Specialist paediatric palliative care program development in the standard-of-care era

Area of Science:

• Pediatric Palliative Care
• Healthcare Services Research
• Child Health

Background:

• The prevalence of serious childhood illness in Canada is increasing.
• Access to specialized pediatric palliative care services is crucial but often limited.
• Existing programs are frequently under-resourced, necessitating data for planning.

Purpose of the Study:

• To evaluate the initial experience and demand for a new specialist pediatric palliative care program.
• To provide data for health services planning and resource allocation in Canada.
• To assess the program's capacity to meet the growing needs of seriously ill children.

Main Methods:

• Prospective database study of referred patients from 2015 to 2023.
• Inclusion of prenatal referrals starting in 2021.
• Data collection at referral, consult, and discharge/death/end of pregnancy; Kaplan-Meier survival analysis.

Main Results:

• The program received 650 pediatric and 55 prenatal referrals.
• Annual patient care volume quadrupled over the study period.
• 227 children died, with 99% receiving goal-concordant end-of-life care, increasingly at home.

Conclusions:

• The new pediatric palliative care program experienced demand comparable to established services.
• Findings align with increased prevalence of serious pediatric illness and evolving care standards.
• Results support advocacy for enhanced pediatric palliative care infrastructure in Canada.