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Can an effective end-of-life intervention for advanced dementia be viewed as moral? 对晚期痴呆症进行有效的临终干预可以被视为道德行为吗?
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12528
Stanley A Terman

Many people dread prolonged dying with suffering in the terminal illness, advanced dementia. To successfully facilitate a timely dying, advance directives must be effective and acceptable. This article considers whether authorities, including treating physicians, can accept as moral, the effective intervention that ceases caregivers' assistance with oral feeding and hydrating. The article presents eight criticisms and "alternate views" regarding ceasing assisted feeding/hydrating. It draws on perspectives from clinical medicine, law, ethics, and religion. The conflict is between (A) people's core beliefs that reflect cultural norms and religious teachings regarding what is moral versus (B) patients' autonomous right of self-determination and claim right to avoid suffering. The article presents each side as strongly as possible. Accepting the intervention as moral could allow patients a peaceful and timely dying from patients' underlying disease. Confidence in future success can deter patients and their surrogates from considering a hastened dying in earlier stages of dementia.

许多人都害怕在临终疾病--晚期痴呆症--的折磨中度过漫长的死亡。为了成功地促进及时死亡,预先指令必须是有效和可接受的。本文探讨了包括主治医生在内的权威人士是否可以接受停止护理人员协助口服喂食和水化的有效干预是合乎道德的。文章提出了关于停止辅助喂食/补充水分的八种批评和 "另一种观点"。文章借鉴了临床医学、法律、伦理学和宗教的观点。冲突发生在 (A) 人们的核心信仰与 (B) 病人的自主自决权和避免痛苦的权利之间,前者反映了关于什么是道德的文化规范和宗教教义。文章尽可能有力地阐述了双方的观点。接受干预是合乎道德的,可以让患者安详、及时地从潜在疾病中死去。对未来成功的信心会阻止患者及其代理人在痴呆症早期阶段考虑加速死亡。
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引用次数: 0
Navigating late-stage dementia: A perspective from the Alzheimer's Association. 驾驭晚期痴呆症:阿尔茨海默氏症协会的观点。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12530
Kristen Clifford, Monica Moreno, Courtney M Kloske

Alzheimer's disease (AD) is the most common cause of dementia, a general term for memory loss and decline in other cognitive abilities enough to interfere with daily life. AD accounts for 60% to 80% of dementia cases. The late stage of AD tends to be the shortest stage and, on average, lasts 1 to 2 years. As this stage of the condition progresses, it requires continuous intensive long-term care and around-the-clock intensive care. The Alzheimer's Association stands firm in its commitment to supporting individuals living with AD and other dementia, their care partners, and their health-care providers as they navigate treatment and care decisions across the continuum of the disease. This article is a direct response to recently published works that run counter to the Association's viewpoint. It outlines the Association's perspective on crucial factors for consideration during late-stage dementia care, including advanced directives, palliative care, nutrition, and legal considerations. It explores diverse perspectives from the field, differing from the Alzheimer's Association's stance. Last, it underscores resources available through the Alzheimer's Association, aiming to present a comprehensive perspective on late-stage care for support and assistance to all involved.

阿尔茨海默病(AD)是痴呆症最常见的病因,是记忆力减退和其他认知能力下降的总称,足以影响日常生活。阿兹海默症占痴呆症病例的 60% 到 80%。注意力缺失症的晚期往往是最短的阶段,平均持续 1 到 2 年。随着病情的发展,这一阶段需要持续的长期强化护理和全天候的重症监护。阿尔茨海默氏症协会坚定地致力于为患有注意力缺失症和其他痴呆症的患者、他们的护理伙伴以及医疗服务提供者提供支持,帮助他们在疾病的整个过程中做出治疗和护理决定。本文是对最近出版的与协会观点相悖的著作的直接回应。文章概述了协会对痴呆症晚期护理过程中需要考虑的关键因素的看法,包括预先指示、姑息治疗、营养和法律考虑因素。它探讨了该领域与阿尔茨海默病协会立场不同的各种观点。最后,它强调了阿尔茨海默氏症协会提供的资源,旨在从全面的角度介绍晚期护理,为所有相关人员提供支持和帮助。
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引用次数: 0
Broadening the concept of suffering is a less than adequate strategy for respecting patients in advanced dementia. 扩大 "痛苦 "的概念并不是尊重晚期痴呆症患者的适当策略。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12533
Paul T Menzel
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引用次数: 0
Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it. 评论:"痴呆症患者的及时死亡:利用患者的判断,拓宽痛苦的概念"。及时死亡、痴呆症患者的痛苦,以及家庭和专业护理人员在预防中的作用。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12536
Jenny T van der Steen, Trijntje M Scheeres-Feitsma, Petruschka Schaafsma

