In their essay, “Raqeeb, Haastrup and Evans: Seeking Consistency Through a Distributive-Justice Based, Approach to Limitation of Treatment in the Context of Dispute,”Reference Cameron, Savulescu and Wilkinson ¹ Cameron et al. advance a fiercely utilitarian framework to deny care to children described as being in the minimally conscious state (MCS). Their argument is made within Britain’s National Health Service, a universal coverage system which Norman Daniels describes as a closed system of justice where saved resources accrue back to beneficiaries.Reference Daniels ² Beyond the questionable generalizability of their argument beyond Britain’s NHS, their appeal to distributive justice is flawed by its mischaracterization of MCS in children. This error undermines the factual basis for their appeal to distributive justice as they seek to deny care to children with serious brain injury.

MCS is state of liminal consciousness in which patients demonstrate an awareness of self, others, or the environment.Reference Giacino, Ashwal, Childs, Cranford, Jennett, Katz, Kelly, Rosenberg, Whyte, Zafonte and Zasle ³ In contrast to patients in the vegetative state,Reference Jennett and Plum ⁴ those in MCS may respond to their name, look up when someone enters the room, reach for a cup, and even speak. At a physiologic level, they are also distinct from patients who are vegetativeReference Laureys, Faymonville, Degueldre, Fiore, Damas, Lambermont, Janssens, Aerts, Franck, Luxen, Moonen, Lamy and Maquet ⁵ because they have intact distributed neural networks.Reference Giacino, Fins, Laureys and Schiff ⁶ On neuroimaging they can perceive languageReference Schiff, Rodriguez-Moreno, Kamal, Kim, Giacino, Plum and Hirsch ⁷ and experience pain.Reference Chatelle, Thibaut, Whyte, De Val, Laureys and Schnakers ⁸ Fundamentally, unlike those in the vegetative state MCS patients are conscious.

Despite the protestations of the authors about the high costs of ventilator support, MCS patients do not, by definition, need to be on a ventilator. While they may need respiratory hygiene to prevent aspiration, they have intact brain stems and so breathe on their own. This is a salient factual error given that the authors’ rationing scheme is predicated upon the cost of mechanical ventilation, asserting that its benefit should be subject to the same scrutiny as other treatments.

Speaking of definitions, it is curious that despite the predicate of the expense of MCS and the alleged need for ventilator support, the authors never once proffer a definition of MCS. This is even more troubling because the authors make the claim that their appeals constitute “… ‘Precision Justice,’ mirroring the advance of precision medicine.” It is difficult to weigh utilities when one gets the particulars wrong at an evidentiary level. Indeed, as I have asserted in a forthcoming anthology on precision medicine,Reference Fins, Barilan, Brusa and Ciechanove ⁹ there is an emerging science related to disorders of consciousness where precision of diagnosis is tied to emerging treatments such as the use of amantadine Reference Giacino, Whyte, Bagiella, Kalmar, Childs, Khademi, Eifert, Long, Katz, Cho, Yablon, Luther, Hammond, Nordenbo, Novak, Mercer, Maurer-Karattup and Sherer ¹⁰ and neuromodulation.Reference Schiff, Giacino, Kalmar, Victor, Baker, Gerber, Fritz, Eisenberg, O’Connor, Kobylarz, Farris, Machado, McCagg, Plum, Fins and Rezai ¹¹

The lack of an evidence base advanced by Cameron et al. is even more scientifically and normatively problematic given that the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research have issued a practice guideline setting standards for the diagnosis and treatment of patients with disorders of consciousness based on a ten-year evidence-based review.Reference Giacino, Katz and Schiff ¹²

Despite this progress, diagnosis, and prognostication in MCS patients remains challenging. The behaviors that distinguish MCS from VS are episodic and intermittent so when MCS patients do not exhibit signs of awareness they can appear vegetative, leading to a failure to identify consciousness in 41% of cases.Reference Schnakers, Vanhaudenhuyse, Giacino, Ventura, Boly, Majerus, Moonen and Laureys ¹³ Prognosis is equally perplexing as the temporal dynamics of MCS are not time dependent. As Lammi has shown, the length of time one is in MCS is not predictive of emergence from MCS.Reference Lammi, Smith, Tate and Taylor ¹⁴ Finally, there is the challenge of covert consciousness, or cognitive motor dissociation, where patients evidence volitional responsiveness on neuroimaging but not do so behaviorally.Reference Schiff ¹⁵

Pediatric diagnostic and prognostic challenges are even more challenging as children start off with a primitive nervous system that is developing. Early on, it may be difficult to classify children as minimally conscious as the requisite visual, motor, and language-based skills necessary for assessment have yet to develop.Reference Alvarez, Suskauer and Slomine ¹⁶ Moreover, assessment tools used to evaluate MCS in adultsReference Kalmar and Giacino ¹⁷ are only now being modified and calibrated for a pediatric population.Reference Slomine, Suskauer, Nicholson and Giacino ¹⁸ Given this evolving nosology, it is remarkable that the authors use MCS as a stalking horse for their rather draconian approach to limit the care of these children. For many of them, MCS is a conceptual conflation that may not even exist as a legitimate diagnostic category.

The authors’ epistemic certainty of what constitutes the “best interest” of the child becomes ever more disquieting because a child’s nervous system is in flux. Early in life there is the potential for developmental workarounds.Reference Thengone, Voss, Fridman and Schiff ¹⁹ This hopeful biological process, however, can be derailed absent human engagement, focused rehabilitation, and access to assistive technologies. If children are neglected and relegated to what is euphemistically described as “custodial care,”Reference Fins ²⁰ they will miss critical developmental milestones compounding the impact of their initial injury.

Of course, children have no hope of recovery if their lives are cut short based on administrative protocols that mischaracterize the nature of their conditions. These unilateral futility judgements marginalize parents, the child’s natural surrogates, and operate in willful violation of disability law, including the UN Convention on the Rights of Persons with Disabilities and the Americans with Disabilities Act, each of which call for the integration of people with disabilities into civil society. ²¹ It is self-evident that children who are prematurely withdrawn from life-sustaining therapy before they can manifest their potential will be irreversibly marginalized. While decisions to withhold or withdraw care can be ethically proportionate,Reference Hermeren ²² the factual predicate asserted by Cameron et al. makes any judgement of proportionality impossible. In this context, it is discriminatory to assert that continued treatment is harmful because of cost.

Instead of therapeutic nihilism, why not view our collective obligations to children with severe brain injury through the prism of disability law?Reference Fins, Wright and Bagenstos ²³ Why not invoke new insights from translational neuroscience to frame our collective obligations?Reference Wright and Fins ²⁴ When consciousness is present, it should be identified, celebrated, and given voice.Reference Fins and Wright ²⁵ When considering the best interests of children, we should see possibility in disability. ²⁶