The Framework on Palliative Care in Canada—Five Years Later: A Report on the State of Palliative Care in Canada
Organization: Health Canada
Table of contents
- 1. Minister's message
- 2. Introduction
- 3. Supporting palliative care
- 4. Reporting on progress toward the Framework's vision
- 5. Next steps
- Appendix A: Blueprint for the Framework
- Appendix B: Provincial and territorial efforts across Canada
1. Minister's message
In Canada, given the choice, most people with serious illness prefer to spend the end of their lives at home or in a home-like setting in their community. Many Canadians find it difficult to plan for that time and to discuss serious illness, death, dying and end-of-life care with their loved ones and health care providers. Being proactive and compassionate about these topics is critical to the well-being of people living with serious illness and their families and loved ones.
As Minister of Health, I am pleased to present Health Canada's 2023 Report on the State of Palliative Care in Canada. Since the release of the Framework on Palliative Care in Canada in 2018, there have been collective efforts to advance palliative care awareness, access to training, supports for caregivers and providers, and to stimulate research and improve data collection on palliative care. And I am especially encouraged to report that, since 2018, we have moved closer to our collective vision for palliative care in Canada. This progress is the result of collective and collaborative efforts by governments, organizations and individuals over the last five years.
More Canadians are engaging in Advance Care Planning, sharing their wishes for their future care with their care teams and those closest to them. More Canadians are receiving palliative care at home compared with five years ago. When a person cannot be at home, they have more access to hospices than they did five years ago. More health care providers, at all levels, are trained in palliative care and how to have those difficult but necessary conversations. There are more resources available for all of us, to help support us as we care for our loved ones at the end of life and find our way through grief related to their loss.
But there is still more work to do. Persistent gaps remain in equitable access to services for some, based on their age, where they live or other factors. In many cases, palliative care is received very late in a person's illness. While research capacity is increasing and data improvements are being made, consistent measurement remains a challenge.
The Government of Canada will continue to use the Framework as a guide for our future, making strategic investments through the remaining years of the Action Plan on Palliative Care, and working with other governments, First Nations, Inuit and Métis Partners, experts and stakeholders, to see its vision through.
Thank you to all who have contributed to the improvements in palliative care. Together, we are moving toward our vision of Canadians having the best possible quality of life right to the end of life.
The Honourable Mark Holland, P.C., M.P.
Minister of Health
2.1. Framework on palliative care
The Government of Canada passed a bill on December 12, 2017 (Parliament of Canada, 2017) providing for the Minister of Health to create a framework on palliative care. The Act states that the Minister must:
- develop a framework that supports improved access to palliative care across Canada;
- consult provinces, territories and palliative care providers to make the framework; and
- report on the state of palliative care in Canada by December 4, 2023.
The Minister of Health tabled the Framework on Palliative Care in Canada in Parliament on December 4, 2018. The Framework was developed through broad consultation as a consensus, strategic policy document. It offers a guideline for all palliative care stakeholders to work toward the shared vision of "all Canadians with serious illness living well until the end of life".
2.2. Progress report
The Framework outlined a shared vision of success to be achieved through changes in palliative care policies and programming. Since the release of the Framework in 2018, more Canadians are accessing palliative care and more care is provided in the community (Canadian Institute for Health Information, 2023a). In its 2023 report, Access to Palliative Care in Canada, the Canadian Institute for Health Information notes that 58% of Canadians who died in 2021–2022 received palliative care. This is an increase from 52% in 2016–2017 (Canadian Institute for Health Information, 2023a).
More people are dying at home with palliative support compared with five years ago. Among those who received some form of palliative care, 61% had palliative care in hospital only, while 36% had palliative home care. In 2021–2022, 13% of Canadians died at home with palliative care—an increase from 7% in 2016–2017. This data reflects improvements in meeting Canadians' wishes to remain at home as long as possible. When people receive palliative home care, they have their needs identified earlier and they may live longer (Canadian Institute for Health Information, 2023a).
When receiving care at home is no longer possible or desired, a hospice setting can provide a home-like environment for palliative care. Since 2018, there has been an increase in the availability of hospice settings for Canadians and their families. According to the Canadian Cancer Society's recent reportFootnote 1 (Canadian Cancer Society, 2023), the number of residential hospice beds is increasing across provinces and territories. In a 2017 survey, there were 88 residential hospices in Canada. As of May 2022, there were 142 sites with 1,530 beds. The majority of these are in Ontario, Quebec and British Columbia (Canadian Cancer Society, 2023).
Provinces and territories are collaborating with a range of partners to expand residential hospice services. For example:
- Yukon's first hospice, Wind River Hospice House (co-located in Whistle Bend Care Home), which is funded and operated by Yukon Government, opened in 2020.
