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LONDON — You are awake, aware and probably unable to move or talk — but you are not necessarily unhappy, says the largest study of locked-in syndrome ever conducted.
A surprising number of patients with the condition say they are happy, despite being paralyzed and having to communicate mainly by moving their eyes. Most cases are caused by major brain damage, often sustained in traumatic accidents.
As part of the study — published in the online journal BMJ Open on Wednesday, Dr. Steven Laureys of the Coma Science Group at the University Hospital of Liege in Belgium and colleagues sent questionnaires to 168 members of the French Association for Locked-in Syndrome, asking them about their medical history, their emotional state and views on euthanasia.
Sixty-five patients used a scale to indicate their sense of well-being, with 47 saying they were happy and 18 unhappy. They were also asked a variety of questions about their lives, including their ability to get around or participate in social functions, or if they had ever considered euthanasia.
Only a handful of patients said they often had suicidal thoughts. The patients responded to questions largely by blinking.
Adrian Owen, a neuroscientist at the University of Western Ontario in Canada, said of the results: "We cannot and should not presume to know what it must be like to be in one of these conditions."
"Many patients can find happiness in ways that we simply cannot imagine," he said via e-mail. He was not linked to the study.
Laureys and colleagues said the findings should change not only how patients are treated, but people's attitudes toward euthanasia.
They said if patients with locked-in syndrome are properly cared for, they can live for decades. With rehabilitation, many patients can regain some control of their head, fingers, and feet and may be able to talk a little.
"That some locked-in syndrome patients self-report happiness may suggest they have succeeded in adapting to their condition of extreme disability," said Laureys and his colleagues.
Laureys said that patients' requests for euthanasia "should be received with sympathy, but our data suggest that a moratorium should be proposed" until the patients' condition has stabilized. Laureys and colleagues noted the longer a person had locked-in syndrome, the more likely he or she was to be content.
Previous research shows people with extreme disabilities can be happy in what is known as "the disability paradox," meaning that even people who have a very limited daily existence, report being happy, contrary to what many experts had assumed.
Tom McMillan, a professor of clinical neuropsychology at the University of Glasgow, said it wasn't surprising this also appeared to be the case for people with locked-in syndrome. In previous cases, McMillan has found some of these patients were happy, had a sense of humor and wanted to live despite previous court applications to withdraw life support.
Scientists have long thought happiness doesn't fluctuate wildly and that the effects of good or bad events, like marriage, a raise or disability, fade with time.
The researchers acknowledged the results may be biased since the study was based on a select group and might not apply to locked-in patients in general. Patients also answered the survey with a caregiver or family member present, which may have influenced answers.
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