Self-assesed wellbeing in the locked-in syndrome (Bruno et al, 2010)
BNCI research may serve to provide an extra modality for control over assitive technology for persons with the locked-in syndrome. Having control over assistive technology may mean that you can maintain or increase your quality of life.
The general audience and many physicians usually assume that quality of life of locked-in patients is low and that such a life is not worth living. One neurologist has even asked the question that "even when you can communicate with a locked-in patient, should you?". He reasoned that BNCI technologies might compel patients to accept life-sustaining treatment more often and that they are thus, at greater risk to have a low quality of life.
Fortunately, this neurologist, the general audience and physicians have been proven consistently wrong. Quality of life in the locked-in syndrom is rated as satisfactory to good by most patients and most patient do consider their lifes worth living. A recent study by Bruno et al (2010) support this findings. Please find the abstract and a link to the paper below.
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.
Click here for the full article.