- Saskatchewan's first stand-alone hospice facility opened in Saskatoon in 2021 and a second site opened in 2023 in Prince Albert.
- In New Brunswick, there are three residential hospices located in Fredericton, Moncton and Saint John providing palliative and end-of-life care services in community settings. A fourth residential hospice is set to open in Miramichi by the end of 2023 through an innovative partnership with the province's Extra-Mural Program home health care services.
Despite improvements in the last five years, there are still gaps in care. Some people do not get palliative care until just before they die. Others die in hospital even when community supports, such as home care, may be available. The Canadian Institute for Health Information reports that some people experience greater barriers to accessing palliative care because of their age, where they live, or their diagnosis (Canadian Institute for Health Information, 2023a). Specifically designed palliative care initiatives can address these known barriers to meet the needs of underserved populations.
People who may not have resources and supports or whose "home" may not be safe face additional barriers in accessing palliative care. This includes people who lack adequate shelter or who may not have family or friend care providers. The barriers experienced by those without family or friend care providers underscore the importance of supporting and spreading community-based programs such as compassionate communities.Footnote 2 The compassionate community approach recognizes that it is everyone's responsibility to care for each other. Similarly, achieving the vision of the Framework - that all Canadians with serious illness live well until the end of life - will be possible only through the combined efforts of governments, stakeholders, health care providers, caregivers, and communities.
This progress report takes stock of the landscape of palliative care in Canada and proposes recommendations on next steps for continued action. In the following sections, actions of governments, organizations and the many palliative care stakeholders reflect the collective action taken toward the common goals described in the Framework's Blueprint (Appendix A).
|Highlights of Current Progress
|Actions Moving Forward
|Palliative care training and education
|Measures to support palliative care providers and caregivers
|Research and the collection of data on palliative care
|Measures to facilitate equitable access to palliative care across Canada
3. Supporting palliative care
The federal, provincial and territorial governments share responsibility for health care. The federal government provides financial support to the provinces and territories. The responsibility for administration and delivery of health care services, including palliative care, falls primarily under provincial and territorial jurisdiction.
The Common Statement of Principles on Shared Health Priorities outlines common priorities for action for the federal government and the provinces and territories. This includes improving access to palliative and end-of-life care at home or in hospices.
The Federal Budget 2017 invested $6 billion over ten years in federal funding to support these common priorities. Bilateral agreements between the federal government and provincial and territorial governments (2017-2022) described how the first five years of funding would be used. Once these agreements expired, new one-year agreements (2022-2023) were put in place; together, these agreements deliver on the first six years of the 10-year funding. The remaining four years of funding for home and community care, including palliative care, will be integrated into new Aging with Dignity bilateral agreements (currently being negotiated) as part of the Federal "Working Together to Improve Care for Canadians" plan.
While there is no indicator specific to measuring progress on access to palliative care, the Common Statement of Principles has an indicator on "place of death" in order to better understand the setting in which Canadians are spending their end of life. This indicator showed that, in 2020, 55% of Canadians died at home or in the community (meaning outside of hospitals and acute care facilities). However, this indicator is not broken down to distinguish those who may have received palliative care. Data from the Canadian Institute for Health Information, Statistics Canada and researchers are improving our understanding of palliative care data related to access and quality.
Complementary to the 2017 agreements with provinces and territories, in 2019 Health Canada released a multi-year Action Plan on Palliative Care to tackle issues identified during the Framework's development. Federal investments of $24 million from 2019 to 2021 supported implementation of the Action Plan. Budget 2021 provided an additional $29.8 million over a six-year period (starting in 2021–2022) for Health Canada to continue to implement the Action Plan. This funding extends beyond the timeline of this report, allowing for a longer-term focus on the Framework's collective vision for palliative care.
As of 2023, 12 out of 13 provinces and territories have a published palliative care framework or actions to improve palliative care specific to their jurisdictions (Appendix B).
National, regional and local organizations are also working to improve access to palliative care. Many of these organizations represent people with serious illness, their caregivers, family (or chosen family), friends, and those who provide palliative care or a palliative approach to care.Footnote 3 Some organizations' innovative palliative care initiatives are highlighted throughout the remainder of this report.
4. Reporting on progress toward the Framework's vision
The medium-term goals in the Framework envisioned for palliative care in Canada align with the timeline of this report. They include:
- increased awareness of palliative care, and greater uptake of advance care planning;
- access to training, education, and tools for palliative care providers to allow them to meet the goals of patients and families;
- access to supports for caregivers and providers;
- research undertaken and applied, and improved data collection and reporting to align with policy goals; and
- mechanisms to facilitate consistent, equitable access to palliative care for all who could benefit.
