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早发性痴呆患者及其家庭照顾者讨论安乐死:对其考虑因素的定性分析。

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

机构信息

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

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

出版信息

Patient Educ Couns. 2023 Oct;115:107882. doi: 10.1016/j.pec.2023.107882. Epub 2023 Jul 12.

Abstract

OBJECTIVES

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.

METHODS

A secondary qualitative analysis on interviews with 10 Belgian people with young-onset dementia and 25 family caregivers, using constant comparative analysis.

RESULTS

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.

CONCLUSIONS

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.

PRACTICE IMPLICATIONS

Patient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis.

摘要

目的

研究表明,在讨论预先护理计划这一广泛主题时,患有早发性痴呆症的患者及其家庭照顾者会提出安乐死的话题。更好地了解人们关注的内容和原因,可以为医生协助死亡的发展态势提供信息。本研究旨在探讨患有早发性痴呆症的患者及其家庭照顾者在安乐死问题上表达的考虑因素。

方法

对 10 名比利时早发性痴呆症患者和 25 名家庭照顾者进行的访谈进行二次定性分析,采用恒定比较分析。

结果

受访者描述了类似的讨论安乐死的背景:这个话题大多是在家庭照顾者的陪同下,在“关键时刻”出现的,其动机是患者考虑到疾病进展对自己和亲人的影响。照顾者分享了对安乐死法的看法,并讨论了讨论安乐死的情绪影响。

结论

患有早发性痴呆症的患者对安乐死的考虑似乎源于个人,以及预期的人际和社会痛苦。与痴呆症和痴呆症护理相关的负面形象似乎影响了人们对未来的期望和思考。

实践意义

医患沟通应包括理清安乐死请求的动机,公开讨论恐惧,并反思预后。

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