Fetherstonhaugh Deirdre, McAuliffe Linda, Bauer Michael, Shanley Chris
Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne, Victoria, Australia.
Centre for Applied Nursing Research, Western Sydney University, Penrith South, New South Wales, Australia.
J Med Ethics. 2017 Jan;43(1):35-40. doi: 10.1136/medethics-2015-103301. Epub 2016 Oct 25.
For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia.
Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data.
Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity.
Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.
对于痴呆症患者而言，随着病情发展，他们为自己做出重要决策的能力会逐渐下降。因此，诸如影响生活方式、医疗治疗及临终等重要决策，就落到了他人（即替代决策者）的肩上。本研究调查了替代决策者如何代表痴呆症患者做出重要决策。
对34名正式或非正式承担替代决策者角色的家庭成员进行了半结构化访谈。对访谈进行了主题分析，包括识别、分析和报告数据中出现的主题。
分析揭示了与痴呆症替代决策过程相关的三个主要主题：了解患者的意愿；与他人协商并达成平衡。大多数参与者表示，痴呆症患者没有预先制定的护理计划。即使了解痴呆症患者之前的意愿，决策过程往往也充满复杂性。
代表痴呆症患者进行替代决策通常是一个艰难的过程。预先护理计划在支持这一过程中可发挥重要作用。医疗保健专业人员能够认识到替代决策者所面临的挑战，并通过预先护理计划以适合其需求和情况的方式为他们提供支持。