4.1. Palliative care training and education
One goal of the Framework was that all health care providers (regulated or not) would have core skills to provide a palliative approach to care, supported by specialists as needed. Over the last five years, Canada has made progress in improving access to training, education, and tools for palliative care providers. This helps providers to meet the goals of patients and families.
- Health Canada has invested just under $18.5 million in training, resources and supports for providers and caregivers.
- The 12 provinces and territories that participated in a recent survey reported having focused on workforce education in palliative care (Canadian Cancer Society, 2023).
- Half (52%) of respondents to a 2021 survey led by a recent Canada Research Chair in Palliative and End of Life Care (Pesut et al., 2022) felt the availability of health care professionals trained in palliative care had improved since 2016. Respondents cited the importance of shifting to virtual learning, resulting in more effective and timely education.
Project ECHO™ is a five-year national community of practice initiative, funded by Health Canada, to support continuous professional development for health care providers who care for patients with serious illness. Led by Pallium Canada and partners from across Canada, the project builds local capacity to provide palliative care for patients and their families. Since its launch in March 2021, Pallium and its Hub Partners have delivered over 250 learning sessions, with over 13,000 learner encounters and over 15,500 recording views.
In 2021, Health Canada, the Canadian Partnership Against Cancer and other partners developed the Canadian Interdisciplinary Palliative Care Competency Framework. The goal of this Competency Framework was to set a common standard for the knowledge and skills that nurses, physicians, social workers, personal support workers, volunteers, and spiritual care practitioners need in order to provide palliative care. The Competency Framework leveraged existing provincial frameworks to develop a minimum standard of competency across the country. It also includes domains to address care for First Nations, Inuit and Métis Peoples. The Framework will include additional disciplines in the future.
The Canadian Interdisciplinary Palliative Care Competency Framework in action
The following projects are just a few examples of how the use of common competencies are improving care through initiatives supported by a range of governments and partners.
The Canadian Home Care Association is implementing a Health Canada-funded project to help home care organizations enhance the competencies of their frontline providers. This project will help to deliver a compassionate, emotionally responsive approach to care for patients in their homes.
The Yukon Palliative Care Education Flowcharts for Health Care Providers and Caregivers was released in 2022. Embedded within these flowcharts are the Canadian Interdisciplinary Palliative Care Competency Framework's self-assessments for each discipline. These flowcharts help service providers map areas for professional development and then identify educational resources to close those gaps in their knowledge and skills.
Recently, the British Columbia Centre for Palliative Care developed and implemented palliative care education initiatives, guided by both the provincial and Canadian competency frameworks. Their Serious Illness Conversation training is a nationally recognized, evidence-based education and capacity-building program. The program supports health care providers to initiate and conduct conversations with people who are seriously ill and their family members or loved ones. Conversations can focus on people's wishes, fears, goals and priorities for care.
Pallium has developed tools to put the Competency Framework into action. In 2021 alone, 7,982 learners engaged in the "Learning Essential Approaches to Palliative Care" course and Pallium hosted 313 learning sessions. Evaluations of these courses and their impact shows a marked change in the knowledge, attitudes and comfort level of health care workers delivering palliative care.
"I will always think now of whether a person with a life-limiting illness might benefit from a palliative approach to care. I will be a better advocate for them."
The Canadian Society of Palliative Care Physicians is developing modules to help physicians prepare for the Subspecialty in Palliative Medicine examination. This multi-year (2022-2025) Health Canada-funded project with a national scope, will develop 11 new accredited online study modules and update five existing modules. Physicians can use the 16 modules for self-study as part of their requirement to participate in continuing professional development. Non-specialists can also take part in this self-study. This project will help to create a consistent level of palliative care practice across Canada. In its first year, 87% of participants reported enhanced knowledge. Eighty-eight percent had a better understanding and awareness of various medications, treatments, and practices. Eighty-three percent of participants felt more confident in their exam preparation.
4.2. Measures to support palliative care providers and caregivers
Governments and partners who contributed to the development of the Framework imagined a future with better awareness and understanding of palliative care, increased uptake of Advance Care Planning, and better supports for caregivers and providers.
An important first step to access palliative care services is being aware of palliative care and how it can help. Engaging in Advance Care Planning allows people time to reflect on their wishes and values. It also helps other people understand the care they would want in the future if they were unable to speak for themselves.
Since the launch of the Framework, more Canadians are engaging in Advance Care Planning and there is growing recognition that this is helpful for their families. In a recent poll, 93% of Canadians said it was important to talk to family members about their care wishes. Between 2019 and 2021, the number of Canadians who talked to a family member almost doubled: from one in three (36%) to nearly two in three (59%) (Canadian Hospice Palliative Care Association, 2021).
- Since 2018–2019, Health Canada has invested $8.3 million to raise awareness of palliative care for care providers and for caregivers.
