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A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome.
[locked-in syndrome]
Patients
with
locked-
in
syndrome
often
self-report
a
higher
quality
of
life
than
generally
expected
.
This
study
reports
third
-person
attitudes
towards
several
salient
issues
on
locked-
in
syndrome
.
Close-ended
survey
among
conference
attendees
from
33
European
countries
.
Analysis
included
chi
-square
tests
and
logistic
regressions
.
From
the
3332
respondents
(
33
%
physicians
,
18
%
other
clinicians
,
49
%
other
professions
;
47
%
religious
)
,
90
%
agreed
that
patients
with
locked-
in
syndrome
can
feel
pain
.
The
majority
(
75
%
)
disagreed
with
treatment
withdrawal
,
but
56
%
did
not
wish
to
be
kept
alive
if
they
imagined
themselves
in
this
condition
(
p
<
0
.
001
)
.
Religious
and
southern
Europeans
opposed
to
treatment
withdrawal
more
often
than
non-religious
(
p
<
0
.
001
)
and
participants
from
the
North
(
p
=
0
.
001
)
.
When
the
locked-
in
syndrome
was
compared
to
disorders
of
consciousness
,
more
respondents
endorsed
that
being
in
a
chronic
locked-
in
syndrome
was
worse
than
being
in
a
vegetative
state
or
minimally
conscious
state
for
patients
(
59
%
)
than
they
thought
for
families
(
40
%
,
p
<
0
.
001
)
.
Personal
characteristics
mediate
opinions
about
locked-
in
syndrome
.
The
dissociation
between
personal
preferences
and
general
opinions
underlie
the
difference
in
perspective
in
disability
.
Ethical
responses
to
dilemmas
involving
patients
with
locked-
in
syndrome
should
consider
the
diverging
ethical
attitudes
of
stakeholders
.