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预先指示作为尊重患者价值观和偏好的工具:关于阿尔茨海默病案例的讨论

Advance directives as a tool to respect patients' values and preferences: discussion on the case of Alzheimer's disease.

作者信息

Porteri Corinna

机构信息

Bioethics Unit, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Via Pilastroni, 4 - 25125, Brescia, Italy.

出版信息

BMC Med Ethics. 2018 Feb 20;19(1):9. doi: 10.1186/s12910-018-0249-6.

Abstract

BACKGROUND

The proposal of the new criteria for the diagnosis of Alzheimer's disease (AD) based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment (MCI) or predementia/prodromal- stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis.

MAIN BODY

Advance directives are largely seen as an effective tool for planning medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient's changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer's disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients' values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact.

CONCLUSION

I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual's directive would be an unacceptable form of discrimination towards those patients.

摘要

背景

基于生物标志物数据提出的阿尔茨海默病(AD)新诊断标准,使得在轻度认知障碍(MCI)或痴呆前期/前驱期诊断AD成为可能。鉴于目前缺乏针对AD的有效治疗方法,在认知功能恶化之前及如果发生恶化时,让个人有机会亲自做出相关决定并规划未来,是早期诊断的主要优势之一。

正文

预先指示在很大程度上被视为在患者丧失行为能力时规划医疗护理的有效工具。然而,一些学者对痴呆患者预先指示的价值提出了质疑,他们提到了个人身份以及痴呆发病前后患者不断变化的利益等观点。在本文中,我讨论了预先指示在阿尔茨海默病和其他类型痴呆中的价值。尽管存在批评意见,但我认为预先指示在痴呆症中尤其可取,并给出了理由支持在疾病早期推广预先指示,将其作为尊重患者在医疗治疗方面的价值观和偏好的宝贵工具,包括参与研究和临终决定。我主要支持既包括医疗保健决策又包括指定事实上的代理人的预先指示。

结论

我得出结论,应该为前驱期或早期AD患者提供执行预先指示的机会,不尊重痴呆患者的指示将是对这些患者不可接受的歧视形式。

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