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

Towards Ensuring Access and Equity

Despite remarkable advancements in the field of DoC science, these novel tools to potentially improve prognostication and neurorecovery are currently only available at select medical centres around the world.[134] As a result, these technologies may prove untenably inaccessible or unaffordable for many patients, especially those with chronic DoC who are often lost to neurological follow-up.[5,173] Quality DoC care ought to be available to all DoC patients. In contexts where advanced neuroimaging or neurophysiological techniques are not available, covert cognitive states will remain invariably undetected, and evaluations of patients with DoC will therefore be necessarily fraught with disproportionate diagnostic and prognostic uncertainty.

Crucially, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and Americans with Disabilities Act (ADA) mandate equal treatment of persons with disabilities and prohibits discrimination in the provision of services on the basis of disability.[141,243,244] Specifically, CRPD Article 25 stipulates that 'persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability … including health-related rehabilitation … early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities'. Building upon these imperatives, Article 26 details that parties 'shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation'. Denying or withholding neurorehabilitative services and therapies from persons with DoC in situations where patients or surrogates desire ongoing support is thus fundamentally inconsistent with the moral and legal obligations that stem from disability rights ethics and law.[5,141,245–247] Importantly however, these are jurisdiction specific claims and do not necessarily carry legal force in all places where people experience brain injury; for example, the ADA is germane to the USA, which has recognized but has not formally adopted the CRPD, and the adoption of the CRPD across Europe, the UK and elsewhere has been uneven. Opportunities for incorporating the disability rights perspectives of persons who have recovered from DoC and their surrogates into ongoing policy deliberations and research should be recognized and strengthened, along with opportunities to harmonize evidence-based healthcare policy with the ethical and legal imperatives borne of fundamental human rights codified in disabilities rights law.[5,248,249]

Fair mechanisms to improve equitable access and just distribution of these resources as well as opportunities for enrollment in ongoing clinical trials are thus needed to ensure that current disparities are addressed. A hub-and-spoke model of DoC care whereby patients or patient data from remote settings may be referred for specialty evaluation at central hubs of DoC expertise (virtually when appropriate) may be one systematic approach to overcoming geographic and financial impediments to access.[250] Within this model, a network of partnerships with community hospitals and remote care centres would be assembled and leveraged to facilitate bidirectional education and appropriate triage of patients. This model may foreseeably entail remote collection of neuroimaging or electrophysiological data, which can then be transmitted to a centre of DoC expertise for analysis and input. Hub-and-spoke model systems have been successfully used to improve patient access in other areas of medicine including cardiac care, stroke, radiology, neurology and cancer care.[251–257] In settings where data acquisition cannot be completed because of lack of neurotechnologies or support staff, appropriate patients may be selected for triage to regional hubs equipped with a more complete diagnostic armamentarium for specialized evaluation. Such systems redesign efforts should proceed in tandem with advocacy and education at community, institutional and legislative levels to raise awareness about the prevalence of DoC, increase availability of ICU and rehabilitation beds, and illuminate and overcome disparities in access to specialized care.[258]