Need for Pediatric Data: CNPCC response on CIHI Report on Access to Palliative Care in Canada

Pediatric Committeee Need for Pediatric Data: CNPCC response on CIHI Report on Access to Palliative Care in Canada June 2023 The Canadian Network of Palliative Care for Children (CNPPC) is a network of Canadians who provide or are interested in Palliative Care for children and is a Special Interest Group of the Canadian Hospice Palliative Care Association. [...] CNPCC is committed to the development of national standards, outcome measures and quality indicators to shape palliative care policy for children in Canada and welcomes the ongoing work of the Canadian Institute for Health Information (CIHI) in furthering this goal. [...] The Canadian Network of Palliative Care for Children applauds the work that has been done but would like to draw attention to the fact that the data for this report is collected on Canadians aged 18 and older, thus there is no information about the current state of palliative care for children in Canada. [...] The CIHI report provides both the objective data and the caregiver perspective on the spotlight issues, including whether death occurs at home or in the community, the role of hospice care in palliative and end-of-life care, who is receiving palliative care, and who isn’t receiving palliative care. [...] For infants, children and youth and their families, for the people who care for them and for those who are moving to the adult care environment, moving forward needs to include a capacity to collect data about Canadians under the age of 18, collecting data specific to all the categories outlined in the CIHI report.