Owen and Laureys have found a way to communicate with some of these patients, by posing questions to them as they lie inside a brain scanner. They ask patients to envision one of two scenarios, one if they mean to say “yes” and one for “no.” This raises the possibility of enabling these patients to make their own end-of-life decisions, but it also raises more ethical dilemmas. A big one: Should we even ask these patients if they wish to remain alive or die?
“That’s the question on everybody’s mind,” says Owen, “but it’s probably not appropriate to ask until we know what we will do with the answer. If a patient answers ‘Yes, I want to die,’ we still don’t have a procedure for allowing that to happen.” Most countries lack euthanasia laws; in those that do have them—such as Belgium and Switzerland—the vast majority of requests for euthanasia come from cancer patients; the laws are rarely, if ever, used in the context of patients with consciousness disorders.
Owen is collaborating with neuroethicist Judy Illes of the University of British Columbia to address these issues. With funding from the Canadian Institutes of Health Research, they are focusing on how these new technologies can provide information about such patients, how the tools could be incorporated into healthcare systems, and what they mean for patients, their families, and society.
“The question is how we can use this technology most beneficially,” says Illes, also a member of the Dana Alliance for Brain Initiatives. “It’s tempting to ask about end-of-life decisions, but that’s probably inappropriate. I think one of the best questions to ask is ‘Are you in pain?’ because that’s something we could respond to immediately.”
Patients could, she adds, also be asked about how their daily lives might be made more comfortable and enjoyable. “We might ask about their preferences for food or entertainment. Something that seems trivial to you and I may be super-important to somebody who is unable to do anything except lie in their bed.”