背景:在全球范围内,辅助死亡(AD)已在少数但越来越多的司法管辖区合法化,包括加拿大和澳大利亚。两国的早期研究表明,为了应对准入障碍,患者和护理人员采取行动影响他们对AD的个人经历,以及更广泛的AD系统。这项研究分析了患者和护理人员如何建议AD系统中的其他决策者应解决已发现的问题。
方法:我们进行了半结构化,在维多利亚州(澳大利亚)和加拿大三个省(不列颠哥伦比亚省,安大略省和新斯科舍省)。使用反身主题分析和码本模板分析对数据进行分析。
结果:对67名参与者进行了60次访谈(65名护理人员,2名患者)。在维多利亚,这涉及对33名参与者的28次采访(32名护理人员,1名患者)约28名患者经历。在加拿大,这涉及32次采访34名参与者(33名护理人员,1例)约33例患者经历。我们产生了六个主题,对应于患者和护理人员解决已发现的系统问题的六个总体建议:(1)改善有关AD的信息的内容和传播;(2)积极制定有关AD提供的政策和程序;(3)通过自上而下的行动解决机构异议;(4)积极开发悲伤资源和同伴支持机制;(5)修改法律以解决法律障碍;(6)参与并采取行动。
结论:AD系统应监测并响应具有AD系统第一手经验的患者和护理人员的建议,他们处于独特的位置,可以识别问题和改进建议。迄今为止,加拿大在解决已确定的问题方面反应相对较好,而维多利亚州政府已表示,没有计划修改法律以解决已确定的访问障碍。这可能导致患者和护理人员继续承担起采取行动来解决已识别问题的负担。
■患者和护理人员是这项研究的核心。我们采访了患者和护理人员,了解他们的AD经历,本文重点介绍了他们对解决AD系统中已发现的障碍的建议。澳大利亚和加拿大的患者兴趣小组也支持我们的招募过程。
BACKGROUND: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues.
METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis.
RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences.
CONCLUSIONS: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues.
UNASSIGNED: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.