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

将痴呆症患者的痛苦概念扩大到五种类型,包括特曼等人提出的家庭照护者的痛苦,可能有助于提高人们对减轻痴呆症患者痛苦的必要性的认识,并采取一种整体的方法。然而,作为晚期痴呆症患者预先护理计划中关于严重到需要停止辅助喂养或其他维持生命治疗的客观标准,这些标准仍需要根据现有的治疗方法和应对方式的改变等情况进行解释。新的建议是将足够严重的痛苦扩大到家庭痛苦,包括 "双向移情痛苦"。我们认为,这给责任问题带来了新的难题,可能会增加负罪感。通过将中等程度的痛苦相加来量化痛苦,可能会使问题更加复杂。因此,我们认为,医护人员应指导这一过程,并对当前遵照患者先前意愿所做的决定承担责任。
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引用次数: 0
Commentary: Can an effective end-of-life intervention for advanced dementia be viewed as moral? 评论:针对晚期痴呆症的有效临终干预能被视为道德行为吗?
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12531
Trijntje M Scheeres-Feitsma, Petruschka Schaafsma, Jenny T van der Steen, Johannes J M van Delden

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.

我们对特曼医生关于停止对晚期痴呆症患者进行辅助喂食和水合治疗的道德理由的思考进行了评论。他论文的核心观点是,预先指令可以解决未来有关辅助喂食的困境。我们认为,这种静态工具不适合评估如何处理拒绝进食问题的复杂性和动态性,尤其是对痴呆症患者而言。它高估了过去与当前情况的关系,没有为改变愿望的可能性留有余地。此外,由于重点完全放在早期痴呆症患者的个人自主性上,因此没有涉及专业护理人员和家人的观点。在根据患者的生命观解释指令和实际情况时,应考虑多角度因素,以现实的方式说明晚期痴呆症患者的护理在道义上的合理性。
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引用次数: 0
Fasting to stop suffering in advanced dementia. 断食,让晚期痴呆症患者不再痛苦。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12532
William Lawrence Allen

Many healthcare providers think withholding food and fluids from advance dementia patients, even if those patients requested that when competent, is immoral. This means such patients suffer unnecessarily long. Patients have the ethical right when capacitated to specify that they want assistance with food and drink stopped when they have advanced dementia. Physicians should implement these patient choices when advance dementia patients can no longer feed themselves. In some states there may be legal barriers to this practice. The perpetual placement of food and drink within reach of patients who are unable to feed themselves is futile, so there is no need for it. The best way for persons concerned about suffering in advanced dementia is to add a supplement to one's advance directive specifying under what circumstances one wants food and fluids assistance stopped.

许多医疗服务提供者认为,拒绝为先期痴呆症患者提供食物和液体是不道德的,即使这些患者在有能力时提出了这样的要求。这意味着这些病人会遭受不必要的长期痛苦。患者在有能力时有道德权利明确表示他们希望在痴呆症晚期停止饮食帮助。当晚期痴呆症患者无法再自己进食时,医生应执行患者的这些选择。在某些州,这种做法可能会遇到法律障碍。永远把食物和饮料放在无法自己进食的病人触手可及的地方是徒劳无益的,因此没有必要这样做。对于担心晚期痴呆症患者遭受痛苦的人来说,最好的办法是在预先医疗指示中增加一项补充内容,说明在什么情况下希望停止食物和液体援助。
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引用次数: 0
Responses to Open Peer Commentaries about "Timely dying in dementia: use patients' judgments and broaden the concept of suffering" and "Can an effective end-of-life intervention for advanced dementia be viewed as moral?" 对有关 "痴呆症患者的适时死亡:利用患者的判断并拓宽痛苦的概念 "和 "针对晚期痴呆症的有效临终干预能否被视为道德行为?"的公开同行评论的回应
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12529
Stanley A Terman, Karl E Steinberg
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引用次数: 0
Timely dying in dementia: Use patients' judgments and broaden the concept of suffering. 痴呆症患者的及时死亡:利用患者的判断,拓宽痛苦的概念。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12527
Stanley A Terman, Karl E Steinberg, Nathaniel Hinerman

