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. In 2009, the National Hospice and Palliative Care Organization (NHPCO) released the report "NHPCO Facts and Figures: Pediatric Palliative Care and Hospice Care in America" by Sarah Friebert, MD that looked at how American children are dying.
Childhood Death in America
In 2005 there were 53,552 total childhood deaths in America, which accounted for 2.2% of all deaths that year. Slightly more than half of childhood deaths occur in infancy, and babies born to non-Hispanic black mothers are twice as likely to die than babies born to non-Hispanic white and Hispanic mothers.
Causes of Childhood Death
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.
Leading Causes of Death in Infants
- Congential malformations (19.5%)
- Short gestation or low birth weight (16.5%)
- Sudden Infant Death Syndrome (7.4%)
- Maternal complication (6.3%)
- Complications of placenta, cord, or membranes (4%)
- Accidents or unintentional injuries (4%)
Leading Causes of Childhood Death (1-19 years of age)
- Malignancy (cancer)
- Congenital malformations
- Chromosone anomalies (Down's Syndrome, etc.)
- Heart disease
- Cerebrovascular diseases
Slightly more than half of deaths in childhood are classified as accidental (53%).
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.
Cause of Death in Infants from CCC
- Cardiovascular conditions (32%)
- Congenital/genetic conditions(26%)
- Respiratory conditions(17%)
- Neuromuscular conditions (14%)
Causes of Death in Childhood from CCC
- Malignancy (cancer) (43%)
- Neuromuscular conditions (23%)
- Cardiovascular conditions (17%)
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% 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% of children ages 0-19 died at home compared with only 10.1% in 1989.
Additional data shows black and Hispanic children are less likely to die at home than white, non-Hispanic 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%) 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.
Source: Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2009.