Palliative and hospice care needed for children with life-threatening conditions.

Abstract

WHEN CHILDREN IN THE UNITED States are stricken with a serious illness or injury, few question the medical community’s focus on aggressive intervention aimed at curing or extending young lives. But what is all too often overlooked, say experts, is that children who die—along with many others who ultimately triumph over life-threatening conditions— often suffer needlessly because of lack of palliative and hospice care. Such care not only addresses the physical needs of the child, such as managing pain and other symptoms, but also brings together a team of physicians, nurses, social workers, therapists, clergy, volunteers, and others to provide psychological, social, and spiritual support for children and their families. Although pediatric palliative care is more generally accepted in some industrialized countries, seriously ill children in the United States often are not offered this kind of help. The United Kingdom, Australia, and Canada have done a better job in providing such services, says Marcia Levetown, MD, of the University of Texas Medical Branch, Galveston. But there are encouraging signs that the issue is gaining new prominence in the United States. A few months ago, the American Academy of Pediatrics (AAP) issued care guidelines for children with lifethreatening and terminal conditions (Pediatrics. 2000;106:351-357) that include a number of recommendations to help make palliative care and respite programs more widely available to children and families who need them. And earlier this year, for the first time, Congress allocated $1 million to develop children’s hospice care demonstration programs in Florida, Kentucky, New York, Utah, and Virginia.