Brain death in children: why does it have to be so complicated?

The authors appreciate the editorial comments by Wijdicks and Smith and would like to address concerns about why the diagnosis of brain death in pediatric patients has to be ‘‘so complicated.’’ This revised clinical guideline focused specifically on determining brain death and deliberately excluded issues related to ethical concerns and organ donation. Failure to mention the Child Neurology Society (CNS) as the third sponsoring society of this guideline is a major oversight of the editorial. CNS provided significant review by Practice Committee members and the society’s Executive Board. The quality of evidence provided in this guideline was equivalent to, if not more comprehensive than, the revised American Academy of Neurology (AAN) guideline, which reported only class III or IV evidence for 4 of 5 questions posed. We used the GRADE system to develop a consensus guideline because no class I or II studies to determine pediatric brain death exist. Interestingly, the AAN is currently revising guideline development for practicing neurologists to use a modification of the GRADE system. A wide range of clinical entities can result in brain death in newborns, children, and adolescents. The guideline, the checklist, and Table 3 clearly state that all reversible conditions should be excluded prior to the first brain death examination. However, some uncertainty in the newborn period still exists leading to agebased observation periods. These consensus based recommendations reflect extensive clinical experience across several pediatric disciplines. Additionally, provisions for pediatric trauma patients and neonates were included. Virtually every committee member has cared for acutely injured children who met examination criteria for brain death within the initial 24 hours. Some recovered brain function although most did not which is why 2 examinations over defined time periods is recommended. The recommended time periods are consensus based rather than arbitrary time periods. Neurologic examination findings remaining unchanged and consistent with brain death throughout the observation period was one of the recommended criteria for determining brain death in the 1987 guidelines. The committee retained this recommendation in the current update. We agree that apparent neurologic improvements reported in anecdotal cases are due to diagnostic errors when critically examined; this is precisely the reason why a change in findings between examinations implies the neurological process is potentially reversible, precluding the diagnosis of brain death. The revised guideline repeatedly states that brain death is a clinical diagnosis, and factors influencing the neurologic examination must be corrected before initiating brain death evaluation and apnea testing. Ancillary studies do not trump the neurological examination, and we clearly state that ancillary studies should not be viewed as a substitute for the neurologic examination. However, situations exist where ancillary studies are helpful to determine death. The revised guideline and checklist have simplified and clarified many previous sources of confusion. Additionally, the checklist will help standardize determination and documentation of brain death in children. Prolonging declaration of death does not appear to be a major concern in children—perhaps differing from the experience in adults. Families appreciate the added certainty conferred by the second examination. Patients in children’s hospitals rely on assessments by pediatric specialists who understand the unique needs of children and their families. The approach to caring for children is very different and likely more family centered. These issues are further addressed in the full guideline and we encourage readers to review the entire document published in Critical Care Medicine and Pediatrics. Declaring brain death in children is complicated and should be undertaken by physicians who are adequately trained in the complexities involved in this important determination. We agree more research is needed to address some of the other issues raised in the editorial, and we again thank Drs Wijdicks and Smith for their opinion.