Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, United Kingdom.
Centre for Dementia Palliative Care Research, Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, United Kingdom.
PLoS One. 2021 May 27;16(5):e0252464. doi: 10.1371/journal.pone.0252464. eCollection 2021.
Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.
Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.
Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.
Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.
The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.
许多痴呆症患者在没有预先护理计划的情况下走到生命的尽头。许多人还没有准备好谈论生命尽头的事情，当他们失去能力时，决策就留给了他们的家人和专业人士。护理人员可能会从进一步的决策支持中受益。为了提供这种支持，了解决策过程是很重要的。
探索家庭护理人员和痴呆症患者在痴呆症临终护理中的决策过程和影响决策的因素，以在痴呆症临终护理背景下建立决策模型。
2018 年至 2019 年期间，在英国的记忆诊所、普通科医生和护理人员组织中，对 21 名家庭护理人员和 11 名痴呆症患者进行了半结构化访谈。使用主题分析对访谈进行分析，并将研究结果映射到跨专业共享决策模型上，以完善痴呆症决策模型。
参与者描述了临终前的五个关键决策作为决策的例子。我们利用这些经验，制定了一个痴呆症临终护理决策的修正模型。该模型考虑了影响决策过程的背景因素，包括：个人偏好、预先护理计划和持久授权书、痴呆症患者的能力和健康状况、来自他人的支持以及角色的明确性。决策过程由七个相互关联的阶段组成：1）确定决策者或团队；2）分享和交换信息；3）澄清价值观和偏好；4）管理和考虑情绪；5）考虑选择方案的可行性；6）平衡首选选择和实际选择；7）实施和反思结果。
修正后的模型分解了决策过程，并试图在简化过程的同时捕捉决策的微妙之处。它为护理人员提供了一个用于对话和支持决策的框架。
