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

Abstract

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.

• Attitudes
• family
• locked-in syndrome
• minimally conscious state
• pain perception
• survey
• vegetative state/unresponsive wakefulness syndrome

Acknowledgements

A.D. is a Postdoctoral Researcher at the Belgian National Funds for Scientific Research (F.N.R.S.), R.J.J. is an Assistant Professor for medical ethics at the University of Munich, E.R. receives a career award from the Fonds de recherche du Québec – Santé, S.L. is Research Director at the Belgian National Fund of Scientific Research (F.N.R.S.). This work was further supported by the European Commission, the James McDonnell Foundation, the European Space Agency, Mind Science Foundation, the French Speaking Community Concerted Research Action, the Belgian Interuniversity Attraction Pole, the Public Utility Foundation ‘Université Européenne du Travail’, ‘Fondazione Europea di Ricerca Biomedica’ and the University and University Hospital of Liège.

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Supplementary Materials

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