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Cited by 96Palliative Care and End-of-Life IssuesEthics and bioethics in healthcareEthics in medical practice

The DOI matches its Crossref record; 48 of the 48 references it cites were found in a registry or an index.

Family decision‐making in advanced dementia: narrative and ethics

Elliott, Barbara A., Gessert, Charles E., Peden‐McAlpine, Cynthia·2009·Scandinavian Journal of Caring Sciences
DOI 10.1111/j.1471-6712.2008.00613.x
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Abstract

Background: Traditionally, family members become decision‐makers for ageing parents with cognitive impairment. Our understanding of how families negotiate the ethical issues in this decision‐making is still developing. Aim: To describe and understand the ethical thinking used in end‐of‐life decision‐making by family surrogates on behalf of their cognitively impaired elders. Methods: Qualitative research with eight focus groups that included 39 family members of severely impaired nursing home residents in Minnesota. Transcripts were analysed using a thematic approach. Findings: The family surrogates described their decision‐making as a process based in the families’ stories and as extensions of the elders’ identities. Four themes emerged from the analysis of the families’ decision‐making: (i) acquisition of decision‐making authority, (ii) decision‐making for short‐term or long‐term time frames, (iii) justifying the decisions and (iv) advocacy for the elders. Conclusions: The families in these focus groups used the elders’ life stories to frame their decisions for care. Providers working in primary care settings who work with families in making care decisions for cognitively impaired elderly patients may find narrative ethics more pertinent than principle‐based ethics in understanding families’ perspectives and priorities, while also recognizing their decision‐making transition from using the principle of autonomy to that of beneficence.

Overview

Integrity signals

Registry

Crossref · 10.1111/j.1471-6712.2008.00613.x

Cites

48 of 48 references verified0 citation errors · 0 not checkable

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Verification

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Citations

Cites

Research works printed but not linked: 2

  1. 10.1177/019394590002200308 · DOI · Paper page
  2. Brody H, 1987, Stories of Sickness

Cited by

See all 96

Metadata

Authors
Elliott, B. A., Gessert, C. E., & Peden‐McAlpine, C.
Affiliations
University of Minnesota (US)
ORCID
Peden‐McAlpine, Cynthia
Venue
Scandinavian Journal of Caring Sciences
Publisher
Wiley
Published
2009-05-07
Volume
23
Issue
2
Pages
251-258
ISSN
  • 0283-9318 (ISSN-L)
  • 1471-6712
DOI
10.1111/j.1471-6712.2008.00613.x
OpenAlex
W2005411271
Cited by
96
References
48
Citations by year
2026: 1 · 2025: 1 · 2024: 5 · 2023: 2 · 2022: 6 · 2021: 8 · 2020: 8 · 2019: 7 · 2018: 7 · 2017: 4 · 2016: 5 · 2015: 10 · 2014: 7 · 2013: 4 · 2012: 10
FWCI
7.05
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Scandinavian Journal of Caring Sciences (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • National Institutes of Health (1r03ag021214-01)
  • National Institute on Aging (R03 AG21214-01)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Health Professions › General Health Professions › Ethics in medical practice
Keywords
family decision-making, advanced dementia, end-of-life decisions, narrative ethics, life stories, nursing home residents, cognitive impairment in older adults, decision-making power, advocacy, principle-based ethics
MeSH terms
Aged, Aged, 80 and over, Anecdotes as Topic, Decision Making, Dementia, Family, Female, Humans, Male, Minnesota, Focus Groups, Terminally Ill, Proxy

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Data sources

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Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).

Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.