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Arch Pediatr Adolesc Med. 2012 Aug;166(8):745-8.

Patterns of care at end of life in children with advanced heart disease.

Author information

1
Harvard Medical School, Boston, Massachusetts, USA.

Abstract

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 Classified by mode of death, 76 patients (68.5%) had disease-directed support withdrawn, 28 (25.2%) died during resuscitation, and 7 (6.3%) died while receiving comfort care after birth.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

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.

Comment in

PMID:
22473887
PMCID:
PMC4119813
[Indexed for MEDLINE]
Free PMC Article

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