Patients with Locked-In Syndrome Generally Satisfied with Life

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Imagine that you are fully conscious and able to hear, see, and understand what is going on around you, but you are unable to move your arms and legs and not able to speak. Do you think that you could be happy? Believe it or not, many patients who have this condition, called locked-in syndrome, report that they have adapted to their situation and are generally happy with their lives.

Locked-in Syndrome is a rare condition usually caused by traumatic brain injury, stroke, or damage to the myelin sheath of the nerve cells. The patients are aware and awake, and have no loss of cognitive function. While some patients may have the ability to move certain facial muscles, most cannot chew, swallow, or speak.

In the largest study of locked-in syndrome patients ever conducted, Dr. Steven Laureys of the Coma Science Group at the University Hospital of Liege in Belgium and colleagues assessed the well-being of 91 members of the French Association for Locked-in Syndrome using questionnaires. The patients responded to the questions about their medical history, their emotional state and views on euthanasia by blinking.

Seventy-two percent of the patients said they were happy despite severe limitations on their ability to lead a normal life or participate in activities they considered important. Dr. Laurey’s team found that the longer a person had locked-in syndrome, the more likely he or she was content.

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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 is assumed. Dr. Laureys said, “That some locked-in syndrome patients self-report happiness may suggest they have succeeded in adapting to their condition of extreme disability.”

He suggests that his findings should change how these patients are treated, as if they are properly cared for, they can live for decades. With rehabilitation, some may even regain control of some muscle function and speech.

Dr. Laureys also said that this should change people’s views about euthanasia or assisted suicide. Only 7% of the respondents answered positively to a question on whether they wanted to opt for euthanasia. Dr. Laurey suggested that a patient’s request to die "should be received with sympathy, but that a moratorium should be proposed" until the patients' condition has stabilized, noting that patients who have been affected for less than one year were most unhappy.

The researchers do acknowledge certain limitations in their study. For instance, patients answered the questionnaire with a caregiver or family member present, which may have influenced the answers.

"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, wrote in the report published Feb. 23 in the first issue of the new online journal BMJ Open.

Journal Reference:
Marie-Aurélie Bruno, Jan L Bernheim, Didier Ledoux, Frédéric Pellas, Athena Demertzi, Steven Laureys. A Survey on Self-Assessed Well-Being in a Cohort of Chronic Locked-In Syndrome Patients: Happy Majority, Miserable Minority. BMJ Open, 23 February 2011 DOI:10.1136/bmjopen-2010-000039

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