Most people with ‘locked in’ syndrome are happy: Survey

LONDON - A new survey has found that despite living life using only rudimentary speech or limited movements such as blinking or moving eyes, most people suffering from the ‘locked in’ syndrome are happy with their lives.

In the largest survey ever of the condition, 72 per cent communicated that they were happy with their lot.

“Many rated their quality of life as higher than I would have done,” New Scientist quoted Steven Laureys at the Coma Science Group at the University of Liege in Belgium, as saying.

“That may seem surprising to us looking from the outside, but some patients show enormous capacity to adapt to their new condition,” he added.

The remaining 28 per cent expressed unhappiness with their situation, and of these, 86 per cent said they’d prefer not to be resuscitated after a heart attack.

However, Laureys invited 168 people to respond but only 91 did so, potentially biasing the results.

Added to that is the fact that most people must have completed the survey with the help of their carers, therefore leaving out criticism out of loyalty.

The survey also revealed that of all the participants, only 7 per cent wished for euthanasia.

Also, those who were unhappy tended to be relatively new to their situation, suggesting that given time, people with LIS adapt to and become more accepting of their fate.

So Laureys suggests that until they stabilise, both physically and psychologically, countries should issue a moratorium on euthanasia.

Only 21 per cent said they were engaged most of the day in worthwhile activities. A further 40 per cent wanted more social activity and 12 per cent more recreational opportunities.

According to Laureys, technology will change most of this dissatisfaction around.

“It makes a huge difference to be able to read a book or go onto the Internet at will,” he says.

Joseph Fins, an LIS specialist at Weill Cornell Medical College in New York, agrees. “The results show that contrary to opinion, people adapt and adjust, and with help from their carers they can find meaning even in this state,” he says.

“They have the potential to move beyond the usual caricature, showing they’re real people.”

He cautioned, however, that about two-thirds of the respondents were able to live at home, adding to their comfort and sense of belonging which people in other countries may not have access to.

The study appears in BMJ. (ANI)