This paper, presented as the 2019 Cambridge Quarterly Neuroethics Network Charcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients.

In 2005 Elliott et al. published a paper entitled ‘Effect of posture on levels of arousal and awareness in vegetative and minimally conscious patients: a preliminary investigation’. Twelve patients, of whom 5 were in the vegetative state (VS) and 7 in the minimally conscious state (MCS), were assessed with the Wessex Head Injury Matrix (WHIM) when supine and when upright on a tilt table. The present study replicated and extended these findings by including a third position, sitting, in addition to supine and standing. We assessed 16 patients (8 in the VS and 8 in the MCS) with mixed aetiologies and compared the observed behaviours in three different positions (supine, sitting and standing) using the WHIM. Most patients (75%) showed more behaviours when in the upright position, compared to lying down (p < .003). Our findings are similar to those seen in the study reported by Elliott et al. With regard to sitting, 62.5% of patients were more responsive when assessed sitting in a wheelchair (p < .05) than in a supine position, and almost 69% were more responsive if assessed in an upright position compared to sitting. This was particularly true for patients in the MCS, where 87.5% did better if assessed on a tilt table or standing frame compared to sitting, suggesting that positional changes can have an effect on the level of arousal and awareness among patients in the VS and MCS.

Decision-making at the end-of-life in the United States has evolved over the last 50 yr, beginning with the development of the concept of brain death as a criterion for permitting patients who are in a state of ‘irreversible coma’ to be considered as ‘dead’ for purposes of ventilator withdrawal and organ transplantation. Since then, a firm consensus has emerged in American law and ethics that ‘Patients have a virtually unlimited right to refuse any unwanted medical treatment, even if necessary for life itself.’ With regard to patients who are unable to make decisions for themselves, both Europe and the United States are converging toward a view that respects a role for surrogates in decision-making while recognizing the need to limit their authority. Beyond decisions to withdraw and withhold treatments, both the United States and Europe are experimenting with active hastening of the dying process through euthanasia and physician-assisted suicide. In the author’s opinion, the next big question to be addressed in end-of-life decision-making is ‘Just how bad does the neurological condition and prognosis need to be before it is acceptable to allow a decision to withdraw life support’? Although the practices described here have wide acceptance throughout the United States and Europe, the worldwide emergence of religious fundamentalism and the associated vitalistic view about the sanctity of life may result in significant changes over the next few decades.