Examples of some of the promising awareness initiatives launched since 2022 are outlined in the box below. Building on this existing work and leveraging the expertise and perspectives of multiple stakeholders, in 2022-23, Health Canada launched its multi-year public education campaign. The campaign addresses myths that act as barriers to accessing palliative care. The campaign also aims to increase grief literacy and improved understanding and awareness of a palliative approach to care. The main audiences are the public and non-palliative specialist providers. Health Canada and the Canadian Cancer Society are working together on elements of the campaign to extend its reach and maximize its impact. As part of this work, Health Canada commissioned a public opinion survey in 2022. This survey measured current views on palliative care and grief.
Before the campaign started, 58% of respondents indicated they were somewhat to very familiar with palliative care. Forty-five percent agreed or strongly agreed that they would know where, when, and how to seek help with their grief. Please visit the Understanding Canadians' views on palliative care survey report for more baseline public opinion results on Canadians' views on palliative care and grief.
Health Canada plans to commission a follow-up survey at the end of the campaign in 2026-27. The follow-up survey will signal whether people's understanding of palliative care and grief has improved since 2022. It can also help identify areas where more work will be needed to address knowledge barriers to accessing care.
National efforts to improve palliative care awareness in action
The Canadian Hospice Palliative Care Association works to increase public awareness of palliative care, best practices, and current research. They do this through campaigns, conferences, educational webinars, and knowledge translation initiatives such as National Hospice Palliative Care Week.
The Canadian Cancer Society launched an awareness campaign in January 2023 called About Life. The goal of the campaign was to show what palliative care has given to the people (and their loved ones) who have received it. The intent is to demonstrate why everyone in Canada needs access to palliative care. People nationwide viewed the advertisements and videos more than 10 million times. The Canadian Cancer Society won a Polaris Award (silver medal) for the "Best Campaign Created for a Non-Governmental Organization Dealing with Issues Related to Health".
More than 8 million family and friend caregivers in Canada are providing care in the home to someone who is seriously ill. Sharing their lived experience, patients and caregiver advisors informed the development of the Canadian Institute for Health Information's 2023 report (Canadian Institute for Health Information, 2023a). These patient and caregiver advisors expressed concern about inequitable access to care, lack of information about services and resources, and the pressure to advocate for improvements in palliative care.
Most caregivers will feel unprepared and overwhelmed at some point. About one in three caregivers reports distress (35% in 2018–2019 and 37% in 2021–2022) (Canadian Institute for Health Information, 2023b). A number of programs exist to support caregivers including support to take a period of leave from work, access to online resources (including grief and bereavement supports), and access to volunteer navigation programs.
Employment and Social Development Canada also offers leave and job security for working people who are supporting individuals with serious illness through three types of Employment Insurance benefits:
- Family caregiver benefit for a critically ill or injured child under 18 (up to 35 weeks);
- Family caregiver benefit for critically ill or injured adults (up to 15 weeks); and
- Compassionate care benefits (up to 26 weeks for a person of any age who requires end-of-life care).
- On January 3, 2016, the maximum duration of compassionate care benefits was extended from 6 weeks to 26 weeks.
- In December 2017, Employment and Social Development Canada expanded the definition of "family member" to include people who are "like a family member" for all caregiving benefits. This expanded definition offers more flexible options for those providing care for a loved one.
Spotlight on Compassionate Community initiatives and supports for caregivers
In 2023, more than 223 Compassionate Community initiatives were in place across Canada (Pallium Canada, British Columbia Centre for Palliative Care, and Hospice Palliative Care Ontario, 2023).
The Compassionate Communities movement in British Columbia, supported by the British Columbia Centre for Palliative Care and the British Columbia Compassionate Communities—Framework for Action, includes seed grants to community-based organizations. The movement offers training, toolkits, and coaching. This movement helps to equip staff and volunteers with necessary skills and resources to provide psychosocial, practical, and spiritual support closer to people's homes.
In Alberta, Covenant Health's Palliative Institute launched Compassionate Alberta, to increase the public's awareness of palliative care and advance care planning, to help Albertans have conversations about living and dying well and plan appropriately for the future.
Statistics Canada has partnered with Health Canada and the Canadian Institute for Health Information to add questions about Compassionate Communities to the Canadian Social Survey Cycle 12. These questions will ask respondents about their involvement with their community. It will also ask whether people would be willing to give or receive help in their community if they had a serious illness. Results will be publicly available in spring 2024 and will be used to help develop programs and policies that support the spread of successful compassionate community initiatives across Canada.
For the over 9 million people grieving a COVID-19 related loss (Canadian Grief Alliance, 2023), and the millions more grieving other losses, where they live, time and cost can make accessing support difficult. To enable all Canadians to access the help they need, with support from Health Canada and others, Canadian Virtual Hospice developed a suite of free, online, bilingual grief resources, available 24 hours a day, seven days a week, from the comfort of people's homes.
