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

Michael Cook

Michael Cook is the editor of MercatorNet.