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How to seek the best interests of the child in palliative care? Analysis of 2 complex case studies

Brigitte De Terwangne, Corinne Tonon, Dominique Bellis, Muriel Freson, Noémie Watterman, Julie Maelfeyt

Research Framework: In the context of the mission of a pediatric liaison team specializing in pediatric palliative care (PPC) in Belgium, this article analyzes the decision-making issues in the face of the best interests of the child in a study of two complex clinical cases that impacted this team and made them question their professional approach.

Objective: This article highlights the notion of the best interests of the child based on decision-making issues related to his/her health. When parents and the health care team disagree about the treatment of a child in pediatric palliative care, we will analyze the issues related to the shared decision-making process (SDP) and the ethical factors to identify avenues of understanding and their solutions.

Methodology: We have chosen as a method the study of 2 complex clinical cases experienced at home by a liaison team specialized in PPC. This qualitative method makes it possible to analyze the situation in its singularity and globality. It is an intrinsic case study, based on a practical problem encountered, a personal confrontation with a given complex professional situation (Duport, 2020).

Results: Our research exposes the complexity of the decision-making trajectory and the need to take into account the systems of influence in decision-making, as well as the importance for the care team to step back and have an ethical reading grid adapted to the given situation.

Conclusions: The management of a seriously ill child followed in a PPC is progressive and non-linear. Formalized shared decision-making (SDP) between the doctor, the child and his parents, and the health care team allows for the consideration of all the components involved in this process and aims to respect the best interests of the child. The different criteria create a climate of trust that is essential for the proper care of the child.

Contributions: Blocking in the therapeutic relationship is a symptom of loss of trust with the risk of withdrawal, but systems can sometimes self-generate their own solution, which demonstrates the importance of developing and training teams in the shared decision-making approach.