These resources include:
- MyGrief.ca | MonDeuil.ca (for grieving adults)
- YouthGrief.ca | DeuilDesAdos.ca (for grieving youth)
- KidsGrief.ca | DeuilDesEnfants.ca (for parents, guardians, and educators supporting grieving children)
"I sent a link to the MyGrief.ca modules to my mom. My dad died in the fall, and she has been struggling. She did the anticipatory grief [modules] and was excited that she now realized how she and my dad had been grieving all the losses over the past nine months. It completely opened her eyes to the experience and gave a name for it…. (I) just wanted to say thanks to Canadian Virtual Hospice for the work you do and the fabulous resources you have created. They truly make a difference for people."
Advance care planning and grief support in action
The Canadian Hospice Palliative Care Association spearheads the Advance Care Planning Canada initiative, collaborating widely to provide public education and a library of resources. In 2023, the Canadian Hospice Palliative Care Association began a Health Canada-funded project to make these resources more accessible to people with disabilities.
Nova Scotia's work on Advance Care Planning included implementing a standardized provincial form and process. These actions help to support discussions on Goals of Care between patients (or their substitute decision-maker) and health care providers. To support identification for patients' Goals of Care, Nova Scotia also added electronic flags to patient charts.
The Quebec Palliative Care Action Plan includes a priority on enhancing health care providers' skills to engage in Advance Care Planning conversations, and more public awareness on the importance of Advance Care Planning.
The Public Health Agency of Canada's Dementia Community Investment Program provided funding of almost $700,000 over two years (2020–2021 to 2021–2022) to the British Columbia Centre for Palliative Care to better support people living with dementia. Their work on Advance Care Planning focuses on people in early stages of dementia, those at higher risk for dementia, and their family/friend caregivers.
The Advancing Grief Literacy in Canada: First Steps Action Plan project led by the Canadian Virtual Hospice (on behalf of the Canadian Grief Alliance) launched in fall 2023. Health Canada has invested $1 million in this project, which aims to help those who are grieving:
- better understand their experiences and respond to their grief;
- feel supported by the people in their life; and
- know how to access services.
The project includes a series of accessible online resources, learning opportunities, and a national awareness campaign.
4.3. Research and the collection of data on palliative care
A measure of success of the Framework is a future where stakeholders use innovations and technology to ensure palliative care supports and services are available to those who need them. Consistent data across care settings and providers is important to measure outcomes as well as experiences of people with serious illness and their families.
The Framework identified a need to support data systems and research which provide the evidence base for improvements in palliative care. Over the past five years, there has been significant progress in both the areas of research and data collection.
- Health Canada has invested $3.7 million since 2021 to improve palliative care research and data collection.
- The Canadian Institutes of Health Research invested more than $30 million in palliative care research between 2018-2019 and 2022-2023, mostly through the Institutes of Aging, Cancer Research, and Health Services and Policy Research. In 2022-2023 alone, the Canadian Institutes of Health Research invested approximately $6.8 million in palliative care research, led by 49 researchers, through 60 grants and awards.
Since 2018, the Canadian Institutes of Health Research has supported 215 researchers across 259 palliative care grants and awards. These investments have continued to generate evidence aimed at improving care for people with serious illness. A summary of some promising health care services and patient- and family-oriented research the Canadian Institutes of Health Research has funded are provided below.
Canadian Institutes of Health Research funded research projects
Improving Early Access to Palliative Care: With funding from the Canadian Institutes of Health Research, a team led by Drs. Hsien-Yeang Seow and Ahmed Jakda from McMaster University, and Frederick Burge from Dalhousie University, is evaluating the Community Access to PAlliative Care via Interprofessional Teams Intervention (CAPACITI). This intervention trains primary care teams in the provision of home-based palliative care. Based on previous pilot work, the team is currently assessing the performance of the program on a national scale. The intervention has potential to improve delivery and increase access to home-based palliative care for patients across Canada.
Improving Palliative Care Data: Lakehead University is leading a research collaboration funded by Health Canada, leveraging InterRAIFootnote 4 assessment data. This research will study the experiences of people underserved by palliative care, such as:
- minority language groups;
- adults 85 years and older;
- people living with dementia;
- people living with mental illness;
- people in rural and remote settings; and
- people with intellectual and developmental disabilities.
Lakehead University will use linked, pan-Canadian, population-level, longitudinal data from multiple health care settings. An assessment-based "flag" will be developed to identify those who could benefit from a palliative approach to care. They will create a palliative care assessment tool to promote consistent data collection. Data analyses will improve understanding of needs, experiences, and outcomes.
