• The death of a child has a devastating and enduring impact.

  • Too often, children with fatal or potentially fatal conditions and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs.

  • Better care is possible now, but current methods of organizing and financing palliative, end-of-life, and bereavement care complicate the provision and coordination of services to help children and families and sometimes require families to choose between curative or life-prolonging care and palliative services, in particular, hospice care.

  • Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care, and design supportive public policies.

  • Integrating effective palliative care from the time a child’s life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die—and will help the families of all these children.

The report recognizes that while much can be done now to support children and families, much more needs to be learned. The analysis and recommendations reflect current knowledge and judgments, but new research and insights will undoubtedly suggest modifications and shifts in emphasis in future years.

CONTEXT AND CHALLENGES

In the United States and other developed countries, many infants who once would have died from prematurity, complications of childbirth, and congenital anomalies (birth defects) now survive. Likewise, children who previously would have perished from an array of childhood infections today live healthy and long lives, thanks to sanitation improvements, vaccines, and antibiotics. In the space of a century, the proportion of all deaths in the United States occurring in children under age 5 dropped from 30 percent in 1900 to just 1.4 percent in 1999. Infant mortality dropped from approximately 100 deaths per 1,000 live births in 1915 to 7.1 per 1,000 in 1999. Nonetheless, children still die. Approximately 55,000 children ages 0 to 19 died in 1999.

Patterns of child mortality differ considerably from patterns for adults, especially elderly adults who die primarily from chronic conditions such as heart disease and cancer. Palliative, end-of-life, and bereavement care must take these differences into account. As shown in Figure S.1, about half of all child deaths occur during infancy. Most of these deaths occur soon after birth from congenital abnormalities or complications associated with pre-



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement