There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

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)