London: You are awake, aware and 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 paralysed 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 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.
Thoughts
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 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." 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.
"That some locked-in syndrome patients self-report happiness may suggest they have succeeded in adapting to their condition of extreme disability," said Laureys.
