QUEEN’S PARK – MPP Sandy Shaw (Hamilton West–Ancaster–Dundas) will re-introduce her private member’s bill, the Nancy Rose Act, which would create a pediatric palliative strategy in Ontario. The bill is named for Shaw’s younger sister, Nancy Rose, who passed away from leukemia as a child.
“Access to pediatric palliative care would have made my sister’s final moments more comfortable and given my family a real chance to say goodbye,” said Shaw. “No family should have to suffer the added anguish of being unable to access palliative care for their child during the most difficult time in their lives, but in Ontario this is an unfortunate reality.”
Currently, there are only three pediatric palliative care homes in Ontario, located in Toronto, Milton and Ottawa. A 2012 Canadian study found that an estimated 81 per cent of children who could benefit from paediatric palliative care services were not receiving them.
Shaw’s bill passed second reading in 2019, but the Ford government refused to bring it forward for third reading for two years and then prorogued the legislature, scrapping the bill and all its progress.
“Families should not have to endure this gap in our palliative care system any longer. What families are going through is unimaginable. The delays must end and Ford must move this bill forward so that all children in our province have access to the care and comfort they deserve,” said Shaw.
The bill requires the province to develop a paediatric hospice palliative strategy, led by a panel of health experts and families, in order to ensure equitable access to care.
Danielle Zucchet, Family Representative, Provincial Paediatric Palliative Care Steering Committee
“Although there are only small numbers of children who need palliative or end of life care each year in Ontario, the impact of caring for a dying child has an inordinate, long-term effect on their families. Throughout the pandemic it has only become more glaring how isolated families with seriously ill children are. Families are struggling and they are struggling alone, often unable to access even the most basic services. MPP Shaw’s bill proposes to address this inequity by requiring the province to develop a paediatric hospice palliative strategy in order to ensure equitable access to care."
Dave Lysecki MD, McMaster Children's Hospital
“Supports for these families are needed urgently. Access to palliative care is a human right, and yet many Ontarian children and their families cannot access the care they deserve. This starts with leadership recognizing the insufficiency of current resources in many areas of the province and taking meaningful steps toward change. Hamilton and its surrounding region, like many other regions in Ontario, needs a comprehensive paediatric hospice palliative care strategy and resources to begin to start to provide children and their families with the care they desperately need and deserve to receive.”