Anticipation et incertitude dans les situations où des malformations à fort potentiel létal sont diagnostiquées avant la naissance : l'enjeu des soins palliatifs

When a severe fetal malformation is diagnosed in utero, the mother may choose between termination of pregnancy or to continue the pregnancy with the hope of meeting the child alive and accompanying him/her in his/her life in palliative care. Teams trained in palliative care in the perinatal period can answer appropriately to questions about the malformation, the course of pregnancy, the childbirth, the pain the baby may possibly feel, his/her life, and the care that will be provided. Medical practice leads us to eliminate the diagnostic uncertainty; when all additional examinations have been performed, which conclude to a poor prognosis for a fetus or a newborn thereby opening the field of palliative approach, a fringe of irreducible uncertainty is left that often induces guilt in health care staff. But anticipation is not intended to completely evacuate the shadows. Rather, uncertainty prompts hope that allows the couple to live. Doctors must learn to integrate uncertainty positively in their practice. It is necessary that a close link is established between professionals and parents during the decision-making process and when the baby is born. When parents and professionals have been through this journey together and have been able to say goodbye to the child, it is likely that the mental health of the family is preserved. Everyone - family members and professionals - will mourn and recover.