Paediatric palliative care in the home

A palliative home care program for children was reviewed

To obtain a better understanding of the complications found in the home, and to ascertain the extent of the nursing support needed.

The study was descriptive and retrospective. Data were abstracted from both medical and home care charts.

The palliative home care program for children is based in a tertiary care paediatric hospital.

Twenty-eight children under the age of 18 years, with cancer, neurodegenerative disease and acquired immunodeficiency syndrome, needing specialized terminal nursing care at home, were included. Patients needing minimal nursing support were excluded from the review.

Twenty-two patients died at home and two died in the hospital in accordance with the parents' wishes. Most patients had pain severe enough to need opioids (25 of 28). The more frequent complications were inconsistent pain control (43%), vomiting (39%), respiratory problems (39%), bed sores (25%) and convulsions (25%). Home care had to be discontinued for only four patients. Parents found intractable pain, convulsions and end-stage dyspnea were the more worrisome complications. The patients received an average of 14 home visits and 14 telephone calls. Telephone calls and home visits were frequent over the weekends and evenings (0 to 45, median=3).

This report confirms the feasibility of terminal care at home for children with complex problems. Complications can be well tolerated by the parents if the medical team is readily available.