Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child’s behalf. Throughout the child’s illness and treatment trajectory, adequately discussing uncertainties with parents is pivotal because this enhances the quality of the decision-making process and may positively affect the child’s and parents’ well-being. We investigated how physicians discuss uncertainty with parents and how this discussion evolves over time during the trajectory.

We asked physicians working in the NICU and PICU of 3 university medical centers to audio record their conversations with parents of critically ill children from the moment doubts arose whether treatment was in the child’s best interests. We qualitatively coded and analyzed the anonymized transcripts, thereby using the software tool MAXQDA 2020.

Physicians were found to adapt the way they discussed uncertainty with parents to the specific phase of the child’s illness and treatment trajectory. When treatment options were still available, physicians primarily focused on uncertainty related to diagnostic procedures, treatment options, and associated risks and effects. Particularly when the child’s death was imminent, physicians had less “scientific” guidance to offer. They eliminated most uncertainty and primarily addressed practical uncertainties regarding the child’s dying process to offer parents guidance.

Our insights may increase physicians’ awareness and enhance their skills in discussing uncertainties with parents tailored to the phase of the child’s illness and treatment trajectory and to parental needs in each specific phase.
Original languageEnglish
Article numbere2021055980.
Number of pages10
Issue number6
Early online date23 May 2022
Publication statusPublished - 1 Jun 2022


  • decision making, intensive care unit, neonatal intensive care units, pediatric intensive care unit, terminally ill, critically ill children, intensive care, newborn, critical illness, death imminent

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