Supporting New Researchers: Because palliative care is a small field, it can be difficult for researchers to launch a successful career in this area. This career path can be facilitated via networks of researchers. Health Canada is providing $2.9 million (2021/2022 to 2025/2026) to the Pan-Canadian Palliative Care Research Collaborative. This project fosters mentorship and mutual support. There are over 100 researchers and partners engaged in 25 active research programs. The seed funding and other capacity building activities from this collaboration have laid the groundwork for researchers' success. This is reflected in over $5 million of contributions and grant funding from major funders such as the Canadian Institutes of Health Research. Data standardization is one priority area, and the work will help build more consistent ways of measuring improvements in palliative care.
In 2018, the Canadian Institute for Health Information published its baseline report on Access to Palliative Care in Canada (Canadian Institute for Health Information, 2018) and updated the report in 2023 (Canadian Institute for Health Information, 2023a). The good news is that the 2023 data reflects some improvements to home care reporting and overall access to palliative care. However, data are needed to better measure access to care and experiences across settings in all provinces and territories, as well as who was not able to access palliative care. Data leaders such as Statistics Canada and the Canadian Institute for Health Information are collaborating to improve their palliative care datasets. This work will shed light on the diversity of the Canadian population while identifying who has more challenges accessing care, ultimately informing changes in policy and practice.
While Statistics Canada collects and reports on key population indicators such as vital statistics (including numbers and causes of death), it has not previously focused on palliative and end-of-life care. Budget 2021 provided Statistics Canada with $41.3 million over six years, and $7.7 million ongoing, starting in 2021-22, to launch a new initiative called Health Care Access, Experiences, and Related Outcomes, to improve data on supportive care, primary care, and medications across all health care settings. Since Health Canada expressed the need for more data on people's experiences with palliative care, this project will include a one-time open-link survey of people with serious illness or their caregivers who may have accessed palliative care. The invitation to participate will be circulated through websites, social media, and stakeholders' networks in all provinces and territories. In this "open-link" approach, people self-select to participate. Survey results will be available in spring 2025.
4.4. Measures to facilitate equitable access to palliative care across Canada
The Framework envisioned consistent, equitable access to palliative care for all who could benefit from it. Improving equity in access to palliative care is a priority for all palliative care stakeholders. Canada has made improvements over the past five years in this area.
- Provinces and territories are developing a range of strategies for improving access to palliative care for diverse populations, including rural and remote communities, people with illnesses other than cancer, and particular cultural and linguistic communities (Canadian Cancer Society, 2023).
- Health Canada has invested $4.9 million to date to facilitate equitable access to palliative care, including investments for Indigenous communities.
- Three times as many residents who died in long-term care homes in 2021–2022 were reported to have received palliative care in their last year of life compared with 2016–2017 (19% versus 6%) (Canadian Institute for Health Information, 2023a).
However, there is still work to do to meet the needs of diverse populations and to improve access to palliative care. In 2023, the Canadian Institute for Health Information (Canadian Institute for Health Information, 2023a) reported that:
- Patients with cancer continue to have better access to palliative care than those with other conditions;
- People with dementia are among the least likely to access palliative care services, compared with people with cancer (39% versus 77%);
- Canadians aged 85 and older are less likely to receive palliative care than younger people;
- In 2021-2022, only 34% of residents in long-term care who had less than six months to live received palliative care; and
- People experiencing homelessness, new Canadians, and people of colour face additional barriers to accessing palliative care.
Supporting equitable access to palliative care
The Equity in Approaches to Palliative Care collaborative (University of Victoria) developed resources to support communities interested in improving access to palliative care for equity seeking populations. This expertise is informing a federally funded improvement partnership led by Healthcare Excellence Canada working with the Canadian Partnership Against Cancer, called Improving Equity in Access to Palliative Care. Over four years, up to 20 communities will improve palliative care for people experiencing homelessness or who are vulnerably housed.
Paramedics and Palliative Care: Bringing Vital Services to Canadians was a five-year partnership between Healthcare Excellence Canada and Canadian Partnership Against Cancer. Innovative models of care in Alberta, Nova Scotia and Prince Edward Island inspired this initiative. More than 7,500 paramedics received training and supports in six additional provinces, allowing care for people closer to their homes and communities. Of the approximately 7,000 9-1-1 palliative care calls, 53% were able to receive care at home instead of the emergency department. Paramedics improved presenting health complaints 87% of the time. Over 92% of surveyed patients and families were satisfied with the care received by paramedics. The model saves health care costs and provides patients, families and caregivers with better access to palliative care 24 hours a day, seven days a week, in the community.
"To keep people out of emergency and to keep them at home is amazing … this program has been the link that has been a gap in our service."
