A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority.

[locked-in syndrome]

Objectives Locked-in syndrome (LIS ) consists of anarthria and quadriplegia while consciousness is preserved . Classically , vertical eye movements or blinking allow coded communication . Given appropriate medical care , patients can survive for decades . We studied the self-reported quality of life in chronic LIS patients . Design 168 LIS members of the French Association for LIS were invited to answer a questionnaire on medical history , current status and end-of-life issues . They self-assessed their global subjective well-being with the Anamnestic Comparative Self-Assessment (ACSA ) scale , whose +5 and -5 anchors were their memories of the best period in their life before LIS and their worst period ever , respectively . Results 91 patients (54 %) responded and 26 were excluded because of missing data on quality of life . 47 patients professed happiness (median ACSA +3 ) and 18 unhappiness (median ACSA -4 ). Variables associated with unhappiness included anxiety and dissatisfaction with mobility in the community , recreational activities and recovery of speech production . A longer time in LIS was correlated with happiness . 58 % declared they did not wish to be resuscitated in case of cardiac arrest and 7 % expressed a wish for euthanasia . Conclusions 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 . End-of-life decisions , including euthanasia , should not be avoided , but a moratorium to allow a steady state to be reached should be proposed .

Diseases
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Diseases presenting "extra palliative efforts" symptom

locked-in syndrome

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