Arrêter la réanimation chez l'enfant « grand prématuré » : qui décide ?

The recent mediatization of a decisional conflict between parents and doctors about withdrawal of life sustaining treatment for an extremely preterm infant challenges the parental posture in the medical decisions concerning their child. The 22/04/2005 law asserts that the decision of withholding or withdrawal of life sustaining treatment for an incompetent patient is a medical concern. However, regardless of the parental rights, the implication of parents in key decisions is encouraged by the National Consultative Committee of Ethics and medical experts. Nevertheless, the dominance of the medical opinion on the parental one, based on the principle of beneficence for the child and his parents (decreasing guilt and facilitating mourning) can damage parents' autonomy and their feeling of parenthood. It is important to keep in mind that the decision process is often based on uncertainty: medical - usually based on statistics -, parental - what decision could be the best one, none not being acceptable -, and temporal uncertainty - conjugating parental and medical temporalities being a challenge. The current concept of shared decision, that is emerging, proposes a multimodal decision-making process that is neither paternalist, nor autonomist, integrating potential involvement of parents: it implies an intense and followed communication; but sometimes such an adjusted communication and respect of medical and parents' own roles cannot be achieved because parents' way is not synchronized to the medical point of view. To defend the best interest of the child and to take care of the parenthood at the same time is a real ethical challenge.