title: A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome.
abstract: OBJECTIVE
  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.
authors.affiliation: Coma Science Group, Cyclotron Research Centre & Neurology Department , University and University Hospital of Liège, Liège , Belgium .
authors.forename: Athena
authors.initials: A
authors.lastname: Demertzi
authors.forename: Ralf J
authors.initials: RJ
authors.lastname: Jox
authors.forename: Eric
authors.initials: E
authors.lastname: Racine
authors.forename: Steven
authors.initials: S
authors.lastname: Laureys
mesh_terms: D016223:Advance Directives / Q000941:ethics / Q000523:psychology; D001291:Attitude of Health Personnel; D001293:Attitude to Death; D005060:Europe / Q000453:epidemiology; D005190:Family; D006306:Health Surveys; D006801:Humans; D058748:Pain Perception; D011782:Quadriplegia / Q000453:epidemiology / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires; D028761:Withholding Treatment / Q000941:ethics*
keywords: Attitudes; family; locked-in syndrome; minimally conscious state; pain perception; survey; vegetative state/unresponsive wakefulness syndrome