Dificultades en la toma de decisiones en la fase final de la vida de un niño con atrofia muscular espinal

The majority of the dilemmas in palliative care occur during the final moments of life. An additional and important problem occurs in paediatrics where in the majority of cases the principles of autonomy cannot be accounted due to the young age of the child. This leaves the decision making to its caretakers, who together with the paediatricians aim to reach an agreement which must be in the best interest of the patient. Here we present the ethical difficulties in the management of a seven months old infant suffering from a progressive neuromuscular disease during the final stage of life.