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

作者：Demertzi Athena^*; Jox Ralf J; Racine Eric; Laureys Steven

来源：Brain Injury, 2014, 28(9): 1209-1215.

DOI：10.3109/02699052.2014.920526

• Attitudes
• family
• locked-in syndrome
• minimally conscious state
• pain perception
• survey
• vegetative state/unresponsive wakefulness 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. %26lt;br%26gt;Methods: Close-ended survey among conference attendees from 33 European countries. Analysis included chi-square tests and logistic regressions. %26lt;br%26gt;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%26lt;0.001). Religious and southern Europeans opposed to treatment withdrawal more often than non-religious (p%26lt;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%26lt;0.001). %26lt;br%26gt;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.

• 出版日期2014