Canadian research also shows that only 18% of children who died and who might have benefited from specialized pediatric palliative care actually received it. Among those children who did get palliative care, 25% received it for less than eight days before they died (Widger et al., 2016).
Understanding patient characteristics, through projects like the Lakehead University research collaboration, will help to support the development of culturally safe and respectful care models. The remaining years of the Action Plan will continue to focus on these issues with a view to more people having access to palliative care, including children.
Together with First Nations, Inuit and Métis organizations, Health Canada is developing policy frameworks to reflect the distinct end-of-life care needs of First Nations, Inuit and Métis Peoples.Footnote 5 The Frameworks will be informed by Indigenous-led engagement on palliative and end-of-life care, by parallel engagements happening through other government departments, and by existing published resources.Footnote 6
- To date, Health Canada has engaged with 21 First Nations, Inuit and Métis organizations, including representation organizations for non-status/off reserve and urban Indigenous people. Seventeen of these organizations identified palliative care as a priority and are collaborating with Health Canada in this regard.
Other government departments and organizations are also actively working to advance access to palliative care for First Nations, Inuit and Métis communities. Indigenous Services Canada's First Nations and Inuit Home and Community Care program is a co-designed program that provides funding, or directly provides services, for First Nations on reserve and Inuit.
- Budget 2017 provided $8.5 million in ongoing funding for recipients of the First Nations and Inuit Home and Community Care program to deliver palliative and end-of-life care.
The intent of these services is to supplement provincial and territorial services, including primary health care. Some region-specific initiatives have been funded through Budget 2017 funding. These include:
- training front-line providers;
- implementing hospice-like spaces;
- implementing Indigenous Transition Facilitators (discharge planners) to help navigate access to specialized care following being in the hospital; and
- development of an end-of-life care fund.
Ten out of 13 provinces/territories also noted work is underway in improving access to culturally sensitive palliative care for First Nations, Inuit and Métis communities (Canadian Cancer Society, 2023). Appendix B highlights additional work underway.
First Nations, Inuit and Métis leaders, organizations and governments are working to advance First Nations, Inuit and Métis palliative and end-of-life care.
First Nations, Inuit and Métis palliative and end-of-life care
The Six Nations of the Grand River Territory, Ontario, is an innovative palliative care program model based in Indigenous culture and community values. It supports people to die at home if they choose. This program has a Palliative Shared Care Outreach Team that includes a First Nations physician, nurse, and social worker. It includes education and mentorship for health care providers, as well as traditional teachings to support clients and staff. Program outcomes include increased deaths at home compared to deaths in hospital or in hospice (Fruch, Monture, Prince, & Kelley, 2016).
The Centre for Education and Research on Aging and Health at Lakehead University developed the "Palliative Care for Front-line Workers in Indigenous Communities" curriculum in 2009 (Prince, 2022). This curriculum was created given the need for culturally relevant palliative care education in First Nations, Inuit and Métis communities. Lakehead University created this curriculum with Indigenous communities, Elders, Knowledge Carriers and health care providers. The curriculum recognizes the diversity of First Nations, Inuit and Métis communities' experiences, knowledge, and cultural teachings regarding death and dying. It also uses Indigenous wholisticFootnote 7 teaching concepts combined with the palliative approach to care.
Funding from Indigenous Services Canada since 2017 has made it possible to support increased palliative and end-of-life care services in First Nations communities in Quebec. This includes such initiatives as rooms reserved for palliative care in certain care facilities. Despite these advancements, there is more work needed to increase funding, training, equipment and to extend service delivery hours (First Nations of Quebec and Labrador Health and Social Services Commission, 2023).
5. Next steps
This report highlights the progress and momentum made in palliative care over the past five years. All governments and partners working in palliative care in Canada should continue efforts to sustain the gains to date, continue to address gaps, and maintain progress towards achieving the long-term goals envisioned in the Framework (Appendix A). For its part, Health Canada will continue to strategically invest the funding provided by Budget 2021 in support of the priorities outlined in the Action Plan. Collectively, the following recommendations for next steps may help further the work towards our common vision for all Canadians with serious illness to experience the highest attainable quality of life until the end of life.
So that Canadians and caregivers understand and plan for palliative care and develop advance care plans, all governments and partners could:
- Continue to destigmatize palliative care so people can benefit sooner in their illness journey;
- Ensure more equitable access to grief and bereavement supports;
- Sustain efforts to raise awareness and encourage advance care plans;
- Support compassionate communities; and
- Tailor and disseminate patient and caregiver tools and resources to better support individual needs.
Even with efforts to raise awareness and encourage advance care plans, culture shifts take time. Current palliative care and grief awareness campaigns (including Health Canada's six-year campaign) and other educational resources will help more people understand palliative care and how to access it. Ongoing conversation and collaboration with governments and partners will be important in these efforts, especially as it relates to how to best grow the Compassionate Communities movement in Canada.
