Division of Geriatric Psychiatry, McLean Hospital, Belmont, Massachusetts.
Department of Psychiatry, Massachusetts General Hospital, Boston.
Gerontologist. 2018 Nov 3;58(6):1016-1020. doi: 10.1093/geront/gnx107.
Dementia is a common neurodegenerative process that can significantly impair decision-making capacity as the disease progresses. When a person is found to lack capacity to make a decision, a surrogate decision-maker is generally sought to aid in decision-making. Typical bases for surrogate decision-making include the substituted judgment standard and the best interest standard. Given the heterogeneous and progressive course of dementia, however, these standards for surrogate decision-making are often insufficient in providing guidance for the decision-making for a person with dementia, escalating the likelihood of conflict in these decisions. In this article, the narrative interest standard is presented as a novel and more appropriate approach to surrogate decision-making for people with dementia. Through case presentation and ethical analysis, the standard mechanisms for surrogate decision-making for people with dementia are reviewed and critiqued. The narrative interest standard is then introduced and discussed as a dementia-specific model for surrogate decision-making. Through incorporation of elements of a best interest standard in focusing on the current benefit-burden ratio and elements of narrative to provide context, history, and flexibility for values and preferences that may change over time, the narrative interest standard allows for elaboration of an enriched context for surrogate decision-making for people with dementia. More importantly, however, a narrative approach encourages the direct contribution from people with dementia in authoring the story of what matters to them in their lives.
痴呆症是一种常见的神经退行性疾病，随着疾病的进展，会严重损害决策能力。当发现某人缺乏决策能力时，通常会寻找代理人来协助决策。代理决策的典型依据包括替代判断标准和最佳利益标准。然而，鉴于痴呆症的异质性和进行性病程，这些代理决策标准通常不足以为痴呆症患者的决策提供指导，从而增加了这些决策发生冲突的可能性。本文提出叙事利益标准作为痴呆症患者代理决策的一种新颖且更合适的方法。通过案例介绍和伦理分析，回顾和批判了痴呆症患者代理决策的标准机制。然后介绍并讨论了叙事利益标准作为一种特定于痴呆症的代理决策模型。通过纳入最佳利益标准的要素，关注当前的受益-负担比，以及叙事的要素，为可能随时间变化的价值观和偏好提供背景、历史和灵活性，叙事利益标准为痴呆症患者的代理决策提供了更丰富的背景。然而，更重要的是，叙事方法鼓励痴呆症患者直接参与撰写他们生活中重要事情的故事。
