[Ethical aspects for substitute decisions and their reversion in amyotrophic lateral sclerosis]

Related to its clinical characteristics, amyotrophic lateral sclerosis (ALS) is a paradigm of the ethical difficulties due to a chronic and relentless fatal disease. Its fatal evolution in relation with a respiratory failure, but mainly the choices imposed by the respiratory insufficiency at the end of live, makes that the medical team faces very difficult situations. These situation can be solved only case per case, with repeated discussion with the patients and its relatives. The appeal to the shared dossier becomes essential in this approach. It makes easier the communication, and the appropriation and sharing of information and knowledge that are necessary to anticipate the end of life decisions. ALS sparks off constantly renewed dilemmas.