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Review of a home-based palliative care program for children with malignant and non-malignant diseases
E A Kopecky1, S Jacobson, P Joshi
1Department of Paediatrics, Hospital for Sick Children, Faculty of Pharmacy, University of Toronto, Ontario, Canada.
Insights
Home-based palliative care programs effectively support children with terminal illnesses, enabling them to spend 80% of their time at home. This approach facilitated pain and symptom management, with over half of patients dying at home.
Area of Science:
- Pediatric Palliative Care
- Home Healthcare Services
- End-of-Life Care
Background:
- Home-based palliative care programs offer an alternative to traditional hospital settings for children with life-limiting conditions.
- The Hospital for Sick Children in Toronto established a home-based palliative care program to support pediatric patients and their families.
Purpose of the Study:
- To evaluate the patient characteristics and utilization of a home-based palliative care program for children with diverse life-limiting illnesses.
- To assess the effectiveness of home-based palliative care in terms of time spent at home, symptom management, and place of death.
Main Methods:
- Retrospective chart review of 126 children admitted to the home-based palliative care program between 1986 and 1994.
- Analysis of patient demographics, referral sources, duration of care, parent-team contact frequency, and place of death.
- Review of medication administration, specifically analgesics and opioids, for pain and symptom management.
Main Results:
- Children spent an average of 98.4 days at home, constituting 80% of their remaining time.
- Over half (53%) of the children in the program died at home, with others dying in community or tertiary care facilities.
- Analgesic medications were administered to 54% of patients, with 56% of those requiring opioid analgesia for symptom control.
Conclusions:
- Home-based palliative care is an effective model for managing children with a wide range of terminal illnesses.
- Adequate support systems for both the child and family are crucial for the successful implementation of home-based palliative care.
- The program demonstrated a significant ability to facilitate care and symptom management in the home environment, improving quality of life during end-of-life.
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.