National Children’s Hospice Palliative Care Day 

Through Short Lives Can’t Wait, CHPCA and Canada’s Pediatric Palliative Care Alliance calls on policymakers, health systems, workplaces, educators, community organizations, and individuals to close the gap between the care children with serious illnesses and their families receive today and the high-quality care they need.  Together, we can create a future where every child with a serious illness and their family can access high-quality, family-centered palliative care in the location of their choice, because short lives can’t wait. 

Canadian research shows that only 18% of children who died and could have benefited from specialized pediatric palliative care actually received it. Among those children who did access palliative care, one in four only received care for fewer than eight days before they died. 

Equitable Access to Care 

Children and families should have access to high-quality hospice palliative care regardless of where they live.  

We are advocating for: 

• Increased access to pediatric hospice palliative care services in all communities, including rural, remote, and equity-deserving communities. Better integration of hospice palliative care throughout a child’s illness, from diagnosis through to end-of-life care and bereavement; transition to adult care; or resolution of a serious.  
• Sustainable funding and coordinated system planning that recognizes children’s hospice palliative care as an essential component of Canada’s healthcare system. 

Despite this need, access to specialized pediatric palliative care remains limited. As of November 2023, only 17 specialized pediatric palliative care (PPC) programs were identified across Canada. These programs are concentrated in urban, population dense areas, leaving families living in rural and remote areas with limited access to specialized care. In addition, no dedicated PPC programs were identified in = the territories, and only one PPC program, located in Halifax, serves all of Atlantic Canada. 

Building a Future Where Every Child Receives the Care They Deserve 

While children’s hospice palliative care providers deliver extraordinary care every day, too many families continue to experience a gap between the care they receive and the standard of care every child deserves.  

We are advocating for: 

• National leadership and collaboration to strengthen children’s hospice palliative care across Canada. 
• Improved data collection and research to better understand children’s needs and improve care and services. 
• Continued investment in programs, education, and supports that ensure children and families receive the right care at the right time. 

Research also points to geographic and socioeconomic disparities in access to pediatric palliative care, with children and families who identify within equity-deserving communities  and those living in rural and remote areas less likely to receive PPC services.

Support for Families and Caregivers 

When a child is living with a serious illness, the impact is felt by the entire family. Parents, siblings, and caregivers often face significant emotional, financial, and practical challenges while providing complex care.

We are advocating for: 

• Greater recognition of, and support for, family caregivers as essential partners in care. 
• Increased access to respite services, practical supports, and caregiver resources. 
• Policies and programs that address the emotional, financial, and social impacts of caregiving. 

Grief and Bereavement Support 

The loss of a child has a lasting impact, yet many families struggle to access the grief and bereavement supports they need.  

We are advocating for: 

• Early integration of grief and bereavement support throughout a child’s illness and the family’s caregiving and bereavement journey. 
• Accessible, culturally appropriate, and long-term grief and bereavement supports for parents, siblings, and families. 
• Greater recognition of childhood loss and bereavement as a priority for health systems and communities.