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The Certainty That We Must Discuss Uncertainty with Parents and How Best to Do That

June 1, 2022

Every day we confront diagnostic and therapeutic situations that present us with uncertainty—and perhaps nowhere is uncertainty more common than in the neonatal and pediatric intensive care units. While we may be taught in medical school and residency about how to have critical conversations with families regarding uncertainty in our clinical decision-making, evaluating what happens in real time could help us improve our care. Prins et al (10.1542/peds.2021-055980) present fascinating findings about this in a study early released in our journal this month.

The authors received permission from care teams in three neonatal intensive care units and three pediatric intensive care units in the Netherlands to audio record their conversations regarding critically ill infants and children. They then qualitatively coded and analyzed the anonymous transcripts. Conversations in this study were categorized as occurring in three phases:

  • Phase 1—When an unstable condition presented and additional diagnostic testing and treatments for the coming days were discussed.
  • Phase 2—When conditions were deteriorating and limited treatment options exists.
  • Phase 3—When imminent death was inevitable and further treatment options futile.

The authors identified strategies to address uncertainty that occurred in all three phases (e.g., checking parent perspective on uncertainty and what strategies would be most helpful, acknowledging the psychological impact of uncertainty, and providing emotional support). What can be done to ensure these strategies are used appropriately?

To answer these questions, we invited medical ethicist and neonatologist Dr. Mark Mercurio from Yale to share with us his thoughts in an accompanying commentary (10.1542/peds.2022-056737). He points out that all conversations regarding uncertainty should focus on priorities for family and for staff caring for a child. He also stresses the importance of conducting these conversations with medical humility, including being honest about our sense of uncertainty rather than feel doing so is a sign of ignorance or weakness. The combination of the findings in this study and commentary are essential reading that will help all of us who engage in critical conversations. Be certain not to miss both articles by linking to them and learning more.

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