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.