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

Détails

ID Serval
serval:BIB_14CE26AA4986
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome
Périodique
Brain Inj
Auteur(s)
Demertzi A., Jox R. J., Racine E., Laureys S.
ISSN
1362-301X (Electronic)
ISSN-L
0269-9052
Statut éditorial
Publié
Date de publication
2014
Volume
28
Numéro
9
Pages
1209-15
Langue
anglais
Notes
Demertzi, Athena
Jox, Ralf J
Racine, Eric
Laureys, Steven
eng
Research Support, Non-U.S. Gov't
England
2014/06/10 06:00
Brain Inj. 2014;28(9):1209-15. doi: 10.3109/02699052.2014.920526. Epub 2014 Jun 9.
Résumé
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.
Mots-clé
*Advance Directives/ethics/psychology, *Attitude of Health Personnel, *Attitude to Death, Europe/epidemiology, Family, Health Surveys, Humans, *Pain Perception, Quadriplegia/epidemiology/*psychology, Quality of Life/psychology, Surveys and Questionnaires, Withholding Treatment/*ethics, Attitudes, locked-in syndrome, minimally conscious state, pain perception, survey, vegetative state/unresponsive wakefulness syndrome
Pubmed
Création de la notice
14/07/2017 9:08
Dernière modification de la notice
20/08/2019 12:43
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