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Attitudes towards end-of-life issues in disorders of consciousness: a European survey.
[locked-in syndrome]
Previous
European
surveys
showed
the
support
of
healthcare
professionals
for
treatment
withdrawal
[
i
.
e
.
,
artificial
nutrition
and
hydration
(
ANH
)
in
chronic
vegetative
state
(
VS
)
patients
]
.
The
recent
definition
of
minimally
conscious
state
(
MCS
)
,
and
possibly
research
advances
(
e
.
g
.
,
functional
neuroimaging
)
,
may
have
lead
to
uncertainty
regarding
potential
residual
perception
and
may
have
influenced
opinions
of
healthcare
professionals
.
The
aim
of
the
study
was
to
update
the
end-of-life
attitudes
towards
VS
and
to
determine
the
end-of-life
attitudes
towards
MCS
.
A
16
-
item
questionnaire
related
to
consciousness
,
pain
and
end-of-life
issues
in
chronic
(
i
.
e
.
,
>
1
year
)
VS
and
MCS
and
locked-
in
syndrome
was
distributed
among
attendants
of
medical
and
scientific
conferences
around
Europe
(
n
=
59
)
.
During
a
lecture
,
the
items
were
explained
orally
to
the
attendants
who
needed
to
provide
written
yes
/
no
responses
.
Chi
-square
tests
and
logistic
regression
analyses
identified
differences
and
associations
for
age
,
European
region
,
religiosity
,
profession
,
and
gender
.
We
here
report
data
on
items
concerning
end-of-life
issues
on
chronic
VS
and
MCS
.
Responses
were
collected
from
2
,
475
participants
.
For
chronic
VS
(
>
1
year
)
,
66
%
of
healthcare
professionals
agreed
to
withdraw
treatment
and
82
%
wished
not
to
be
kept
alive
(
P
<
0
.
001
)
.
For
chronic
MCS
(
>
1
year
)
,
less
attendants
agreed
to
withdraw
treatment
(
28
%
,
P
<
0
.
001
)
and
wished
not
to
be
kept
alive
(
67
%
,
P
<
0
.
001
)
.
MCS
was
considered
worse
than
VS
for
the
patients
in
54
%
and
for
their
families
in
42
%
of
the
sample
.
Respondents
'
opinions
were
associated
with
geographic
region
and
religiosity
.
Our
data
show
that
end-of-life
opinions
differ
for
VS
as
compared
to
MCS
.
The
introduction
of
the
diagnostic
criteria
for
MCS
has
not
substantially
changed
the
opinions
on
end-of-life
issues
on
permanent
VS
.
Additionally
,
the
existing
legal
ambiguity
around
MCS
may
have
influenced
the
audience
to
draw
a
line
between
expressing
preferences
for
self
versus
others
,
by
implicitly
recognizing
that
the
latter
could
be
a
step
on
the
slippery
slope
to
legalize
euthanasia
.
Given
the
observed
individual
variability
,
we
stress
the
importance
of
advance
directives
and
identification
of
proxies
when
discussing
end-of-life
issues
in
patients
with
disorders
of
consciousness
.
Diseases
Validation
Diseases presenting
"pain"
symptom
achondroplasia
acute rheumatic fever
adrenal incidentaloma
adrenomyeloneuropathy
aniridia
aromatase deficiency
carcinoma of the gallbladder
cholangiocarcinoma
coats disease
congenital diaphragmatic hernia
congenital toxoplasmosis
cushing syndrome
cutaneous mastocytosis
cystinuria
dedifferentiated liposarcoma
dentin dysplasia
dracunculiasis
dystrophic epidermolysis bullosa
epidermolysis bullosa simplex
erdheim-chester disease
erythropoietic protoporphyria
esophageal adenocarcinoma
esophageal carcinoma
esophageal squamous cell carcinoma
fabry disease
familial mediterranean fever
focal myositis
hirschsprung disease
hodgkin lymphoma, classical
holt-oram syndrome
junctional epidermolysis bullosa
kabuki syndrome
kindler syndrome
lamellar ichthyosis
liposarcoma
locked-in syndrome
lymphangioleiomyomatosis
malignant atrophic papulosis
neuralgic amyotrophy
oligodontia
oral submucous fibrosis
papillon-lefèvre syndrome
phenylketonuria
pleomorphic liposarcoma
primary hyperoxaluria type 1
proteus syndrome
pyomyositis
scrub typhus
sneddon syndrome
systemic capillary leak syndrome
thoracic outlet syndrome
trochlear dysplasia
typhoid
von hippel-lindau disease
waldenström macroglobulinemia
well-differentiated liposarcoma
wolf-hirschhorn syndrome
This symptom has already been validated