What medical condition would definitely make life not worth living? At the top of most people’s lists would be locked-in syndrome: complete paralysis and inability to communicate other than by blinking. It was made famous in The Diving Bell and the Butterfly, a book and a film about French journalist Jean-Dominique Bauby.
Surprisingly, though, the largest-ever survey of chronic LIS patients has found that only 28% were unhappy. Very few of them were interested in euthanasia – only 7% -- or had suicidal thoughts.
The author of the study in the new journal BMJ Open, Steven Laureys of the Coma Science Group at the University Hospital of Liege in Belgium, admits that his sample size was small – only 65 patients in France. But his work has confirmed other research into how people adapt to catastrophic misfortune. It also suggested ways to care for these patients. For instance, nearly all of them felt that they were not engaged in worthwhile activities. Many of them wanted more social interaction. For Dr Laureys, this was valuable information. "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.
In fact, he believes that the situation of LIS patients will improve substantially as more sophisticated technology becomes available. "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.
Studies like this challenge people to reassess what makes life worthwhile and “dignified”. In fact, commented a Canadian neuroscientist unconnected to the study, "We cannot and should not presume to know what it must be like to be in one of these conditions. Many patients can find happiness in ways that we simply cannot imagine.”
Obviously it takes a while to adjust to being locked in. Dr Laureys suggests that a year may pass before patients reach a steady level of subjective well-being. Hence requests for euthanasia in the early stages of the disease are not well-informed. He advises that “Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life.”
However, Oxford bioethicist Julian Savulescu delivered a blistering rebuttal to the relatively optimistic picture painted by Dr Laureys. In a letter to the BMJ Open, where the research was published, he declared that not allowing depressed LIS patients to die whenever they wanted, even if they were clearly depressed shortly after their accident, was paternalistic.
“If a competent person does not want to wait, and has been advised of this kind of research and the possibility of adaptation, but still wants to die, he should be allowed to die. It is hard paternalism to keep people alive when they competently and informedly want to die.”
~ AP, Feb 24; New Scientist, Feb 23
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