Maladies neuromusculaires mettant en jeu le pronostic vital : intérêt d'une démarche palliative pour les enfants et leurs familles

Traditionally palliative care has been associated with end-of-life care and abandonment of hope. Newer models of palliative care are now being integrated from the time of diagnosis for chronic, life-threatening conditions, creating a new vision of hope for the children and families affected by these disorders. In this paper we describe a broader conceptualization of pediatric palliative care and examine its applicability to two common life-threatening pediatric neuromuscular diseases.