Division of Medical Ethics, Weill Medical College of Cornell University; The Consortium for the Advanced Study of Brain Injury, Weill Cornell Medical College and The Rockefeller University, New York NY; and Yale Law School, New Haven, CT.
Penn State Law, Pennsylvania State University, University Park, PA.
Mayo Clin Proc. 2020 Aug;95(8):1732-1739. doi: 10.1016/j.mayocp.2020.02.008.
In 2018, the American Academy of Neurology, the American Congress of Rehabilitation Medicine, and the National Institute on Disability, Independent Living, and Rehabilitation Research published a systematic evidence-based review and an associated practice guideline for improved assessment, treatment, and rehabilitation of patients with disorders of consciousness. Patients with disorders of consciousness include individuals in the vegetative and minimally conscious states, as well as others with covert consciousness and cognitive motor dissociation. These landmark publications (concurrently published in Neurology and Archives of Physical Medicine and Rehabilitation) supplant the 1994 New England Journal of Medicine Multi-Society Task Force report on the vegetative state and the 2002 criteria establishing minimally conscious states. The guideline re-designates the permanent vegetative state as chronic. In our article, we consider the legal and ethical implications of the practice guideline for clinical practice and explain the vulnerability of these patients who suffer from high rates of misdiagnosis, inadequate medical surveillance, undertreatment of pain, inadequate rehabilitation, and segregation in chronic care. We argue that these deficiencies in medical care are inconsistent with our growing appreciation of the dynamic nature of these brain states and an emerging standard of care as articulated by the national guideline. These deficiencies also violate domestic and international disability law. To substantiate this latter claim, we apply disability law to this population, focusing on key Americans with Disabilities Act mandates, the relevance of the 1999 Supreme Court, Olmstead v. L.C., and the utility of Olmstead enforcement actions to integrate the care of these individuals into the medical mainstream.
2018 年，美国神经病学学会、美国康复医学会和国家残疾、独立生活和康复研究所以及相关实践指南，发布了一项系统的循证综述，旨在改善意识障碍患者的评估、治疗和康复。意识障碍患者包括处于植物状态和最小意识状态的个体，以及其他具有隐匿意识和认知运动分离的个体。这些具有里程碑意义的出版物（同时发表在《神经病学》和《物理医学与康复档案》上）取代了 1994 年《新英格兰医学杂志多学会工作组报告》中关于植物状态的内容，以及 2002 年确立最小意识状态的标准。该指南将永久性植物状态重新指定为慢性。在我们的文章中，我们考虑了实践指南对临床实践的法律和伦理影响，并解释了这些患者的脆弱性，他们遭受高误诊率、医疗监测不足、疼痛治疗不足、康复不足和慢性护理隔离的困扰。我们认为，这些医疗护理的不足与我们对这些大脑状态的动态性质的日益认识以及国家指南所阐述的新兴护理标准不一致。这些不足也违反了国内和国际残疾法。为了证明这一说法，我们将残疾法应用于这一人群，重点关注《美国残疾人法》的关键要求、1999 年最高法院 Olmstead v. L.C.案的相关性，以及 Olmstead 执法行动将这些个体的护理纳入医疗主流的实用性。
