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Over the last decade, several commentators have speculated that these patients might be suffering in this state, including a recent First Opinion claiming that covertly conscious patients were being subject to “a form of unwitting medical torture.”
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But is this the right way to think about these patients? We think not.
In general, patients with unresponsive wakefulness syndrome weren’t perfectly healthy one minute and prisoners in their bodies the next. These are individuals who have suffered catastrophic brain injuries and, after weeks, months, or even years of treatment and gradual recovery, emerge into a very strange place to which we on the outside have little access. We now know that some of these patients are conscious. But we really don’t know what their mental lives are like.
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Our recently developed quality of life measure may shed light on these questions. The possibility that some patients may be suffering worries us. But so does the possibility of withdrawing care from someone whose life is worth living. These decisions mustn’t be made guided by hunches.
