Pediatric patients receiving palliative care in Canada: results of a multicenter review.

OBJECTIVES To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN Retrospective review of medical records combined with a survey of each program. SETTING Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE Pediatric palliative care program. RESULTS Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.