Purpose: To describe the formation of a pediatric palliative care program providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire.
Study design: Descriptive analysis was performed on referral source, diagnosis and reason for discharge for patients referred to the Palliative Care Team at the Children’s Hospital of Eastern Ontario in Ottawa, Ontario, Canada from 1999 to 2007.
Results: Three hundred forty-one children were referred. Twenty-four percent had a neurological condition, 21% had genetic disorders or congenital anomalies, 20% had cancer, 18% had metabolic or neurodegenerative conditions and 17% had another diagnosis. The major sources of referral included Pediatricians, Neonatologists, Oncologists and Intensivists. Fifty-five percent of the children have died. Fifty-eight percent of these died in hospital, 27% at home and 15% in hospice. Of the remaining 152 children, 7% were discharged from the program after clinical improvement, 4% moved to another geographic location or an adult center, 2% were not eligible, 1% declined services and 4% were lost to follow-up. The remaining 90 children continue to be followed. Of hospitalized patients who died, the annual referral rate increased from 20% to over 50%.
Implications: Referral to our palliative care team has increased over time in all diagnostic categories and from all sources. The majority of children died in hospital, however a significant number of families chose end-of-life care at home or in a hospice.