Vulliermet Franlu, Kenis Daan
Centre for Ethics, Department of Philosophy, University of Antwerp, Antwerp, Belgium.
Front Psychiatry. 2024 Jul 29;15:1435560. doi: 10.3389/fpsyt.2024.1435560. eCollection 2024.
Over the past decades, literature in dementia ethics has extensively looked at moral questions revolving around the care of older people living with dementia. Particularly prevalent are autonomy-related concerns regarding topics such as advance directives. In this paper, we argue that these discussions are crucially premised on how dementia is understood and represented. Despite the multiplicity of dementia presentations in people, the dominant discourse predominantly frames dementia as 'monstrous,' an 'enemy,' a destructive experience in need of eradication. We contend that such a monolithic approach, from a moral standpoint, is problematic in several respects. Indeed, framing heavily influences the way dementia is understood and experienced, leading to stigmatization, bias, and distress. Not only does it influence decisions and discussions on advance directives, but we argue that this flawed understanding of dementia is rooted in and contributes to epistemic harm. In the first section, we introduce the ethics of advance directives. More specifically, we introduce the view developed by Dworkin who has largely influenced the debate by making the case for advance directives by grounding them in the principles of autonomy and beneficence. In the second section, we show how dementia is still mostly framed monolithically as a 'destructive experience.' We then show that this framing is problematic because it oversteps the different pathologies dementia implies, which leads to an inaccurate representation of the condition. In the third section, we present possible alternative framings: dementia as normal aging, a person-centered care framework, and an embodied view. In the fourth section, drawing on recent developments in the epistemic injustice literature, we explore how maintaining and utilizing flawed understandings of dementia may lead to distinct moral-epistemic harms for those living with dementia and inform ongoing discussions on advance directives. Finally, in the concluding section, we return to the case of advance directives and what the implications of rethinking dementia are.
在过去几十年里，痴呆症伦理学的文献广泛探讨了围绕痴呆症患者护理的道德问题。与自主权相关的问题，如预先指示等话题，尤为普遍。在本文中，我们认为这些讨论至关重要地基于对痴呆症的理解和呈现方式。尽管人们表现出的痴呆症多种多样，但主流话语主要将痴呆症描绘为“可怕的”、“敌人”，是一种需要根除的破坏性经历。我们认为，从道德角度来看，这种单一的方法在几个方面存在问题。事实上，这种描绘严重影响了对痴呆症的理解和体验方式，导致污名化、偏见和痛苦。它不仅影响关于预先指示的决策和讨论，而且我们认为这种对痴呆症的错误理解既根深蒂固又会导致认知伤害。在第一部分，我们介绍预先指示的伦理学。更具体地说，我们介绍德沃金提出的观点，他通过将预先指示建立在自主权和行善原则的基础上，在很大程度上影响了这场辩论。在第二部分，我们展示痴呆症仍然大多被单一地描绘为“破坏性经历”。然后我们表明这种描绘是有问题的，因为它忽略了痴呆症所隐含的不同病理情况，这导致对该病症的不准确呈现。在第三部分，我们提出可能的替代描绘：将痴呆症视为正常衰老、以个人为中心的护理框架以及一种具身观点。在第四部分，借鉴认知不公正文献中的最新发展，我们探讨维持和利用对痴呆症的错误理解如何可能给痴呆症患者带来独特的道德 - 认知伤害，并为正在进行的关于预先指示的讨论提供信息。最后，在结论部分，我们回到预先指示的案例以及重新思考痴呆症的意义所在。
