Mental wellbeing

Most patients with "locked-in" syndrome claim to be happy

Most patients with  locked-in  syndrome claim to be happy Less likely to opt for euthanasia that previously thought

Most people suffering from "locked-in" syndrome claim to be happy, according to a survey of patients.

The survey also found that many of the factors that resulted in patients reporting unhappiness could be improved, challenging those who think that such patients are likely candidates for euthanasia.

Locked-in syndrome describes a state in which the person is fully conscious but is unable to move or communicate, except by moving their eyes or blinking. The condition is the result of brain-stem injury, and many sufferers can live for decades in this state.

The study, by scientists at the University of Li├Ęge in Belgium, assessed the mental state of 168 patients by using a self-assessment questionnaire. Of these, 91 replied, with around 70% claiming to have some form of religious views. Two thirds of respondents were living with a partner.

72% of patients who replied said that they were happy. Only 4 expressed any desire to end their lives, despite the fact that most accepted that there were severe restrictions on their ability to reintegrate into society to lead a normal life.

Of those who were unhappy, the main factors were: difficulties getting around, restrictions on recreational/social activities, and coping with life events. Patients who had been living with the syndrome for less than a year also reported that feeling anxious and not recovering speech made them unhappy.

Commenting on the findings, the authors said: "Our data show that, whatever the physical devastation and mental distress of [these] patients during the acute phase of the condition, optimal life sustaining care and revalidation can have major long term benefit."

Taking a more aggressive stance on treatment of anxiety and rehabilitation could have a big impact on patients' quality of life, the researchers said: "We suggest that patients recently struck by [the syndrome] should be informed that, given proper care, they have a considerable chance of regaining a happy life."

This article was published on Thu 24 February 2011

Image © James Steidl -

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