1Neurology Department and Cyclotron Research Center, University of Lie`ge, Sart Tilman B30, 4000 Liege, Belgium 2Neurorehabilitation Medicine, Hoˆpital Caremeau, CHU Nıˆmes, 30029 Nıˆmes Cedex, France 3Department of Speech Therapy, Hospital Pitie´ Salpe´trie`re, Paris and French Association Locked in Syndrome (ALIS), 225 Bd Jean-Jaures, MBE 182, 92100 Boulogne-Billancourt, France 4Neurosciences et Syste`mes Sensoriels Unite´ Mixte de Recherche 5020, Universite´ Claude Bernard Lyon 1 – CNRS, 69007 Lyon, France 5Intensive Care Medicine, Hoˆpital Erasme, Universite´ Libre de Bruxelles, Route de Lennik 808, 1070 (...) Brussels, Belgium 6Anesthesiology, Reanimation and Pain Clinic, CHU University Hospital, Sart Tilman B33, 4000 Liege, Belgium 7German Association Locked in Syndrome LIS e.V., Evangelischen Krankenhaus Ko¨ningin Elisabeth Herzberge gGmbh (Lehrkrankenhaus der Charite´), Haus 30, Herzbergstrasse 79, 10365 Berlin, Germany 8Intensive Care Medicine, Centre Hospitalier Re´gional de la Citadelle, Boulevard du 12e de Ligne 1, 4000 Liege, Belgium 9Biomedical PET Unit, Hoˆpital Erasme, Universite´ Libre de Bruxelles, Route de Lennik 808, 1070 Brussels, Belgium.. (shrink)

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/UWS) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal of artificial nutrition (...) and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/UWS more respondents agreed with treatment withdrawal when they considered that VS/UWS patients did not feel pain (77%) as compared to those who thought VS/UWS did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (shrink)