End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
Palliat Med. 2024 Feb;38(2):251-263. doi: 10.1177/02692163231219915. Epub 2024 Jan 31.
Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.
To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition.
An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis.
SETTING/PARTICIPANTS: We included 12 people with dementia and 9 supporters.
Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia.
The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.
国际共识文件和欧洲姑息治疗协会支持将预先护理计划定义为一种方法。有人担心这个定义可能不适用于痴呆症，而且也没有来自痴呆症患者的意见。
收集欧洲痴呆症患者工作组及其支持者对预先护理计划的定义的看法，并提出修改定义的建议。
进行了一项深入的定性研究，使用主题分析方法分析了在线焦点小组和访谈。
设置/参与者：我们纳入了 12 名痴呆症患者和 9 名支持者。
参与者对当前的预先护理计划定义提出了一些修改建议：提到决策能力下降的人；更好地反映家庭和/或基于信任的关系的作用；减少对临终/医疗决策的关注；加强对护理社会方面的关注。参与者建议保留和强调当前定义的一些要素包括将预先护理计划作为一个连续的过程进行规划，并且是可选的；提及沟通除了决策记录之外的内容；以及代理决策者的重要性。基于这些意见，我们提出了三项总体建议和 16 项具体建议，以修改预先护理计划的定义，使其包含痴呆症患者。
欧洲痴呆症患者工作组及其支持者的观点强调需要一个以人为本且包含痴呆症患者的预先护理计划定义。我们提供了切实可行的建议，以适应这些观点来修改定义。
