Letter to the editor (Scientific journals)
The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
Laureys, Steven; Pellas, Frédéric; Van Eeckhout, Philippe et al.
2005In Progress in Brain Research, 150 (Boundaries of Consciousness: Neurobiology and Neuropathology), p. 495-511
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Keywords :
Humans; Quadriplegia/diagnosis/physiopathology/psychology; Quality of Life; Speech
Abstract :
[en] The locked-in syndrome (pseudocoma) describes patients who are awake and conscious but selectively deefferented, i.e., have no means of producing speech, limb or facial movements. Acute ventral pontine lesions are its most common cause. People with such brainstem lesions often remain comatose for some days or weeks, needing artificial respiration and then gradually wake up, but remaining paralyzed and voiceless, superficially resembling patients in a vegetative state or akinetic mutism, In acute locked-in syndrome (LIS), eye-coded communication and evaluation of cognitive and emotional functioning is very limited because vigilance is fluctuating and eye movements may be inconsistent, very small, and easily exhausted. It has been shown that more than half of the time it is the family and not the physician who first realized that the patient was aware. Distressingly, recent studies reported that the diagnosis of LIS on average takes over 2.5 months. In some cases it took 4-6 years before aware and sensitive patients, locked in an immobile body, were recognized as being conscious. Once a LIS patient becomes medically stable, and given appropriate medical care, life expectancy increases to several decades. Even if the chances of good motor recovery are very limited, existing eye-controlled, computer-based communication technology currently allow the patient to control his environment, use a word processor coupled to a speech synthesizer, and access the worldwide net. Healthy individuals and medical professionals sometimes assume that the quality of life of an LIS patient is so poor that it is not worth living. On the contrary, chronic LIS patients typically self-report meaningful quality of life and their demand for euthanasia is surprisingly infrequent. Biased clinicians might provide less aggressive medical treatment and influence the family in inappropriate ways. It is important to stress that only the medically stabilized, informed LIS patient is competent to consent to or refuse life-sustaining treatment. Patients suffering from LIS should not be denied the right tot die - and to die with dignity - but also, and more importantly, and pain and symptom management. In our opinion, there is an urgent need for a renewed ethical and medicolegal framework for our care of locked-in patients.
Disciplines :
Neurosciences & behavior
Author, co-author :
Laureys, Steven  ;  Université de Liège - ULiège > Centre de recherches du cyclotron
Pellas, Frédéric
Van Eeckhout, Philippe
Ghorbel, Sofiane
Schnakers, Caroline ;  Université de Liège - ULiège > Centre de recherches du cyclotron
Perrin, Fabien
Berre, Jacques
Faymonville, Marie-Elisabeth ;  Université de Liège - ULiège > Services généraux (Faculté de médecine) > Relations académiques et scientifiques (Médecine)
Pantke, Karl-Heinz
Damas, François ;  Université de Liège - ULiège > Services généraux (Faculté de médecine) > Relations académiques et scientifiques (Médecine)
Lamy, Maurice ;  Université de Liège - ULiège > Département des sciences cliniques > Anesthésie et réanimation
Moonen, Gustave  ;  Université de Liège - ULiège > Département des sciences cliniques > Neurologie - Doyen de la Faculté de Médecine
Goldman, Serge
More authors (3 more) Less
Language :
English
Title :
The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
Publication date :
2005
Journal title :
Progress in Brain Research
ISSN :
0079-6123
eISSN :
1875-7855
Publisher :
Elsevier, Amsterdam, Netherlands
Volume :
150
Issue :
Boundaries of Consciousness: Neurobiology and Neuropathology
Pages :
495-511
Peer reviewed :
Peer Reviewed verified by ORBi
Available on ORBi :
since 25 March 2009

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