Home | Media Coverage | Improving Palliative Care Requires Better Data

Improving Palliative Care Requires Better Data

This article originally appeared in Policy Options on Feb 6, 2024.

If good intentions and funding announcements alone were viable solutions to anything, Canada would be a palliative-care paradise.

More than five years after the federal government adopted its framework on palliative care, progress has been disappointing. For instance, in October 2023, the Canadian Cancer Society warned that Canada is still falling well short of the recommended best practice of at least seven hospice beds per 100,000 people.

However, as critically important as hospice beds are, the country’s palliative-care system requires more: a wholesale, comprehensive national palliative-care policy covering hospices and every other setting of care, including hospitals, assisted-living and long-term care facilities, and home care.

Good policy also requires good data.

Currently, Canadian data has well-known limitations that muddy our picture of the state of palliative care.

However, a new research project from Pallium Canada, the Canadian Atlas of Palliative Care – Ontario Edition, is underway to map the landscape and support much-needed evidence-based policymaking on this important topic.

Data limitations

Researchers and institutes readily acknowledge the need for better data on palliative care.

There has been some reporting at the national level through the Canadian Institute for Health Information (CIHI), which released reports in 2018 and 2023. However, those reports have data gaps and lack shared definitions and standards.

The latter severely hampers policymakers’ ability to compare palliative care across jurisdictions.

The CIHI report recognizes this limitation, noting the lack of “consensus on what receiving palliative care means and what services this should include.” Therefore, we cannot use the CIHI reports to assess the quality of care because “being flagged as palliative under this methodology doesn’t guarantee that a patient actually received quality palliative care.”

The Canadian Society of Palliative Care Physicians (CSPCP) released a response to CIHI’s 2023 report, emphasizing the definitional issues that limit the utility of the CIHI data.

It recommended that clear standards and indicators be established “to reflect provision of high-quality palliative care and these standards must be tied to funding through Accreditation Canada.” The report called on governments to assist with this process.

Academics have also linked what they call palliative care’s “patchwork of provision” to a lack of “formal and enforced standards.” Despite the 2018 introduction of the federal framework on palliative care, stakeholders surveyed in a 2022 study reported minimal change in research and data collection.

Data gaps

Except in a small number of jurisdictions, the data provided to the CIHI is from hospitals alone. This means we are missing data on community-level care, including palliative care received in homes, hospices, long-term care facilities and other settings.

As a consequence, in most of the country except three provinces and Yukon, the data does not allow researchers to “follow patients across data sections” as care may transition between home care, acute or subacute hospital wards, long-term care, hospices, etc.

Even in provinces where care trajectories can be traced thanks to community-level data, some home-care data remains missing from certain regions. This seriously impedes our understanding of patients’ experiences in palliative care through a variety of settings.

Additionally, the CIHI’s reporting excludes the pediatric population entirely. The Canadian Network of Palliative Care for Children responded to the 2023 CIHI report, noting the lack of “information about the current state of palliative care for children in Canada” and calling for action in this area.

Given the issues with the CIHI report, the Canadian Society of Palliative Care Physicians does not believe the evidence justifies the conclusion that access to palliative care in Canada is improving: “We just don’t know.”

The society also noted the experience of palliative-care providers has presented “widening gaps in access and quality, which have only been aggravated by post-pandemic strains.”

The Canadian palliative-care atlas

Pallium Canada offers a solution to these issues with the development of its atlas. A national, not-for-profit palliative-care education and resource organization, Pallium has partnered with the University of Navarra in Spain to bring to Canada the atlas methodology, which has been used to map palliative care across other countries and regions.

Results of a pilot study were released in November. The pilot focused on Ontario’s Central East subregion, using the atlas method to highlight areas of strength and innovation in palliative-care services for scale and spread. The pilot also shows how the method can identify gaps and areas with room for improvement to expand access to quality palliative care, where and when it is needed.

The Canadian atlas will include all provinces and territories. Modest investments from governments and civil society can ensure other atlases can provide policymakers at the provincial, territorial and national level with critical data.

Why good data matters

A more detailed, data-driven understanding of the state of palliative care across Canada is needed to support robust evidence-based policymaking. By identifying what is working well and where further investments or attention are needed, comprehensive data can help the country move toward more accessible and better-quality palliative care.

Only then can governments’ good intentions and funding announcements yield real results for Canadians receiving end-of-life care and their families.

  • Rebecca Vachon is Program Director of Health at Cardus and holds a PhD in Public Administration from the University of Ottawa
  • Dr. Leonie Herx is an Alberta-based palliative care physician, Cardus senior fellow, and research associate with Pallium Canada

February 6, 2024

Policy Options logo

A data gap foils the best efforts and intentions to improve palliative care in Canada