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Palliative care services for children with chronic illnesses need to be at least partially hospital-based

A study of 60 children's hospitals located throughout the United States reveals that children with complex chronic conditions (CCCs) such as cancer, congenital heart disease, or cystic fibrosis, are in the hospital longer and spend longer periods on mechanical ventilation before dying in the hospital than other children. This finding suggests that palliative care services for chronically ill children need to be at least partially hospital-based.

Services for children with CCCs should be integrated with community-based services to cover the inpatient and outpatient components of care as much as possible, and they should facilitate, if the family desires, the occurrence of death at home, suggests Chris Feudtner, M.D., Ph.D., M.P.H., of the University of Washington. This research was supported in part by the Agency for Healthcare Research and Quality (K08 HS00002).

Dr. Feudtner and his colleagues used discharge data from 60 hospitals to identify all deaths of patients 0 to 24 years of age during 1991, 1994, and 1997. They classified discharge diagnoses into nine major categories of CCCs: cardiovascular, neuromuscular, malignancy, respiratory, renal, metabolic, gastrointestinal, hematologic/immunologic, and other congenital/genetic. Patients with CCCs were more likely than non-CCC patients to have been mechanically ventilated (52 vs. 46 percent) and to have been ventilated longer (mean of 12 vs. 5 days).

After adjustment for age, sex, year, and principal payer, patients with one or more CCCs had 40 to 50 percent less chance of dying soon after hospital admission than patients with no CCC diagnosis. Perhaps it is more difficult to foresee what is likely to happen to gravely ill children with CCCs than other children, and this uncertainty leads to prolonged courses of intensive therapy before care is limited or withdrawn. On the other hand, children with CCCs who die in the hospital may have had several other nearly fatal episodes. This may prompt family and care providers to more persistently pursue aggressive therapy such as mechanical ventilation for prolonged periods of time in the hope of yet another astonishing recovery, explain the researchers.

See "Characteristics of deaths occurring in children's hospitals: Implications for supportive care services," by Dr. Feudtner, Dimitri A. Christakis, M.D., M.P.H., Frederick J. Zimmerman, Ph.D., and others, in the May 2002 Pediatrics 109(5), pp. 887-893.

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