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

晚期痴呆症(PLAD)患者在实现避免长期死亡和严重痛苦的目标方面面临着诸多挑战。其中之一是如何确定晚期痴呆症患者当前的痛苦何时严重到足以停止所有维持生命的治疗,包括撤销口服喂食和水化辅助,这是一个有争议的命令。本文扩大了痛苦的概念,将无法同时观察到的痛苦和亲人的痛苦包括在内。四个范式的转变将这些概念具体化。在预先护理计划中,患者可以判断哪些未来的临床状况会导致严重的痛苦。在决定何时允许患者死亡时,主治医生/医疗服务提供者只需评估患者是否达到了患者之前判断的合格条件。问题该方案能否防止 PLAD 患者在痛苦中延长生命?阻止早期痴呆症患者先发制人地自杀?动摇代理决策人对中期痴呆症患者停止维持生命治疗的决心?激起医疗服务提供者的抵触情绪,不愿放弃其决定患者痛苦的传统单边权力?
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引用次数: 0
A Review of Terman's "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering". 回顾特曼的《痴呆症患者的适时死亡》:利用患者的判断,拓宽痛苦的概念"。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-15 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12535
Norman L Cantor
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引用次数: 0
Alzheimer's disease heterogeneity revealed by neuroanatomical normative modeling. 神经解剖规范模型揭示阿尔茨海默病的异质性。
IF 4 Q1 CLINICAL NEUROLOGY Pub Date : 2024-03-13 eCollection Date: 2024-01-01 DOI: 10.1002/dad2.12559
Flavia Loreto, Serena Verdi, Seyed Mostafa Kia, Aleksandar Duvnjak, Haneen Hakeem, Anna Fitzgerald, Neva Patel, Johan Lilja, Zarni Win, Richard Perry, Andre F Marquand, James H Cole, Paresh Malhotra

Introduction: Overlooking the heterogeneity in Alzheimer's disease (AD) may lead to diagnostic delays and failures. Neuroanatomical normative modeling captures individual brain variation and may inform our understanding of individual differences in AD-related atrophy.

Methods: We applied neuroanatomical normative modeling to magnetic resonance imaging from a real-world clinical cohort with confirmed AD (n = 86). Regional cortical thickness was compared to a healthy reference cohort (n = 33,072) and the number of outlying regions was summed (total outlier count) and mapped at individual- and group-levels.

Results: The superior temporal sulcus contained the highest proportion of outliers (60%). Elsewhere, overlap between patient atrophy patterns was low. Mean total outlier count was higher in patients who were non-amnestic, at more advanced disease stages, and without depressive symptoms. Amyloid burden was negatively associated with outlier count.

Discussion: Brain atrophy in AD is highly heterogeneous and neuroanatomical normative modeling can be used to explore anatomo-clinical correlations in individual patients.

导言:忽视阿尔茨海默病(AD)的异质性可能导致诊断延误和失败。神经解剖学规范建模能捕捉大脑个体差异,可帮助我们了解阿尔茨海默病相关萎缩的个体差异:我们将神经解剖常模应用于确诊为 AD 的真实世界临床队列(n = 86)的磁共振成像。我们将区域皮层厚度与健康参考队列(n = 33,072)进行了比较,并对离群区域的数量进行了加总(总离群计数),然后绘制了个体和群体层面的图谱:结果:颞上沟的异常值比例最高(60%)。其他患者的萎缩模式重叠率较低。非躁狂症患者、疾病晚期患者和无抑郁症状患者的离群值平均总数较高。淀粉样蛋白负荷与离群点数量呈负相关:讨论:注意力缺失症患者的脑萎缩具有高度异质性,神经解剖常模可用于探索个体患者的解剖与临床相关性。
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引用次数: 0
期刊
Alzheimer''s and Dementia: Diagnosis, Assessment and Disease Monitoring
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