加拿大家庭成员在临终医疗援助期间的内疚、判断和保密经历:一项定性描述性研究。

CMAJ open Pub Date : 2023-07-01 DOI:10.9778/cmajo.20220140
Ellen T Crumley, Jocelyne LeBlanc, Brett Henderson, Caitlin S Jackson-Tarlton, Erika Leck
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引用次数: 1

摘要

背景:虽然研究简要地提到,家庭成员在临终医疗援助(MAiD)过程中遇到了意想不到的经历,从保守秘密到被评判和感到内疚,但这些潜在的含义却很少被理解。这项研究的目的是研究加拿大家庭成员的内疚、判断和保密经历。方法:从2020年12月至2021年12月,通过电话或视频进行1小时半结构化访谈,进行定性描述性研究。通过地方和国家组织,我们招募了具有MAiD经验的加拿大家庭成员。对意外经历进行了子集分析,确定了3类:内疚、判断和保密。类似的代码在每个类别中被分组为主题。向与会者发送了草稿,并整合了他们的建议。结果:来自6个省份的45名2016 - 2021年经历过MAiD的家庭成员参与了调查。许多患有MAiD的人被诊断患有癌症、合并症或神经系统疾病。一些参与者意外地发现自己在管理内疚、判断和/或保密,这可能会使他们的悲伤和丧亲之痛复杂化。许多参与者经历了亲戚、朋友、宗教人士和/或卫生保健专业人员的评判。许多人保守秘密,因为他们不允许告诉或出于宗教原因,和/或有选择地告诉别人。解读:家庭成员表示,在MAiD过程中,他们没有准备好处理自己的内疚、评判和保密经历。MAiD项目和评估人员/提供者可以提供家庭特定信息,以帮助减轻这些负担,并为亲属可能遇到的常见但意外的经历做好更好的准备。
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Canadian family members' experiences with guilt, judgment and secrecy during medical assistance in dying: a qualitative descriptive study.

Background: Although research briefly mentions that family members have encountered unexpected experiences during the medical assistance in dying (MAiD) process, from keeping MAiD a secret, to being judged and feeling guilty, the potential implications of these are less understood. This study's aim was to examine guilt, judgment and secrecy as part of the MAiD experiences of family members in Canada.

Methods: We conducted a qualitative descriptive study with 1-hour semistructured interviews by telephone or video from December 2020 to December 2021. Through local and national organizations, we recruited Canadian family members with MAiD experience. A subset analysis of unexpected experiences was conducted, which identified 3 categories: guilt, judgment and secrecy. Similar codes were grouped together within each category into themes. Participants were sent the draft manuscript and their suggestions were integrated.

Results: A total of 45 family members from 6 provinces who experienced MAiD from 2016 to 2021 participated. Many people who had MAiD were diagnosed with cancer, comorbidities or neurologic disease. Some participants unexpectedly found themselves managing guilt, judgment and/or secrecy, which may complicate their grieving and bereavement. Numerous participants experienced judgment from relatives, friends, religious people and/or health care professionals. Many kept MAiD secret because they were not allowed to tell or for religious reasons, and/or selectively told others.

Interpretation: Family members said they were ill-prepared to manage their experiences of guilt, judgment and secrecy during the MAiD process. MAiD programs and assessors/providers could provide family-specific information to help lessen these burdens and better prepare relatives for common, yet unexpected, experiences they may encounter.

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