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Aug 2012

Patterns of Care at End of Life in Children With Advanced Heart Disease

Author Affiliations

Author Affiliations: Harvard Medical School, Boston, Massachusetts (Ms Morell); Division of Palliative Care Medicine, Dana Farber Cancer Institute, Boston (Dr Wolfe); Department of Cardiology, Children's Hospital Boston (Drs Scheurer, Thiagarajan, Smoot, Cheng, Gauvreau, and Blume and Mss Morin and Beke); and Division of Cardiology, Department of Pediatrics, Medical University of South Carolina, Charleston (Dr Scheurer).

Arch Pediatr Adolesc Med. 2012;166(8):745-748. doi:10.1001/archpediatrics.2011.1829

Objective To describe patterns of care for pediatric patients with advanced heart disease who experience in-hospital death.

Design Retrospective single-institution medical record review.

Setting A tertiary care pediatric hospital.

Participants 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.

Main Outcome Measure 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 cardiopulmonary 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 Classified by mode of death, 76 patients (68.5%) had disease-directed support withdrawn, 28 (25.2%) died during resuscitation, and 7 (6.3%) died while receiving comfort care after birth.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.

Conclusion 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.