title: Characterization of Death in Neonatal Encephalopathy in the Hypothermia Era.
abstract: This study aimed to characterize the circumstances of death in encephalopathic neonates treated with therapeutic hypothermia. Patients who died after or during treatment with therapeutic hypothermia between 2007-2014 were identified. Patient circumstance of death was characterized using an established paradigm. Thirty-one of 229 patients died (14%) at a median of 3 days of life. Most who died were severely encephalopathic on examination (90%) and had severely abnormal electroencephalographic (EEG) findings (87%). All those who had magnetic resonance images (n = 13) had evidence of moderate-severe brain injury; 6 had near-total brain injury. Cooling was discontinued prematurely in 61% of patients. Most patients (90%) were physiologically stable at the time of death; 81% died following elective extubation for quality of life considerations. Three patients (10%) died following withholding or removal of artificial hydration and nutrition. Characterization of death in additional cohorts is needed to identify differences in decision making practices over time and between centers.
authors.affiliation: 1 Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.|2 Department of Neurology, Johns Hopkins Hospital, Baltimore, MD, USA.
authors.forename: Monica E
authors.initials: ME
authors.lastname: Lemmon
authors.affiliation: 3 Division of Neonatology, Department of Pediatrics, Johns Hopkins Hospital, Baltimore, MD, USA.|4 Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA.
authors.forename: Renee D
authors.initials: RD
authors.lastname: Boss
authors.affiliation: 5 Department of Pediatrics, Stanford University, Palo Alto, CA, USA.
authors.forename: Sonia L
authors.initials: SL
authors.lastname: Bonifacio
authors.affiliation: 6 Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.|7 Department of Neurology, University of California, San Francisco, San Francisco, CA, USA.
authors.forename: Audrey
authors.initials: A
authors.lastname: Foster-Barber
authors.affiliation: 6 Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.|7 Department of Neurology, University of California, San Francisco, San Francisco, CA, USA.|8 Department of Radiology and Biomedical Imaging, University of California, San Francisco, San Francisco, CA, USA.
authors.forename: A James
authors.initials: AJ
authors.lastname: Barkovich
authors.affiliation: 6 Department of Pediatrics, University of California, San Francisco, San Francisco, CA, USA.|7 Department of Neurology, University of California, San Francisco, San Francisco, CA, USA.|9 Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, CA, USA.
authors.forename: Hannah C
authors.initials: HC
authors.lastname: Glass
mesh_terms: D000293:Adolescent; D000328:Adult; D001921:Brain / Q000000981:diagnostic imaging / Q000503:physiopathology; D001927:Brain Diseases / Q000000981:diagnostic imaging / Q000401:mortality* / Q000503:physiopathology / Q000628:therapy*; D004569:Electroencephalography; D005260:Female; D017051:Hospice Care; D006801:Humans; D007036:Hypothermia, Induced; D007223:Infant; D007363:Intensive Care Units, Neonatal; D008279:Magnetic Resonance Imaging; D008297:Male; D011446:Prospective Studies; D017211:Treatment Failure; D055815:Young Adult
keywords: death; decision making; hypoxic-ischemic encephalopathy; neonatal encephalopathy; therapeutic hypothermia