Most 'Locked-In Syndrome' Patients Happy, Survey Finds

THURSDAY Feb. 24, 2011 -- Most "locked-in syndrome" patients -- a condition caused by brain stem injury -- claim to be happy, according to a new study.

People with locked-in syndrome are fully conscious but can't move or communicate, except through eye movements or blinking. Patients with the condition can live for decades.

In the new study, researchers surveyed 91 locked-in syndrome patients in France about their medical history, emotional state, and their views on end-of-life issues. About two-thirds of the patients had a partner and lived at home and 70 percent had religious beliefs, the investigators found.

Even though more than half of the patients acknowledged severe limitations on their ability to lead a normal life as a member of their community and 20 percent said they couldn't take part in everyday activities that they considered important, 72 percent of the patients said they were happy.

The finding that nearly three-quarters of the patients report being happy challenges the widespread belief that locked-in syndrome patients should be candidates for euthanasia or assisted suicide due to poor quality of life, the researchers pointed out.

The 28 percent of patients who said they were unhappy cited issues such as difficulty getting around, restrictions on recreational/social activities, and the challenges of coping with life events.

Among patients who had been affected by locked-in syndrome for less than one year at the time of the survey, feeling anxious and not recovering speech were also associated with being unhappy.

Among the 59 patients who responded to a question regarding whether they wanted to opt for euthanasia, only four (7 percent) said yes, the researchers noted.

"Our data show that, whatever the physical devastation and mental distress of [these] patients during the acute stage of the condition, optimal life-sustaining care and revalidation can have major long-term benefit," Marie-Aurelie Bruno, of the University Hospital of Liege in Belgium, and colleagues wrote in their report published Feb. 23 in the first issue of the new online journal BMJ Open.

"We suggest that patients recently struck by locked-in syndrome should be informed that, given proper care, they have a considerable chance of regaining a happy life. In our view, shortening-of-life requests by locked-in syndrome patients are valid only when the patients have been given a chance to attain a steady state of subjective well-being," they concluded.

More information

The U.S. National Institute of Neurological Disorders and Stroke has more about locked-in syndrome.

Posted: February 2011


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