Technology, legal knowledge and citizenship

3 Technology, legal knowledge and citizenship On the care of Locked-­in Syndrome patients Fernando Dominguez Rubio and Javier Lezaun 1 Introduction T F Pr oo f On the morning of 12 July 1999, Jose C., then thirty-­three years old, sud- denly fainted when he was about to take a shower. After days of close mon- itoring in the hospital, during which he showed no sign of consciousness, the doctors concluded that he had suffered a stroke that had left him in a persistent vegetative state. The medical team informed Jose’s wife and family that, given the extensive physiological and neurological damage the stroke had caused, it was highly unlikely he would survive longer than two months. Over the weeks that followed this devastating diagnosis, Jose’s wife, Maria, identified what seemed to be a barely noticeable pattern in the movement of his right-­hand index finger. She alerted the medical team, but the doctors dismissed the idea that the movement could be a sign of conscious brain activity, attributing it instead to the sort of spasmodic muscle contraction typical of patients in vegetative states. Four months after the initial stroke, however, and as the result of Maria’s dogged insist- ence, the medical team acceded to perform additional tests to discard the possibility of conscious action. To their surprise, the results showed that despite the damage the stroke had caused to Jose’s nervous system he remained fully aware and conscious, capable of hearing, understanding, reasoning and commanding the movement of his right-­hand index finger. The medical team reversed its initial assessment and diagnosed him with Locked-­in Syndrome. Locked-­in Syndrome (hereafter LIS), also known as coma vigilante, is a rare neurological disorder normally caused by infarct, haemorrhage, or trauma leading to a brainstem lesion. It entails complete paralysis of nearly all the voluntary muscles of the body, except for vertical eye movement. Outwardly LIS patients resemble those in vegetative states, but there is a crucial difference: LIS patients remain fully aware and conscious, with their intellective capabilities intact. Hence the name of the disorder: the individual is locked inside his body, unable to express his consciousness and translate his thoughts and intentions into words or actions. 1 022 03 Politics 03.indd 58