Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada.
Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
J Gen Intern Med. 2022 Mar;37(4):809-815. doi: 10.1007/s11606-021-07012-z. Epub 2021 Jul 21.
The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention.
The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14.
Caregiver experience was examined based on qualitative, semi-structured interviews.
A total of 22 caregivers of patients who had requested MAiD were interviewed.
Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology.
The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles.
The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.
2016 年 6 月，医疗辅助死亡（MAiD）合法化，为加拿大的临终关怀增加了一个选择。家庭护理人员在患者的临终决策中发挥着重要作用。他们可能会因为自己的角色而经历独特的心理负担或困扰。然而，我们对与患者 MAiD 请求相关的护理人员的体验以及护理人员在 MAiD 干预之前、期间和之后所需的社会心理支持的性质知之甚少。
本研究的目的是在 C-14 法案之后，更好地了解加拿大法律环境下护理人员对 MAiD 的体验。
根据定性、半结构化访谈，考察了护理人员的体验。
共有 22 名护理人员接受了采访，他们的患者曾请求 MAiD。
根据扎根理论方法，对记录、转录和分析的转录本进行分析。
在法律框架内，MAiD 的护理人员体验被认为是一场“奔向终点”的竞赛，最终目标是为患者创造理想的临终体验，同时平衡对能力的威胁，以免损害他们获得 MAiD 的机会。护理人员可以用总括框架中的共同奔跑者或旁观者来描述。护理人员的痛苦来源与这些角色有关。
“奔向终点”的理论模型提供了新的知识和理解，可以为护理人员提供定制的支持服务、立法变化对这一人群的影响以及未来研究提供信息，这些研究涉及临终前的决策和护理人员的体验。
