ties. For children with complex chronic conditions, the proportion of deaths occurring at home has been growing but is still smaller than for adults with such conditions. For both groups, most will receive inpatient care during advanced stages or exacerbations of their illness.
Because so many children die in the hospital and because inpatient curative and life-prolonging treatments so often continue for children until death is imminent, the availability and quality of inpatient palliative, end-of-life, and bereavement care are important for these children and their families. Even though increased availability and acceptance of pediatric home hospice programs may reduce the amount of hospital care provided to children with complex chronic conditions that end in death, inpatient care at the end of life is likely to remain more important for children than for adults.
Inpatient care may increase a parent’s sense of security and relieve the family of complex care responsibilities, but it usually affords less privacy, intimacy, and family access and control than does home care (Chaffee, 2001). Whether a hospital specializes in pediatric care may affect these and many other dimensions of care for children with life-threatening medical conditions.
We were shipped back to our local stupid hospital for the last blood transfusions. The staff was used to broken bones and healable stuff. They hadn’t a clue about cancer and the finality of Eric’s situation.
Becky Wooten, parent, 2001
Given the limited number and geographic distribution of specialized pediatric emergency and inpatient services, many children with life-threatening medical problems and their families must depend on general hospitals for care. In addition, children and families served by children’s hospitals distant from their home community must often rely, at some point, on a local general hospital for follow-up or crisis care, and some children will die there. This makes the quality of pediatric palliative services an issue not just for children’s hospitals but for any hospital that cares for children.
The pediatric services of general hospitals vary considerably, ranging from minimal in small rural and community hospitals to intensive and sophisticated in large medical centers. Clinical services provided by pediatric units in these latter centers may differ little if at all from those provided