The Neuroethics of Disorders of Consciousness

A Brief History of Evolving Ideas

Michael J. Young; Yelena G. Bodien; Joseph T. Giacino; Joseph J. Fins; Robert D. Truog; Leigh R. Hochberg; Brian L. Edlow


Brain. 2021;144(11):3291-3310. 

In This Article

Open Questions in Disorders of Consciousness: Covid-19 and Beyond

Unprecedented research advances in the field of DoC have generated a complex set of novel ethical, societal and clinical challenges (Box 1). Many patients are incorrectly labelled as unaware either due to insufficient evaluation, confounding medical states or because they are covertly conscious without discernible behavioural markers of awareness. These issues are magnified by shortcomings in prevailing diagnostic criteria in which absence of behavioural responsiveness is erroneously equated to absence of awareness, a premise challenged by the discovery of covert consciousness. Presumptions of poor prognosis and biased quality of life projections rooted in ableism may lead to unduly pessimistic decisions, including premature limitation of life-sustaining treatments or denial of access to rehabilitation.[5,214] On a systems level, economic and resource constraints may motivate early triage or treatment limitation to maintain an available supply of already limited ICU beds, as keeping more neurocritical ill patients on life-support pending recovery for prolonged periods of time may further strain care structures and magnify family burden (psychosocial and financial).[223,259] Moreover, systems of post-acute care and neurorehabilitation are underequipped to adequately and equitably accommodate those with chronic DoC.[173,178] These issues have been highlighted during the COVID-19 pandemic, with increasing recognition of delayed recovery of consciousness after COVID-19 critical illness and of the unique ethical issues pertaining to this growing population, including special sensitivity to nosology and methods of neuroprognostication.[1,3,219–222] Novel neuroimaging and electrophysiological tools carry promise to improve evaluations of consciousness and neuroprognosis, but raise a challenging set of ethical questions surrounding uncertainty about when to use them, what the significance of the data they yield is, how to ensure equity in access, and whether and how to disclose imperfect and at times conflicting data to surrogates and families. There is also great uncertainty about how to translate these techniques into pre-existing clinical decision-making paradigms, challenges amplified by recent society guideline recommendations encouraging clinical implementation.

Given the increasingly apparent limitations of current systems of diagnosis and management, ethical obligations depend upon clinicians and professional societies to refine our nosology of impaired consciousness and associated guidelines based on emerging data. Diagnostic categories ought to be revised in a way that can be informed by novel neuroimaging and EEG paradigms, wherever such technologies are readily available.[123] These efforts should include revision of the International Classification of Diseases 10th Revision (ICD-10), which while containing codes for locked-in syndrome (G83.5), persistent vegetative state (R40.3), somnolence, stupor and coma (R40), currently lacks codes for MCS and cognitive motor dissociation. This should proceed in tandem with ongoing research identifying improved strategies to detect consciousness, characterize its neural correlates (as well as those of self-consciousness) and predict neurorecovery, along with ongoing development of neurotherapeutics and brain–computer interfaces to facilitate societal reintegration and ethically resilient care in this vulnerable population. Approaches to caring for patients and supporting surrogates should be personalized to be as precise as possible in diagnostic assessments, while recognizing and conveying degrees of uncertainty.[260] During goals-of-care conversations, balance is needed between the recognized right to die with supporting the right to care for those who want it, and recognition of the cognitive biases that may influence assessments in this process is crucial.[91,178,261] Clinical paradigms and healthcare policies should seek to uphold and protect the moral and legal rights of persons with DoC that stem from international disability law and bioethics, and practice deficiencies should be identified and corrected.[141] To these ends, advocacy for improved training, care-systems redesign and optimized resource-allocation to longitudinally support this population are imperative.

As technologies for assessing consciousness continue to mature and proliferate, clinicians, families of patients with DoC and ethicists will be faced with increasing data of evolving diagnostic and predictive value; those data will be accompanied by both increased insight into the state of consciousness and, often, heightened dilemma in clinical decision-making. Recognizing the daunting road ahead, further empirical study is needed to clarify how to ethically translate emerging neurotechnologies to detect consciousness in patients with severe brain injuries. Salient perspectives of key stakeholders and end-users should be captured and studied, and aligned insights may be used to inform an empirically-grounded framework for the responsible research and translation of novel neurotechnologies to guide clinicians and researchers through these formidable settings of diagnostic and prognostic uncertainty.