What Constitutes the Best Interest of a Child? Views of Parents, Children, and Physicians in a Pediatric Oncology Setting

Background: In pediatrics, the "best interest" standard has become the prevailing standard in decision making even though it proves difficult to apply in practice. Differences in values can lead to different views by families and physicians of what is in the interest of a child. Our aim was to gain insight into the views of parents, children, and physicians in a pediatric oncology setting. Methods: We conducted a qualitative multicenter study, using in-depth semistructured interviews, with 21 children aged 8-18 years undergoing cancer treatment, 26 parents, and 15 pediatric oncologists. Results: At the onset of treatment, parents, children, and physicians had the same views on what is in the interest of the child: survival by following the treatment protocol. In the course of treatment, however, a transition takes place. For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a normal life, having control over certain aspects of treatment, and maintaining one's identity (e.g., through religion). These aspects sometimes collide with medical aspects, leading to different professional and familial views about what course of action is appropriate. Conclusions: In order to recognize personal views and avoid conflicts, physicians should explicitly discuss parent and family concerns and opinions in the course of treatment. We present a model of "communicative ethics" to make these issues a subject of discussion. The role of the family in determining what is in the best interest of the child should only be limited when it implies a substantial medical risk of (irreversible) harm to the child.