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以色列家属照顾者对已故亲属生命终末期的遗憾。

Regrets of family caregivers in Israel about the end of life of deceased relatives.

机构信息

Minerva Center for Interdisciplinary Study of End of Life, Tel-Aviv University, Tel Aviv, Israel.

The Herczeg Institute on Aging, Tel-Aviv University, Tel Aviv, Israel.

出版信息

Aging Ment Health. 2021 Apr;25(4):720-727. doi: 10.1080/13607863.2019.1709154. Epub 2020 Jan 8.

Abstract

We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.

摘要

我们旨在澄清不同类型的遗憾或无悔的内容,以及在临终阶段协助亲属的家庭照顾者感到遗憾的频率。我们对以色列的 70 名主要非正式照顾者(17 名配偶,52 名子女和 1 名表亲)进行了采访,询问他们对已故亲属临终的遗憾,包括一个关于遗憾的一般问题和关于维持生命的治疗的遗憾问题。在计算遗憾和无悔的频率后,我们进行了定性分析,采用主题方法识别主题并解释数据。大多数照顾者(63%)表示遗憾,约 20%表示矛盾,既感到遗憾又否认遗憾。遗憾涉及给予的护理、经历的痛苦以及照顾者对死者的行为和与死者的关系,包括错过向亲人表达爱和关怀的机会。照顾者认为,在实施的 75 种维持生命的程序中,近 30%是错误的。大多数遗憾涉及不作为,例如沟通不充分,或不争取更好的护理。本文全面描述了 EoL 遗憾,并有助于澄清遗憾、无悔和对遗憾的矛盾的复杂性,尽管该研究仅限于一个国家。分析表明,需要对 EoL 过程进行公众教育,并需要对医疗保健系统进行改革,以改善沟通,更好地了解绝症患者的需求,并为家庭照顾者提供更多指导,帮助他们理解 EoL。

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