Review of a Home-Based Palliative Care Program for Children with Malignant and Non-Malignant Diseases

Abstract

This retrospective chart review presents the patient characteristics and utilization of the home-based palliative care program at The Hospital for Sick Children in Toronto. A total of 126 children dying from a broad spectrum of diseases was admitted during the period 1986–1994, referred from neurosurgery, genetic/metabolic, neurology, neonatology, nephrology, cardiology, general pediatrics, general surgery, and pulmonology. At the time of review, 15 patients remained alive and 18 had been discharged from the program. Mean age at the time of referral was 4.8 ± 0.51 years and mean age at death was 5.3 ± 0.55 years. The mean number of days in hospital was 26.5 ± 14.6 while days spent at home averaged 98.4 ± 15.2; thus 80% of the children's remaining time was spent at home. The average number of parent-team contacts was 3.5 ± 0.9 by pager and 24.0 ± 2.9 by telephone. Of the 93 patients who died in the program, 53% died at home, 18% died in community hospitals, and 29% died in a tertiary care facility. Analgesic medications were administered to 54% of the patients; 56% of these then required opioid analgesia for pain and symptom management. Home-based palliative care appeared to be an effective program for many children with a variety of terminal illnesses after adequate supports for the child and family had been established.