Majority of Locked-In Syndrome Patients Happy

Only 7 percent of chronic locked in syndrome patients wish for euthanasia

MONDAY, March 7 (HealthDay News) -- The majority of self-assessed patients with locked-in syndrome (LIS) say they are happy, according to a study published online Feb. 23 in BMJ Open.

Marie-Aurélie Bruno, from the University of Liège in Belgium, and colleagues studied the quality of life of 65 chronic LIS patients. Members of the French Association for LIS were asked to complete a questionnaire about medical history, current status, and end-of-life issues. On the Anamnestic Comparative Self-Assessment (ACSA) scale, the members assessed their global subjective well-being, giving +5 to the best period in their life before LIS and −5 to their worst period ever.

The investigators found that a longer duration of LIS was associated with happiness compared to those with LIS for less than one year. In total, 47 patients reported happiness (average ACSA, +3) and 18 patients reported unhappiness (average ACSA, −4). Anxiety, lack of mobility, non-recovery of speech production, and lack of recreational activities were associated with unhappiness. Fifty-eight percent of all LIS patients did not want to be resuscitated in case of cardiac arrest, but only 7 percent expressed current wish for euthanasia.

"Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy, meaningful life," the authors write.

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