accuracy with which surrogates predict patients' treatment preferences. A systematic literature search was conducted using PubMed, the Cochrane Library, and manuscript references, to identify published studies that provide empirical data on how accurately surrogates predict patients' treatment preferences and on the efficacy of commonly proposed methods to improve surrogate accuracy. Two of us (D.I.S. and D.W.) reviewed all articles and extracted data on the hypothetical scenarios used to assess surrogate accuracy and the percentage of agreement between patients and surrogates. The search identified 16 eligible studies, involving 151 hypothetical scenarios and 2595 surrogate-patient pairs, which collectively analyzed 19 526 patient-surrogate paired responses. Overall, surrogates predicted patients' treatment preferences with 68% accuracy. Neither patient designation of surrogates nor prior discussion of patients' treatment preferences improved surrogates' predictive accuracy. Patient-designated and next-of-kin surrogates incorrectly predict patients' end-of-life treatment preferences in one third of cases. These data undermine the claim that reliance on surrogates is justified by their ability to predict incapacitated patients' treatment preferences. Future studies should assess whether other mechanisms might predict patients' end-of-life treatment preferences more accurately. Also, they should assess whether reliance on patient-designated and next-of-kin surrogates offers patients and/or their families benefits that are independent of the accuracy of surrogates' decisions.

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Improving decision-making for feeding options in advanced dementia: a randomized, controlled trial.

Christopher Carey, Nadia L. Mitchell, Belinda Lee … (2011)

To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Cluster randomized controlled trial. Twenty-four nursing homes in North Carolina. Residents with advanced dementia and feeding problems and their surrogates. Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Primary outcome was the Decisional Conflict Scale (range: 1-5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34). A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers. © 2011, Copyright the Authors Journal compilation © 2011, The American Geriatrics Society.

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Author and article information

Journal

Journal ID (nlm-ta): SAGE Open Med

Journal ID (iso-abbrev): SAGE Open Med

Journal ID (publisher-id): SMO

Journal ID (hwp): spsmo

Title: SAGE Open Medicine

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Electronic): 2050-3121

Publication date (Electronic): 21 May 2018

Publication date Collection: 2018

Volume: 6

Electronic Location Identifier: 2050312118777517

Affiliations

[1 ]School of Nursing, The University of Texas at Austin, Austin, TX, USA

[2 ]School of Information, The University of Texas at Austin, Austin, TX, USA

Author notes

[*]Bo Xie, School of Nursing, The University of Texas at Austin, 1710 Red River Street, Austin, TX 78712, USA. Email: boxie@ 123456utexas.edu

Author information

Bo Xie https://orcid.org/0000-0002-6016-6008

Article

Publisher ID: 10.1177_2050312118777517

DOI: 10.1177/2050312118777517

PMC ID: 5966844

SO-VID: 507ffeea-c5cb-4589-9f4c-2108abc999ee

License:

This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

History

Date received : 13 December 2017

Date accepted : 25 April 2018

Funding

Funded by: Population Health Initiative, The University of Texas at Austin, ;

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cover-date January-December 2018

Keywords: dementia,alzheimer’s,family caregivers,end-of-life,decision aids

Data availability:

Keywords: dementia, alzheimer’s, family caregivers, end-of-life, decision aids

End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

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Karger: Neurology and Neuroscience

Most cited references 31

Where is the evidence? A systematic review of shared decision making and patient outcomes.

The accuracy of surrogate decision makers: a systematic review.

Improving decision-making for feeding options in advanced dementia: a randomized, controlled trial.

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