Over the past 20 years, neuroscientist Dr. Adrian Owen has studied many patients who are minimally conscious or in a vegetative state. To assume they're all unhappy is "extremely naive," he says. While these patients may not be perfectly content inhabiting seriously damaged brains and bodies, he believes one can't assume theirs is a fate worse than death.
What makes a life worth living? And at what point is it not?
According to a 2013 Supreme Court decision on the fate of Toronto patient Hassan Rasouli, these questions should have been determined by the Consent and Capacity Board (CCB), an independent body created by the Ontario government. (Similar boards exist in other provinces.)
While doctors said they believed Rasouli had no chance of recovery and that keeping him alive would force them to violate their obligation to do no harm, Rasouli's wife, Parichehr Salasel, said his life was worth preserving and that she believed life-and-death decisions should be left to God.
By ruling against the doctors, the Supreme Court determined that when there's a disagreement about whether to continue life support, the case should be heard by the CCB.
If Rasouli's case provided clarity about the legal procedure for making decisions about continuing or discontinuing life support, the ethics involved in making such decisions remain a matter of debate.
Prof. Arthur Schafer, founding director of the Centre for Professional and Applied Ethics at the University of Manitoba, says most Canadians would be "horrified" at the prospect of being stuck in an irreversible coma or vegetative state, and he believes most would wish to end their lives in such a situation.
"The obvious question is: What would be the point of keeping me alive in a condition where I can't possibly benefit from aggressive, life-prolonging medical care?" he says.
Schafer acknowledges that while family members can be overwhelmed by the burden of having to decide whether to pull the plug on a loved one, providing aggressive life-prolonging care to patients, for whom there is no chance of recovery, is at best futile, and in the worst case can cause patients harm, including pain or distress or keep them alive in a condition they may feel is undignified.
Moreover, he adds, intensive-care-unit "beds are scarce and they're extremely expensive, and one person's provision is another person's deprivation."
In cases where there's no chance of recovery, and when treatment may harm the patient, physicians should try to obtain support from the family to discontinue life support, Schafer says.
If a patient turns out to be conscious while in an unresponsive state, as Owen's techniques may be able to detect, the situation could be even worse, Schafer says. "It just means you're having experiences of being trapped in a body with pain and discomfort, with no possibility of benefit."
Schafer acknowledges that some people believe that prolonging life itself is a benefit. But, he argues, "There aren't many people in our society who believe that and there are even fewer who believe that scarce health-care resources should be spent on keeping people biologically alive when their human, personal life is irreversibly lost."
For the time being, Owen's techniques, developed using state-of-the-art research scanners, are not yet available for regular use at local hospitals. Although he and his team have found that many of their techniques could work on standard hospital scanners, more needs to be done to ensure the results can be readily interpreted by clinical staff, he says.
Even then, these scans will not likely be applicable for all patients whose state of consciousness is unclear.
For example, some patients brought into a hospital's critical-care unit may be extremely agitated or in pain and require sedation.
When doctors aren't able to have end-of-life discussions with patients themselves, they often have to approach the delicate subject with the patient's caregiver or family members, says Dr. Paul Hébert, a professor of medicine and an intensive-care physician at le Centre hospitalier de l'Université de Montréal (CHUM).
From a doctor's perspective, these discussions typically involve presenting the evidence of what is known about the situation, what the likely outcomes may be, given that evidence, and most importantly, understanding the patient – what their values are, their expectations and ideology, Hébert says.
"If the family is very reticent to go anywhere close to limiting care in any way, most of us will not be forceful," he says. "We'll just try to understand the family, understand their perspective, and we simply outline what we think."
To make a choice about whether to proceed with aggressive treatment, families should be informed about what those treatments are, the possible risks and benefits and what the ultimate outcomes are, he says. While some people value quality of life, others value life at all cost, and may drop hints about where they stand, such as expressing where there's life, there's hope, Hébert says.
"As soon as they say words like that … generally, it's code for, 'You'd better never quit on my husband,' you know? 'You're going to do everything possible, right, Doc?'"
Hébert says he doesn't know enough about Owen's work to say how it might affect clinical practice.
Currently, doctors try their best to communicate with individuals who have severe brain injury, but for all kinds of reasons that may not be possible, he says. "If the suggestion is a lot of these people are completely cognitively intact, fully aware as a person, and we're completely missing it, to be honest, that scares the bejeezus out of me," he says.