There is ongoing ethical and legal debate about withdrawing life sup- port for patients with disorders of consciousness (DOCs). Frequently fu- eling 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. Yet 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 affect as domains for which there is po- tential to reach across the communication gap, and restore to these voiceless persons some measure of control. (shrink)

The presence or absence of consciousness is the linchpin of taxonomy for disorders of consciousness (DOCs), as well as a focal point for end-of-life decision making for patients with DOCs. Focus on consciousness in this latter context has been criticized for a number of reasons, including the uncertainty of the diagnostic criteria for consciousness, the irrelevance of some forms of consciousness for determining a patient’s interests, and the ambiguous distinction between consciousness and unconsciousness. As a result, there have been recent (...) suggestions that perhaps consciousness ought not to play the focal role that it does in decision making for persons with DOCs, and that other considerations, such as patient and family values, ought to take center stage. In this article, I take a step back and reexamine the meaning of consciousness in the DOC taxonomy. I propose that, while consciousness in DOC taxonomy is defined as “wakeful awareness,” this definition, while clinically expedient, occasions ethical misunderstanding. Using resources from non-Western philosophy of mind, I argue that the form of consciousness that is ethically relevant in DOCs is intransitive, or pure. I contrast this pure experience with transitive consciousness to highlight why ethical conclusions ought not define consciousness solely as “wakeful awareness,” even if clinical criteria do. (shrink)