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Original Investigation
Caring for the Critically Ill Patient
March 18, 2019

Epidemiology of Brain Death in Pediatric Intensive Care Units in the United States

Author Affiliations
  • 1Department of Anesthesiology and Critical Care Medicine, Children’s Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia
  • 2Department of Neurology, Children’s Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia
  • 3Department of Pediatrics, Children’s Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia
  • 4Centre mère-enfant Soleil du Centre Hospitalier Universitaire de Québec, Université Laval, Quebec City, Quebec, Canada
  • 5Department of Nursing, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania
  • 6Department of Epidemiology and Biostatistics, Dornsife School of Public Health, Drexel University, Philadelphia, Pennsylvania
JAMA Pediatr. 2019;173(5):469-476. doi:10.1001/jamapediatrics.2019.0249
Key Points

Question  What are the epidemiology and clinical characteristics of patients declared brain dead in US pediatric intensive care units (PICUs)?

Findings  In a national database study of 15 344 patients who died in PICUs, brain death occurred in 20.7% of pediatric deaths, primarily in children without preexisting neurological dysfunction and from an acute hypoxic-ischemic injury (52.7%) or brain injury (20.0%). There was a linear association between pediatric intensive care unit size and number of patients declared brain dead per year.

Meaning  Brain death evaluations are performed infrequently, even in large pediatric intensive care units, emphasizing the importance of physician education and protocol standardization to ensure diagnostic accuracy and consistency.

Abstract

Importance  Guidelines for declaration of brain death in children were revised in 2011 by the Society of Critical Care Medicine, American Academy of Pediatrics, and Child Neurology Society. Despite widespread medical, legal, and ethical acceptance, ongoing controversies exist with regard to the concept of brain death and the procedures for its determination.

Objectives  To determine the epidemiology and clinical characteristics of pediatric patients declared brain dead in the United States.

Design, Setting, and Participants  This study involved the abstraction of all patient deaths from the Virtual Pediatric Systems national multicenter database between January 1, 2012, and June 30, 2017. All patients who died in pediatric intensive care units (PICUs) were included.

Main Outcomes and Measures  Patient demographics, preillness developmental status, severity of illness, cause of death, PICU medical and physical length of stay, and organ donation status, as well as comparison between patients who were declared brain dead vs those who sustained cardiovascular or cardiopulmonary death.

Results  Of the 15 344 patients who died, 3170 (20.7%) were declared brain dead; 1861 of these patients (58.7%) were male, and 1401 (44.2%) were between 2 and 12 years of age. There was a linear association between PICU size and number of patients declared brain dead per year, with an increase of 4.27 patients (95% CI, 3.46-5.08) per 1000-patient increase in discharges (P < .001). The median (interquartile range) of patients declared brain dead per year ranged from 1 (0-3) in smaller PICUs (defined as those with <500 discharges per year) to 10 (7-15) for larger PICUs (those with 2000-4000 discharges per year). The most common causative mechanisms of brain death were hypoxic-ischemic injury owing to cardiac arrest (1672 of 3170 [52.7%]), shock and/or respiratory arrest without cardiac arrest (399 of 3170 [12.6%]), and traumatic brain injury (634 of 3170 [20.0%]). Most patients declared brain dead (681 of 807 [84.4%]) did not have preexisting neurological dysfunction. Patients who were organ donors (1568 of 3144 [49.9%]) remained in the PICU longer after declaration of brain death compared with those who were not donors (median [interquartile range], 29 [6-41] hours vs 4 [1-8] hours; P < .001).

Conclusions and Relevance  Brain death occurred in one-fifth of PICU deaths. Most children declared brain dead had no preexisting neurological dysfunction and had an acute hypoxic-ischemic or traumatic brain injury. Brain death determinations are infrequent, even in large PICUs, emphasizing the importance of ongoing education for medical professionals and standardization of protocols to ensure diagnostic accuracy and consistency.

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