Reference : The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
Scientific journals : Letter to the editor
Social & behavioral sciences, psychology : Neurosciences & behavior
http://hdl.handle.net/2268/9572
The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
English
Laureys, Steven mailto [Université de Liège - ULg > > Centre de recherches du cyclotron]
Pellas, Frédéric [> > > >]
Van Eeckhout, Philippe [> > > >]
Ghorbel, Sofiane [> > > >]
Schnakers, Caroline mailto [Université de Liège - ULg > > Centre de recherches du cyclotron >]
Perrin, Fabien [> > > >]
Berre, Jacques [> > > >]
Faymonville, Marie-Elisabeth mailto [Université de Liège - ULg > Services généraux (Faculté de médecine) > Relations académiques et scientifiques (Médecine) >]
Pantke, Karl-Heinz [> > > >]
Damas, François [Université de Liège - ULg > Services généraux (Faculté de médecine) > Relations académiques et scientifiques (Médecine)]
Lamy, Maurice mailto [Université de Liège - ULg > Département des sciences cliniques > Anesthésie et réanimation]
Moonen, Gustave mailto [Université de Liège - ULg > Département des sciences cliniques > Neurologie - Doyen de la Faculté de Médecine]
Goldman, Serge [> > > >]
2005
Progress in Brain Research
Elsevier
150
Boundaries of Consciousness: Neurobiology and Neuropathology
495-511
Yes (verified by ORBi)
International
0079-6123
Amsterdam
The Netherlands
[en] Humans ; Humans ; Quadriplegia/diagnosis/physiopathology/psychology ; Quality of Life ; Speech
[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.
http://hdl.handle.net/2268/9572
10.1016/S0079-6123(05)50034-7

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