Evaluate variability in pediatric brain death (BD) protocols in the United States and alignment between protocols and the 2011 pediatric BD guidelines.

BD accounts for 20% of deaths in PICUs. The pediatric BD guidelines were revised in 2011 by the AAP, CNS and SCCM to improve consistency in BD determination. It is unclear how broadly these guidelines have been incorporated into institutional protocols.

Cross-sectional study of BD protocols from US pediatric hospitals. Protocols published after 2011 were reviewed and coded for details regarding: general procedures, prerequisites, neurologic examination, apnea testing, and ancillary testing. Descriptive statistics summarized variability between protocols and alignment with 2011 guidelines.

132 protocols were obtained and 107 (81%) were published after 2011. 94% defined BD and 97% required the identification of a mechanism of irreversible brain injury. Over 90% described prerequisites in alignment with guidelines. All protocols required a neurological examination, with >90% detailing each brainstem reflex. 85 protocols (79%) had age categories in alignment with guidelines. These protocols required two examinations for all patients. The remaining 22 protocols had variable age categories with 60% requiring one and 40% requiring two examinations. 86% of protocols required two apnea tests. 98% required absent respiratory effort and 63% required the PaCO2 to be ≥60 and ≥20mmHg above baseline for BD determination. 19% of protocols required ancillary testing, although 6% listed “an unclear cause of coma” as an acceptable indication. Acceptable ancillary studies included: radionuclide blood flow (99%), EEG (91%), angiography (62%), CT and MR angiography (18%, 14%), and transcranial doppler (22%).

Pediatric BD protocols published after the 2011 guidelines had substantial variability in many domains, most notably in apnea and ancillary testing, and modest alignment with guidelines. New strategies, grounded in implementation science, are needed to improve uniformity between institutional protocols to ensure consistent BD determination for all patients.