With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

中文翻译：

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通过讲故事将患有严重智力障碍和多重障碍的人的偏好置于临终决策的中心

这篇文章侧重于叙事方法的使用，是对临终严重智力和多重残疾 (PIMD) 人的决策支持的评论。由于医疗保健的改善，PIMD 患者的寿命比以往任何时候都长。因此，他们越来越多地面临与临终关怀和规划有关的决定。尽管人们越来越关注临终计划，但被认为具有认知和决策能力的人更有可能在临终时获得对偏好做出回应的机会。那些支持 PIMD 患者计划和决定临终关怀的人面临着几个挑战。这些挑战的根源在于 PIMD 患者与其沟通伙伴之间的沟通交流困难，导致人们普遍认为这一群体的决策无能。为应对这一挑战，本文利用实证研究来讨论姑息治疗和预先护理计划背景下的决策支持，特别是针对 PIMD 患者。它促进决策支持，以此作为协助 PIMD 患者的支持者的一种方法，允许这些人的偏好表达得到承认，并在临终时采取行动。叙述的使用作为实现这种响应的工具被提出和讨论，特别是在临终计划的背景下。本文利用实证研究来讨论姑息治疗和预先护理计划背景下的决策支持，特别是针对 PIMD 患者。它促进决策支持，以此作为协助 PIMD 患者的支持者的一种方法，允许这些人的偏好表达得到承认，并在临终时采取行动。叙述的使用作为实现这种响应的工具被提出和讨论，特别是在临终计划的背景下。本文利用实证研究来讨论姑息治疗和预先护理计划背景下的决策支持，特别是针对 PIMD 患者。它促进决策支持，以此作为协助 PIMD 患者的支持者的一种方法，允许这些人的偏好表达得到承认，并在临终时采取行动。叙述的使用作为实现这种响应的工具被提出和讨论，特别是在临终计划的背景下。