Can they suffer? The ethical priority of quality of life research in disorders of consciousness

Abstract

There is ongoing ethical and legal debate about withdrawing life support for patients with disorders of consciousness (DOCs). Frequently fueling the debate are implicit assumptions about the value of life in a state of impaired consciousness, and persistent uncertainty about the quality of life (QoL) of these persons. Ye t there are no validated methods for assessing QoL in this population, and a significant obstacle to doing so is their inability to communicate. Recent neuroscientific discoveries might circumvent that problem and help shed light on QoL in DOCs. There is an ethical imperative to prioritize QoL research in this patient population, to provide evidence to inform treatment, research, and end of life decisions. A minimalist and pragmatic model of QoL is proposed, targeting positive and negative affects as domains for which there is potential to reach across the communication gap, and restore to these voiceless persons some measure of control. Key terms: Ve getative state, disorders of consciousness, minimally conscious state, quality of life, functional neuroimaging