Related Experiment Video
Updated: Jun 21, 2026
Setup and Execution of the Rapid Cycle Deliberate Practice Death Notification Curriculum
Published on: August 5, 2020
A paediatric palliative care programme in development: trends in referral and location of death
C M Vadeboncoeur1, W M Splinter, M Rattray
1Children's Hospital of Eastern Ontario, Ottawa, Canada. vadeboncoeur@cheo.on.ca
Insights
Paediatric palliative care referrals increased significantly, with most children receiving care in hospital, at home, or in hospice. This highlights a growing need for comprehensive end-of-life support for children and their families.
Area of Science:
- Pediatric Palliative Care
- Oncology
- Neurology
- Genetics
Background:
- Paediatric palliative care programs are essential for providing comprehensive support to children with life-limiting illnesses.
- Continuity of care across hospital, home, and hospice settings is crucial for these patients and their families.
Purpose of the Study:
- To describe the formation and growth of a paediatric palliative care programme.
- To analyze referral patterns, diagnoses, and outcomes for children receiving palliative care.
Main Methods:
- Descriptive analysis of patient data from 1999 to 2007.
- Inclusion of referral source, diagnosis, and discharge reasons.
- Data collected from the Palliative Care Team at the Children's Hospital of Eastern Ontario.
Main Results:
- 341 children were referred, with diverse diagnoses including neurological conditions, genetic disorders, cancer, and metabolic diseases.
- Referral rates increased over time, with most children dying in hospital, but a significant proportion at home or in hospice.
- Outcomes included death (55%), discharge due to improvement (7%), transfer (4%), or ongoing follow-up (90 children).
Conclusions:
- Referrals to paediatric palliative care teams have increased across all diagnostic categories and referral sources.
- While most children died in hospital, a notable number received end-of-life care at home or in hospice, indicating family preference and programme success.
- The findings underscore the growing demand and importance of accessible paediatric palliative care services.
Purpose:
To describe the formation of a paediatric palliative care programme 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:
341 children were referred. 24% 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 paediatricians, neonatologists, oncologists and intensivists. 55% of the children have died. 58% of these died in hospital, 27% at home and 15% in hospice. Of the remaining 152 children, 7% were discharged from the programme after clinical improvement, 4% were moved to another geographic location or an adult centre, 2% were not eligible, 1% declined services and 4% were lost to follow-up. The remaining 90 children continue to be followed-up. In the hospitalised patients who died, the annual referral rate increased from 20% to >50%.
Implications:
Referral to the palliative care team has increased over time in all diagnostic categories and from all sources. Most children died in hospital; however, a significant number of families chose end-of-life care at home or in a hospice.
Related Concept Videos
01:25Continuing Care
01:30Specialized Care Centers and Settings-II
Rural health centers are specialized care facilities in remote locations with very few medical personnel. The primary care providers who run the centers are mostly Registered Nurse Practitioners. Here, emergency treatment is provided to critically ill or injured patients before they are transferred to the closest hospital. Fortunately, due to advancement in technology, many rural healthcare facilities and professionals have easy access to diagnostic and treatment...
01:21Tertiary Healthcare System
01:30Specialized Care Centers and Settings-I
Daycare centers
They provide several functions. Some facilities care for healthy newborns and children whose parents work, while others are medically focused and care for...
01:27Ethical Issues
Ethical Concerns in Healthcare:
01:30Ethical Dilemmas II