Help Shape the Future of Pediatric Palliative Care in Canada

Pediatric palliative care in Canada stands at a critical juncture. While advances in medical technology have improved survival rates for children with life-limiting conditions, significant gaps remain in ensuring these young patients and their families receive comprehensive, compassionate care.

Advocacy efforts are essential to transform the landscape and create a system that truly serves Canada’s most vulnerable children.

The current state of pediatric palliative care

Contrary to common belief, palliative care isn’t reserved for the final stages of life. Both adult and pediatric palliative care work best when introduced at the time of diagnosis of a life-limiting illness.

Life-limiting illnesses significantly impact quality of life but don’t always shorten lifespan—though many may be terminal or incurable. Early integration of palliative care helps manage symptoms, provides emotional support, and improves overall well-being throughout the illness journey, not just at its end.

Across Canada, many children live with life-limiting conditions, yet access to specialized pediatric palliative care is still inconsistent from one province or territory to another. While adult palliative care has gained broader recognition and funding, pediatric services often struggle with limited resources and fragmented delivery models.

Canadian research shows that only 18% of children who could benefit from palliative care actually receive it. This stark reality reflects systemic barriers including insufficient funding, workforce shortages, and geographic disparities that leave rural and remote communities particularly underserved.

National advocacy priorities

Sustainable funding models

Current funding mechanisms for pediatric palliative care are often project-based or dependent on charitable donations, creating instability for programs and families alike. Advocates must push for dedicated, sustainable funding streams that recognize the unique needs of children and their families.

Provincial health ministries need to understand that pediatric palliative care extends beyond medical treatment. It encompasses psychological support, sibling care, educational continuity, and bereavement services that can span years. This comprehensive approach requires investment in multidisciplinary teams and community-based services.

Workforce development

The shortage of trained pediatric palliative care professionals represents one of the most pressing challenges. Advocacy efforts should focus on:

• Expanding training programs in medical schools and nursing programs
• Creating specialized fellowship opportunities
• Developing continuing education requirements for healthcare providers
• Establishing mentorship programs to retain professionals in the field

Studies from the Journal of Hospice and Palliative Care indicate that specialized training increases provider confidence and improves patient outcomes, yet many healthcare professionals report feeling unprepared to care for children with terminal illnesses.

Geographic equity

Children in rural and remote communities face significant barriers to accessing specialized care. Telehealth initiatives show promise, but advocates must ensure these technologies are properly funded and integrated into care delivery models.

Mobile palliative care teams and hub-and-spoke models can extend specialized services to underserved areas. The Alberta Children’s Hospital’s outreach program demonstrates how strategic partnerships between urban centres and rural communities can improve access while maintaining quality care.

The benefits of pediatric palliative care

Enhanced quality of life

Pediatric palliative care significantly improves quality of life for children and their families. Studies demonstrate that children receiving palliative care experience better pain management, reduced anxiety, and improved emotional wellbeing. The multidisciplinary approach addresses not only physical symptoms but also psychological, social, and spiritual needs.

Research published in the Journal of Palliative Medicine shows that children in palliative care programs report higher satisfaction with their care and maintain better relationships with family members and friends. This holistic approach helps children continue participating in activities they enjoy while managing their condition.

Family-centred support

Pediatric palliative care recognizes that a child’s illness affects the entire family unit. Comprehensive programs provide:

• Sibling support services to address the unique challenges faced by healthy siblings
• Parental counselling and respite care to prevent caregiver burnout
• Extended family support to maintain important relationships
• Bereavement services that continue long after a child’s death

Studies indicate that families receiving palliative care support demonstrate better coping mechanisms and experience less complicated grief compared to those without such services.

Improved healthcare outcomes

Early integration of palliative care leads to better overall healthcare outcomes. Children in palliative care programs experience:

• Fewer emergency department visits
• Reduced hospital readmissions
• More appropriate use of intensive care resources
• Better coordination between healthcare providers

A study from SickKids Hospital found that children enrolled in palliative care programs had 30% fewer emergency department visits and spent 25% less time in hospital, while maintaining or improving their quality-of-life measures.

Cost-effective care delivery

Although cost saving should not be the driving factor for children’s healthcare, from a healthcare-system perspective  analysis from the Canadian Institute for Health Information shows that comprehensive palliative care programs cost approximately 40% less than traditional acute care models while delivering superior patient and family satisfaction scores. These savings result from reduced hospital stays, fewer invasive procedures, and more efficient resource allocation.

Educational and developmental benefits

Specialized pediatric palliative care programs help children maintain educational progress and developmental milestones despite their conditions. School liaison services ensure continuity of learning, while child life specialists help children understand their illness in age-appropriate ways.

Children in palliative care programs demonstrate better school attendance rates and academic performance compared to those receiving only traditional medical care. This educational continuity provides normalcy and hope for children and families facing uncertain futures.

How you can help

Contact your elected representatives

Reach out to your municipal councillors, provincial MLAs or MPPs, and federal MPs to discuss pediatric palliative care needs in your community. Share specific examples of service gaps and advocate for increased funding and policy changes. Many representatives are unaware of these issues and welcome constituent input on healthcare priorities.

Learn about pediatric palliative care options and initiatives in your community and prepare talking points, personal stories (with appropriate permissions), and specific policy recommendations. Schedule meetings during constituency weeks when representatives are in their home ridings.

Support advocacy organizations

Join and donate to organizations working to improve pediatric palliative care. Groups like the Canadian Hospice Palliative Care Association, provincial palliative care associations, and children’s hospices rely on public support to fund their advocacy efforts.

Consider monthly giving to provide stable funding for ongoing campaigns. Many organizations offer volunteer opportunities for those who prefer to donate time rather than money.

Raise awareness in your community

Organize or participate in awareness events like #HatsOn4CPC during National Children’s Hospice Palliative Care Day, National Hospice Palliative Care Week or World Hospice and Palliative Care Day. Partner with local healthcare facilities, schools, and community groups to host educational sessions about pediatric palliative care needs.

Use social media platforms to share factual information and personal stories that highlight the importance of pediatric palliative care. Tag local media outlets and elected representatives to expand your reach.

Volunteer your skills

Many pediatric palliative care programs need volunteers with diverse skills. Healthcare professionals can provide direct care or training. Business professionals can assist with strategic planning, fundraising, or administrative tasks. Creative individuals can help with communications, event planning, or recreational  activities.

Contact your local children’s hospital, hospice, or provincial palliative care organization to learn about volunteer opportunities that match your skills and availability.

Support affected families

Families dealing with pediatric palliative care situations often need practical support. Consider organizing meal trains (a meal train is a system where a network of family members or friends band together to schedule, prepare, and deliver meals, transportation assistance, or childcare for siblings). Small gestures like grocery shopping or lawn care can provide significant relief during difficult times.

Respect family privacy and follow their lead on what support they need. Sometimes simply being available to listen provides invaluable comfort.

The path forward

The future of pediatric palliative care in Canada depends on sustained advocacy efforts that address systemic barriers while promoting innovative solutions. Success requires patience, persistence, and strategic thinking that recognizes the complex interplay between healthcare delivery, government policy, and community needs.

Advocates must continue highlighting the unique needs of children and families facing life-limiting conditions while building the evidence base that supports policy change. By working together, healthcare professionals, families, and community organizations can create a system that ensures no child faces a life-limiting illness without access to comprehensive, compassionate care.

The time for action is now. Every child deserves the opportunity to live their fullest possible life, surrounded by support, dignity, and hope. Through coordinated advocacy efforts, we can make significant strides toward making this vision a reality for all Canadian families.