Center for Neurotechnology and Neurorecovery, Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA 02114, USA.
Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA 02138, USA.
Brain. 2021 Dec 16;144(11):3291-3310. doi: 10.1093/brain/awab290.
Neuroethical questions raised by recent advances in the diagnosis and treatment of disorders of consciousness are rapidly expanding, increasingly relevant and yet underexplored. The aim of this thematic review is to provide a clinically applicable framework for understanding the current taxonomy of disorders of consciousness and to propose an approach to identifying and critically evaluating actionable neuroethical issues that are frequently encountered in research and clinical care for this vulnerable population. Increased awareness of these issues and clarity about opportunities for optimizing ethically responsible care in this domain are especially timely given recent surges in critically ill patients with prolonged disorders of consciousness associated with coronavirus disease 2019 around the world. We begin with an overview of the field of neuroethics: what it is, its history and evolution in the context of biomedical ethics at large. We then explore nomenclature used in disorders of consciousness, covering categories proposed by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research, including definitions of terms such as coma, the vegetative state, unresponsive wakefulness syndrome, minimally conscious state, covert consciousness and the confusional state. We discuss why these definitions matter, and why there has been such evolution in this nosology over the years, from Jennett and Plum in 1972 to the Multi-Society Task Force in 1994, the Aspen Working Group in 2002 and the 2018 American and 2020 European Disorders of Consciousness guidelines. We then move to a discussion of clinical aspects of disorders of consciousness, the natural history of recovery and ethical issues that arise within the context of caring for people with disorders of consciousness. We conclude with a discussion of key challenges associated with assessing residual consciousness in disorders of consciousness, potential solutions and future directions, including integration of crucial disability rights perspectives.
近年来,意识障碍的诊断和治疗方面的进展引发了神经伦理学问题,这些问题迅速增多,日益相关,但尚未得到充分探讨。本专题综述的目的是提供一个用于理解意识障碍当前分类法的临床适用框架,并提出一种方法来识别和批判性评估在这一弱势群体的研究和临床护理中经常遇到的可操作的神经伦理学问题。鉴于世界各地与 2019 年冠状病毒病相关的长时间意识障碍的危重病患者激增,提高对这些问题的认识并明确在该领域优化符合伦理责任的护理的机会尤为及时。我们首先概述神经伦理学领域:它是什么,它在整个生物医学伦理学中的历史和演变。然后,我们探讨意识障碍中使用的命名法,涵盖美国神经病学学会、美国康复医学会和国家残疾、独立生活和康复研究所在此领域提出的类别,包括昏迷、植物状态、无反应觉醒综合征、最小意识状态、隐匿性意识和意识混乱等术语的定义。我们讨论了为什么这些定义很重要,以及为什么多年来这种分类法发生了如此大的演变,从 1972 年的 Jennett 和 Plum 到 1994 年的多学会工作组、2002 年的 Aspen 工作组以及 2018 年的美国和 2020 年的欧洲意识障碍指南。然后,我们转到意识障碍的临床方面的讨论,包括恢复的自然史和在照顾意识障碍患者的背景下出现的伦理问题。最后,我们讨论了与评估意识障碍中残留意识相关的关键挑战、潜在解决方案和未来方向,包括整合至关重要的残疾权利观点。