". .. the question is not, Can they reason? nor, Can they talk? but, Can they suffer?" [1] Can they suffer? The ethical priority of quality of life research in disorders of consciousness

The matter of withdrawing life support for persons with disorders of consciousness (DOCs) has given rise to much legal and ethical controversy, but it is also a source of anguished debate for families faced with making life or death decisions on behalf of loved ones. Frequently fueling debate are implicit assumptions about the value of life in a state of impaired consciousness, and a large source of discomfort about what to do for the DOC patient is persistent uncertainty about the quality of life (QoL) of these patients. A significant obstacle to assessing QoL in DOC patients is their inability to verbally communicate. Recent neuroscientific advances hold out the hope of reaching across that communication gap for some patients. As research on DOCs proceeds, there is an ethical imperative to prioritize research on QoL, which should consider both how and what to measure in persons with DOCs. The reasons are threefold: 1. Those who contemplate end of life decisions for individual patients have an urgent need for answers about QoL, but information is also important for therapeutic decisions, e.g. the need for pain relief or environmental enhancement. Can they suffer? The ethical priority of quality of life research in disorders of consciousness L. Syd M. Johnson a a Michigan Te chnological University 2. DOC patients are a highly vulnerable patient group, unable to consent to research participation or treatment. Decisional proxies should have information about the potential burdens and benefits for patients of treatment options and research participation, and QoL is a critical piece of that information. 3. Without the ability to assess QoL, the ability to measure the success or failure (in terms of patient wellbeing) of therapeutic measures is also lacking. QoL is itself an important part of outcome measurement, and should be viewed as an end point in treatment decisions. Additionally, it is possible that QoL research in DOC p atients will benefit other groups of patients who are unable to communicate, but for whom QoL concerns are equally pressing: infants, the elderly demented, and persons with severe cognitive or intellectual disabilities. Before considering the case for prioritizing QoL research, I'll discuss why QoL assessment is particularly problematic in DOC patients, and propose a minimalist and pragmatic model of QoL appropriate to this population. Disorders of Consciousness DOCs include coma, vegetative state/unresponsive wakefulness syndrome (VS/UWS) 1 , and the minimally conscious state (MCS). Locked-in Syndrome (LIS) is not a DOC, as persons in the LIS do not have impaired consciousness, but the condition can behaviorally mimic VS/UWS and coma in that the LIS patient is unresponsive as a result of paralysis. LIS points to a problematic feature of DOCs. There are at least two conceptions of the VS/UWS at work in clinical diagnosis: a behavioral conception, confirmed by bedside examination (i.e. the patient is in a state of eyes-open behavioral unresponsiveness), and a defini-1 Unresponsive Wakefulness Syndrome is a new designation for the vegetative state recently proposed by the European Task Force on Disorders of Consciousness. UWS avoids the negative connotation and stigma attached to the term "vegetative", and is a more accurate description of the syndromic nature of VS, i.e. it acknowledges that these patients are human beings (and not mere "vegetables"), it includes wakefulness and unresponsiveness to stimuli, and does not make a claim about awareness. This distinguishes UWS, which acknowledges that some patients may be conscious but behaviorally unresponsive, from VS, which defines the unresponsive patient as unconscious 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. 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 affects as domains for which there is potential to reach across the communication gap, and restore to these voiceless persons some measure of control