People with young-onset dementia and their family caregivers discussing euthanasia: A qualitative analysis of their considerations.

Advance care planning Alzheimer's disease Euthanasie Family caregivers Patients Qualitative study Young-onset dementia

Journal

Patient education and counseling
ISSN: 1873-5134
Titre abrégé: Patient Educ Couns
Pays: Ireland
ID NLM: 8406280

Informations de publication

Date de publication:
10 2023
Historique:
received: 22 12 2022
revised: 27 06 2023
accepted: 03 07 2023
medline: 4 9 2023
pubmed: 25 7 2023
entrez: 24 7 2023
Statut: ppublish

Résumé

Research showed that people with young-onset dementia and their family caregivers raised the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may inform the evolving landscape of physician assisted dying. This study aimed to explore the considerations that people with young-onset dementia and their family caregivers expressed on euthanasia. A secondary qualitative analysis on interviews with 10 Belgian people with young-onset dementia and 25 family caregivers, using constant comparative analysis. Respondents described similar contexts in which euthanasia had been discussed: the topic arose at 'key' moments, mostly with family caregivers, and was motivated by patients considering the impact of disease progression for themselves and their loved-ones. Caregivers shared opinions on the euthanasia law and discussed the emotional impact of discussing euthanasia. Considerations of people with young-onset dementia towards euthanasia appear rooted in personal, as well as in anticipated interpersonal and societal suffering. The negative image associated with dementia and dementia care seemed to influence people's expectations for and thoughts on the future. Patient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis.

Identifiants

pubmed: 37487346
pii: S0738-3991(23)00262-8
doi: 10.1016/j.pec.2023.107882
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Pagination

107882

Informations de copyright

Copyright © 2023. Published by Elsevier B.V.

Déclaration de conflit d'intérêts

Declaration of Competing Interest None.

Auteurs

Romy Van Rickstal (R)

Vrije Universiteit Brussel (VUB) and Ghent University, End-of-Life Care Research Group, Brussels, Belgium; Fonds voor Wetenschappelijk Onderzoek-Vlaanderen, Brussels, Belgium. Electronic address: Romy.Van.Rickstal@vub.be.

Aline De Vleminck (A)

Vrije Universiteit Brussel (VUB) and Ghent University, End-of-Life Care Research Group, Brussels, Belgium; Fonds voor Wetenschappelijk Onderzoek-Vlaanderen, Brussels, Belgium.

Kenneth Chambaere (K)

Vrije Universiteit Brussel (VUB) and Ghent University, End-of-Life Care Research Group, Brussels, Belgium.

Lieve Van den Block (L)

Vrije Universiteit Brussel (VUB) and Ghent University, End-of-Life Care Research Group, Brussels, Belgium; Fonds voor Wetenschappelijk Onderzoek-Vlaanderen, Brussels, Belgium; Francqui Research Professor (2020 - 2023), Belgium.

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