Facts and Figures About How Children Die in America

Woman holding a child's hand in a hospital bed
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We know more now than ever about how children die in America. Pediatric palliative care and hospice have become more common choices among families of seriously ill children, and the percentage of children dying at home has been steadily rising.

The National Hospice and Palliative Care Organization (NHPCO) released the report "NHPCO Facts and Figures: Pediatric Palliative Care and Hospice Care in America" in 2009 that examined how American children are dying. A review of the facts and figures it provided helps shed light on pediatric deaths in the United States.

How Many Childhood Deaths Occur in America

In 2005 there were 53,552 total childhood deaths in America, which accounted for 2.2 percent of all deaths that year. Slightly more than half of childhood deaths occur in infancy, and babies born to black mothers are twice as likely to die than babies born to white and Hispanic mothers.

Leading Causes of Juvenile Deaths

Causes of death in childhood vary for infants 0-12 months and children 1-19 years old. Accidental deaths are rare in infants but are the leading cause of death in children 1-19 years of age. Let's look at the different causes of death by age group.

The leading causes of death in infants include congenital malformations (19.5 percent), short gestation or low birth weight (16.5 percent), Sudden Infant Death Syndrome (7.4 percent), maternal complications (6.3 percent), complications of placenta, cord or membranes (4 percent), or accidents or unintentional injuries (4 percent).

Accidents top the leading causes of childhood death (1-19 years of age) followed by assault, malignancy (cancer), suicide, congenital malformations, chromosomal anomalies (Down syndrome, etc.), heart disease and cerebrovascular diseases. Slightly more than half of deaths in childhood are classified as accidental (53 percent).

Complex Chronic Conditions in Childhood

Complex chronic conditions (CCC) in childhood may lead the family to seek palliative care or hospice care. The causes of death from chronic conditions differ again for infants versus children 1-19 years of age.

Leading causes of death in infants from CCC include cardiovascular conditions (32 percent), congenital/genetic conditions (26 percent), respiratory conditions (17 percent) and neuromuscular conditions (14 percent).

Leading causes of death in childhood from CCC include malignancy (cancer) (43 percent), neuromuscular conditions (23 percent) and cardiovascular conditions (17 percent).

With advances in medical technology and pediatric specialties, children with complex chronic conditions are living longer. Still, research has estimated that there are 8,600 children who are eligible for hospice care on any given day, yet a relatively small number of patients and families actually use it.

Where Children Are Dying

Despite historical data showing that 70 percent of parents would want a terminally ill or injured child to die at home, most children die in the hospital in the ICU setting. The percentage of children dying at home is increasing over time, and with specialized pediatric hospice care programs increasing, the trend is likely to continue. In 2003, 18.2 percent of children ages 0-19 died at home compared with only 10.1 percent in 1989.

Additional data shows black and Hispanic children are less likely to die at home than white children. It is more common for children in the western part of the country to die at home than children in the northeast part of the country.

Pediatric Hospice Care

Many hospice agencies offer pediatric services, either with a specialty team or with contracted outside help. Over half (56.9 percent) of the hospice agencies that responded to the research request had served 1-10 pediatric patients in the past year. A lower percentage cared for none, and very few cared for more than 10 pediatric patients.

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