Most Locked-In Patients Okay With Life

Feb. 24, 2011— -- More than half of patients coping with a form of nearly complete paralysis called locked-in syndrome indicated -- through eye blinks in some cases -- that they were getting some satisfaction in life, though 8 percent had often thought of suicide.

Among 65 patients who had developed the syndrome a median of eight years previously, only 18 characterized their lives as "somewhat on the bad side" or worse, according to Dr. Steven Laureys of the University of Liège in Belgium and colleagues.

Seventeen patients indicated that they felt as well, or almost as well, as in their happiest times before becoming locked-in. Another 21 gave their overall quality of life lesser but still positive marks.

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Writing in the new open-access online journal BMJ Open, the researchers suggested that deeply depressed locked-in patients should be urged to wait before requesting euthanasia, because "there is a high chance they will regain a happy meaningful life."

At the same time, though, Laureys and colleagues said that end-of-life decisions "should not be avoided."

Locked-in syndrome typically results from strokes that create lesions on the brainstem. Patients are fully conscious but completely immobile except for the eyes. They can be taught to communicate with eye movements or blinks, using them to indicate letters on a board when pointed to by a caregiver.

More than 80 percent of patients whose physical condition is stabilized survive at least 10 years. Many patients eventually recover some limb control and speech function -- in the survey, 70 percent of respondents said they could move arms or legs at least a little, and 55 percent were able to speak words or sentences -- but most patients remain permanently dependent on others for daily care.

The survey questionnaire, administered through caregivers as necessary, asked respondents to select one of 11 descriptions of their current happiness level. These ranged from "as well as in the best period" to "as bad as in the worst period" of their lives prior to developing locked-in syndrome.