Evidence map›Paper›PMID 40839070›Full record

ArticleThe journals of gerontology. Series B, Psychological sciences and social sciences2025

Advance care planning with people living with dementia: ethical considerations of physicians in the United States and the Netherlands.

Jingyuan Xu 须静媛, David R Mehr, Marieke Perry, K Taylor Bosworth, Kate McGough, Wilco P Achterberg, Hanneke Smaling, Jenny T van der Steen

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Article in The journals of gerontology. Series B, Psychological sciences and social sciences, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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0cells of the map it votes in
1citing papers in PubMed
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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

8 authors.

Jingyuan Xu 须静媛Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-6906-2248
David R MehrDepartment of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States.
Marieke PerryDepartment of Geriatrics, Radboud University Medical Center, Nijmegen, The Netherlands.
K Taylor BosworthDepartment of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States.
Kate McGoughDepartment of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States.
Wilco P AchterbergDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0001-9227-7135
Hanneke SmalingDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.
Jenny T van der SteenDepartment of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.ORCID 0000-0002-9063-7501

Funding

European Research Council
6 · The paper itself

Abstract

objectivesAdvance care planning (ACP) is important but complex with people living with dementia. This study aims to explore ethical considerations of physicians around ACP for dementia in two high-income countries (the United States and the Netherlands).

methodsIn this qualitative study, semistructured interviews were conducted with Dutch and American physicians from specialties that provide end-of-life care for people with living dementia. Their considerations regarding ACP for people living with dementia were solicited after short animation video vignettes on two approaches to ACP, one focused on concrete treatment orders, and the other on setting global care goals. Interview transcripts were analyzed using thematic analysis with elements of reflexive thematic analysis to identify ethical considerations.

resultsInterviews with 50 Dutch physicians and 47 American physicians and 3 nurse practitioners generated three themes of ethical considerations: (1) Respecting the autonomy of the person with dementia, (2) Rationality as the basis for decisions and subsequent actions, and (3) Minimizing burden and suffering. DISCUSSION: The complexity of ACP for people living with dementia is reflected in the challenges within each ethical consideration and the tensions between them, especially between autonomy and rationality. We recommend an approach to ACP that balances the ethical considerations, focusing on the values of the people living with dementia and allowing flexibility in future decision-making to take the current best interest of the person into account.

Indexed as

Advance Care PlanningDementiaPhysiciansAdultAgedAttitude of Health PersonnelFemaleHumansMaleMiddle AgedNetherlandsPersonal AutonomyQualitative ResearchTerminal CareUnited StatesClinical decision-makingEthicsPalliative care

Identifiers

PMID40839070
PMCPMC12507472

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