Cause of Death of Infants and Children in the Intensive Care Unit: Parents' Recall vs Chart Review

More than 55 000 children die annually in the United States, most in neonatal and pediatric intensive care units. Because of the stress and emotional turmoil of the deaths, the children's parents have difficulty comprehending information. To compare parents' reports and hospital chart data on cause of death and examine agreement on cause of death according to parents' sex, race, participation in end-of-life decisions, and discussion with physicians; deceased child's age; unit of care (neonatal or pediatric); and hospital and intensive care unit lengths of stay. A descriptive, correlational design was used with a structured interview of parents 1 month after the death and review of hospital chart data. Parents whose children died in intensive care were recruited from 4 South Florida hospitals and from Florida Department of Health death records. Among 230 parents, 54% of mothers and 40% of fathers agreed with the chart cause of death. Agreement did not differ significantly for mothers or fathers by race/ethnicity, participation in end-of-life decisions, discussions with physicians, or mean length of hospital stay. Agreement was better for mothers when the stay in the intensive care unit was the shortest. Fathers' agreement with chart data was best when the deceased was an infant and death was in the pediatric intensive care unit. Death of a child is a time of high stress when parents' concentration, hearing, and information processing are diminished. Many parents have misconceptions about the cause of the death 1 month after the death.