Parents’ participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing

Abstract

The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited to imposing a duty to provide information to doctors. Decisions are taken at the end of a collegial meeting (CM) intended to better inform the child's referring physician (RP) who is in charge of the final decision following the French law. The aim of this study was to describe the support provided to bereaved families after they had been invited to attend a CM concerning their child, if they so wished. Additional aims were to determine the differences resulting from their acceptance or their refusal to participate as regards their perception of their child's history and as regards their grieving process. We conducted a retrospective study of all CMs held between November 2016 and May 2021, drawing a distinction between proposals made or not made to parents and their decision to accept or refuse. In total, 49 CMs concerning 46 children were held during the study period. The proposal was not made to the parents in three cases; the parents chose to be present in 28 cases. The psychological follow-up (15/28 parents attending, 10/16 parents absent) illustrated that their presence enabled them to reflect on their child's death after having listened to and understood the reasons why it happened. They did not dispute the team's approach or decisions taken. It is possible to include parents in CMs if they so wish. It would appear more beneficial than merely providing them with the information required. Studies must be carried out to ensure potential long-term benefit.