A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

Objectives: 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.
Methods: Close-ended survey among conference attendees from 33 European countries.
Analysis included chi-square tests and logistic regressions.
Results: 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).
Conclusions: 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.