Desperate desire

However, not all the respondents were satisfied. 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, compared with just under half of the "happy" respondents.

The other cautionary note is that although Laureys invited 168 people to respond, only 91 did so, potentially biasing the results to those who were most motivated in the first place since they were eager to participate. Volunteers also had to complete their questionnaires in cooperation with their carers, which may have meant that they held back on criticism out of loyalty.

Laureys accepts these caveats, but says the results are still representative. "My message is: listen to what these patients have to say," he says.

Of all the respondents, only 7 per cent craved 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.

For this reason, Laureys calls for a moratorium when new patients request euthanasia [in countries that allow it], until they stabilise, both physically and psychologically.

More socialising

Despite the overall message of happiness, the survey picked up considerable dissatisfaction. 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.

Those expressing unhappiness wanted more interaction and mobility in their community, more recreation and better recovery of speech. They also suffered more from anxiety than "happy" respondents.

Laureys says that finding out these shortcomings is important, because they can all be rectified. "Now we've identified some factors we can improve, such as access to mobility in the community, recovery of speech and treatments for anxiety," he says.

Looking further ahead, Laureys believes that improvements in technology-aided communication such as brain-computer interfaces and eye-tracking devices would make life more bearable. "I predict that in coming years, our view of this disease is really going to change," he says. "It makes a huge difference to be able to read a book or go onto the internet at will," he says.

Finding meaning

Joseph Fins, a professor of medicine and authority on the neuroethics of consciousness disorders 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."

Fins cautions, however, that all the participants were members of a particularly active French association that supports people with the condition. This meant that about two-thirds of the respondents were able to live at home, adding to their comfort and sense of belonging. He wonders whether the responses would have been so positive in other countries without such robust support networks. "One of the major challenges is to reduce the isolation of these people," he says.