How do physicians discuss uncertainty with parents when it is the only certainty?

Published on September 8, 2022 – Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child’s behalf. Prevailing uncertainties make these decisions extremely complex. These decisions can have severe consequences for the child, parents and family. Researchers Sanne Prins and Annemiek Linn, along with colleagues at the Amsterdam UMC, investigated how physicians actually discuss uncertainty with parents.

Adequately communicating uncertainty with parents may be pivotal, as this could improve the decision-making process and parents’ coping in the short and longer term. Yet, little is known about how physicians actually discuss uncertainty with parents of critically ill children in the neonatal and pediatric intensive care unit. In this study, recently published in the medical journal Pediatrics, real-life conversations between physicians and parents were analyzed, from the moment doubts arose whether treatment was still in the child’s best interests.

Physicians adapted the way they discussed uncertainty with parents to the specific phase of the child’s illness and treatment trajectory. When there were still treatment options available, physicians primarily provided explanations or presented short-term action plans of additional diagnostic tests and care. When the child’s death was imminent, physicians rather eliminated most uncertainty. Overall, physicians rarely checked parents’ needs and did not explore what information and what kind of support parents found helpful in dealing with all the uncertainties.

Our insights may help physicians in becoming more aware of how they discuss uncertainties with parents and how they can improve this important part of their communication tailored to parental needs during their critically ill child’s illness and treatment trajectory.

Prins, S., Linn, A. J., van Kaam, A. H. L. C., van de Loo, M., van Woensel, J. B. M., van Heerde, M., Dijk, P. H., Kneyber, M. C. J., de Hoog, M., Simons, S. H. P., Akkermans, A. A., Smets, E. M. A., Hillen, M. A., & de Vos, M. A. (2022). How physicians discuss uncertainty with parents in intensive care units. Pediatrics, 149(6), e2021055980.

Cooperation: Amsterdam UMC, UMCG, Erasmus MC.
Funding: This study is part of the research project FamICom, which was supported by ZonMw.
Project leader: Mirjam de Vos, senior researcher Amsterdam UMC