Most Locked-In Patients Okay With Life

Most patients with nearly complete paralysis report a satisfying 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.

Dissatisfaction Linked to Depression

The survey also asked questions about social function, depression, pain, anxiety, and suicidal thoughts; how they spend their time; whether they wanted resuscitation following cardiac arrest; and if they had contemplated euthanasia.

Laureys and colleagues sent the survey to caregivers for 168 patients registered with the French Locked-In Syndrome Association. Responses were received from 91 patients, of which 65 were complete enough for analysis.

Not surprisingly, respondents who said they were unhappy also tended to be more dissatisfied with specific aspects of their condition, and problems such as depression and anxiety and thoughts of suicide and euthanasia were more common.

Anxiety was particularly predictive of unhappiness, Laureys and colleagues reported. On the other hand, speech production was powerfully predictive of happiness.

Another factor that may help patients maintain a positive attitude is mental discipline, as indicated by blog posts from a patient with locked-in syndrome since 2004.

The patient, an Indianapolis woman whose name is given as Jennifer Ann Lynn, developed the condition at age 30 following a brainstem stroke. Her husband started the blog almost immediately, but Lynn herself began contributing in 2005. She regained some hand movements and was able to control a computer as well as an electric wheelchair.

She also regained some speech ability, but in a post from December 2010, she explained that whispering and shouting were still impossible.

But, Lynn wrote, "I don't usually let myself think that, [because] it's dangerous. It's a matter of perspective: I can't think, "I wish…," "I want…," or dwell on what I can't do."

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