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痴呆症诊断和护理中的伦理问题:美国神经病学学会立场声明。

Ethical Considerations in Dementia Diagnosis and Care: AAN Position Statement.

机构信息

From the Department of Neurology (W.C.), University of California San Francisco; Evidence-Based Practice Center (A.Y.T.), ECRI, Plymouth Meeting, PA; Division of Neurology (A.Y.T.), Michael J. Crescenz Veterans Affairs Medical Center, Philadelphia; Department of Neurology (Z.S.), The Pennsylvania State University, Hershey; School of Law (R.J.B.), University of Virginia, Charlottesville; and Department of Neurology (J.A.R.), Lahey Medical Center, Burlington, MA.

出版信息

Neurology. 2021 Jul 13;97(2):80-89. doi: 10.1212/WNL.0000000000012079.

Abstract

Alzheimer disease and other dementias present unique practical challenges for patients, their families, clinicians, and health systems. These challenges reflect not only the growing public health effect of dementia in an aging global population, but also more specific ethical complexities including early loss of patients' capacity to make decisions regarding their own care, the stigma often associated with a dementia diagnosis, the difficulty of balancing concern for patients' welfare with respect for patients' remaining independence, and the effect on the physical, emotional, and financial well-being of family caregivers. Caring for patients with dementia requires respecting patient autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care in accordance with other core ethical principles (beneficence, justice, and nonmaleficence). Whereas these ethical principles remain unchanged, neurologists must reconsider how to apply them given changes across multiple domains including our understanding of disease, clinical and legal tools for addressing manifestations of illness, our expanding awareness of the crucial role of family caregivers in providing care and maintaining patient quality of life, and societal conceptions of dementia and individuals' personal expectations for aging. This revision to the American Academy of Neurology's 1996 position statement summarizes ethical considerations that often arise in caring for patients with dementia; although it addresses how such considerations influence patient management, it is not a clinical practice guideline.

摘要

阿尔茨海默病和其他类型痴呆给患者、其家庭、临床医生和医疗体系带来了独特的实际挑战。这些挑战不仅反映了在全球人口老龄化背景下,痴呆症对公共卫生的影响日益增大,还反映了更具体的伦理复杂性,包括患者丧失对自身护理决策能力的早期、痴呆症诊断常伴随的耻辱感、在关心患者福利与尊重患者尚存独立性之间取得平衡的困难,以及对家庭照护者身体、情感和经济福祉的影响。护理痴呆患者需要尊重患者自主权,同时承认其决策能力逐渐下降,并继续根据其他核心伦理原则(善行、正义和不伤害)提供护理。尽管这些伦理原则保持不变,但鉴于包括我们对疾病的认识、解决疾病表现的临床和法律工具、我们对家庭照护者在提供护理和维持患者生活质量方面的关键作用的认识不断扩大以及社会对痴呆症的看法和个人对衰老的个人期望在内的多个领域发生了变化,神经科医生必须重新考虑如何应用这些原则。本修订版总结了在护理痴呆患者时经常出现的伦理考虑因素;尽管它涉及这些考虑因素如何影响患者管理,但它不是临床实践指南。

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