title: Patterns of care at end of life in children with advanced heart disease.
abstract: OBJECTIVE
  To describe patterns of care for pediatric patients with advanced heart disease who experience in-hospital death.
  
  
  METHODS
  Retrospective single-institution medical record review.
  
  
  METHODS
  A tertiary care pediatric hospital.
  
  
  METHODS
  All patients younger than 21 years who died in the inpatient setting between January 1, 2007, and December 31, 2009, with primary cardiac diagnoses or who had ever received a cardiology consult (N=468). After excluding patients with significant noncardiac primary diagnoses, 111 children formed the analytic sample.
  
  
  METHODS
  In-hospital deaths of children with heart disease during a 3-year period.
  
  
  RESULTS
  Median age at death was 4.8 months (age range,1 day to 20.5 years), with 84 deaths (75.7%) occurring before age 1 year. Median length of terminal hospital stay was 22 days (range, 1-199 days). Diagnoses included 84 patients (75.7%) with congenital heart disease, 10 (9.0%)with cardiomyopathy/myocarditis, 9 (8.1%) with pulmonary hypertension, and 8 (7.2%) with heart transplants.Sixty-two patients (55.9%) had received cardio-pulmonary resuscitation during their last hospital admission. At the end of life, 21 children (18.9%) had gastrostomy tubes and 26 (23.4%) had peritoneal drains.Most patients (91.9%) received ventilation, with half also receiving mechanical circulatory support. Eighty-three patients (74.8%) experienced additional end-organ failure. Classified by mode of death, 76 patients (68.5%) had disease-directed support withdrawn, 28 (25.2%) died during resuscitation, and 7 (6.3%) died while receiving comfort care after birth. Eighty-three percent of parents were present at the time of death.
  
  
  CONCLUSIONS
  Infants and children who die of advanced heart disease frequently succumb in the intensive care setting with multisystem organ failure and exposure to highly technical care.
authors.affiliation: Harvard Medical School, Boston, Massachusetts, USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Morell
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.forename: Mark
authors.initials: M
authors.lastname: Scheurer
authors.forename: Ravi
authors.initials: R
authors.lastname: Thiagarajan
authors.forename: Caroline
authors.initials: C
authors.lastname: Morin
authors.forename: Dorothy M
authors.initials: DM
authors.lastname: Beke
authors.forename: Leslie
authors.initials: L
authors.lastname: Smoot
authors.forename: Henry
authors.initials: H
authors.lastname: Cheng
authors.forename: Kimberlee
authors.initials: K
authors.lastname: Gauvreau
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Blume
mesh_terms: D000293:Adolescent; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D005260:Female; D006331:Heart Diseases / Q000401:mortality / Q000628:therapy*; D017052:Hospital Mortality; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D017063:Outcome Assessment, Health Care; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods*; D055815:Young Adult