La place des parents dans le processus décisionnel face aux limitations et arrêts des traitements actifs en pédiatrie

The relationships established between parents of pediatric patients and healthcare professionals evolve over time. The former paternalistic model is giving way to a more autonomous model. These changing relationships have occurred in parallel with changes in legal regulations, particularly the law of April 22, 2005 in France concerning limitations on treatment withdrawal. The new legal obligations require careful thought to ensure appropriate, ethical application, particularly in this transition period from the paternalistic to the autonomous model. In certain situations, it might be inappropriate to place parents in the position of decision makers for treatment withdrawal. For others not inviting their active participation would be equally inappropriate. The role of the parents and what it means to be a parent is largely defined culturally and should be taken into consideration, particularly in stressful situations where the end-of-life of the child is at stake. The purpose of this article is to help hospital teams become more aware of their particular practices, in an attempt to improve parent participation (if appropriate) in the decision-making process for treatment withdrawal.