To ensure all providers have increased capacity to deliver quality care, and caregivers have appropriate supports to perform their roles, all governments and partners could:
- Continue to advance leading practices in education and training, including mentorship and experiences for health provider students, improving cultural competencies and improving communication skills;
- Continue to expand processes and mechanisms to support navigation of available care and resources;
- Continue to increase the use of the Canadian Competency Framework as the national standard for education and employment for all health care providers;
- Work with Indigenous peoples to develop and disseminate cultural competency guidelines;
- Collaborate with organizations to develop and share competency training so that the needs of underserved populations are met; and
- Implement best practice models that integrate palliative care education for interdisciplinary teams.
Ongoing work to support health care provider and caregiver training and add new disciplines to the Competency Framework is underway. Stakeholders are developing a range of projects to implement the Competency Framework to support both education and clinical practice. This will also help position providers to feel better prepared and offer supports to help Canadians with serious illness.
In order that research, data collection, and best practices are implemented to inform and support policy decisions and the provision of palliative care, all governments and partners could:
- Build on current expertise to continue developing capacity in all aspects of palliative care research;
- Build data capacity including implementing standardized person- and family-reported outcomes measures;
- Develop and adopt precise palliative care indicators; and
- Further our understanding of approaches to palliative care in home and long-term care.
Collaborative work between governments and partners should continue to consider efforts to advance collecting and using comparable data to measure improvements in access to and quality of palliative care. Research networks such as the one Health Canada has helped launch are and will continue providing mentorship, collaboration, and economies of scale that build research capacity for the future in Canada. The new generation of researchers in this network has been successful in applying for funding from the Canadian Institutes of Health Research to address gaps for underserved populations. These projects include palliative care for people who are vulnerably housed, as well as for frail elderly with neurological conditions such as Alzheimer's Disease or multiple sclerosis, and will help to inform future improvements in palliative care.
So that the care goals of all people with serious illness and their caregivers are supported, and they benefit from a palliative approach to care, all governments and partners could:
- Use a lens of cultural sensitivity and age-appropriateness, and to continue to look for ways to integrate palliative care across care settings;
- Focus on inclusive palliative care policies, programs and services to reduce barriers to access;
- Continue to engage with First Nations, Inuit and Métis people and to support community-led initiatives to address the needs they identify;
- Invest in scaling and spreading innovative models of care, particularly for Indigenous Peoples and other underserved populations (for example, seriously ill children and their families and for those experiencing illnesses other than cancer); and
- Develop palliative care policies, programs, and services that are inclusive and considerate of all ages, sex and gender, and cultural diversity.
A continued focus on spreading and scaling innovative care models will help to improve access for people who have not been well supported by traditional models of care.
Moving forward, there are many opportunities to continue to address the palliative care needs of people living with serious illness, their families (or chosen families), and their communities. Provincial, territorial and federal governments, non-governmental organizations and communities could continue to prioritize palliative care improvements. Health Canada will continue looking to support innovative projects to improve access, coordinate knowledge exchange opportunities and the sharing of promising practices in palliative care so that we may continue to learn and improve together. Collaborative action by governments at all levels, non-governmental organizations and communities on the longer-term goals of the Framework will help further our progress to close the gaps in access to quality palliative care in the years to come.
Appendix A: Blueprint for the Framework
- Palliative Care is Person- and Family-Centred
- Death, Dying, Grief and Bereavement are Part of Life
- Caregivers are Both Providers and Recipients of Care
- Palliative Care is Integrated and Holistic
- Access to Palliative Care is Equitable
- Palliative Care Recognizes and Values the Diversity of Canada and its Peoples
- Palliative Care Services are Valued, Understood, and Adequately Resourced
- Palliative Care is High Quality and Evidence-Based
- Palliative Care Improves Quality of Life
- Palliative Care is a Shared Responsibility
Vision: All Canadians with life-limiting illness live well until the end of life
- Long term goals 5-10 years
- Canadians and caregivers understand and plan for palliative care, and develop Advance Care Plans
- All providers have increased capacity to deliver quality care, and caregivers have appropriate supports to perform their roles
- All Canadians and caregivers have consistent access to an integrated palliative approach to care
- Research, data collection and best practices support and inform policy decisions and government directions about palliative care
- Governments, stakeholders, caregivers and communities cooperate to help achieve the goals of Canadians during the entire period of care
- Medium term goals 2-5 years
- There is an increased awareness of palliative care, and greater understanding and uptake of advance care planning and advance care directives
- Palliative care providers have access to training, education, and tools to meet the goals of individuals and their caregivers
- Caregivers and providers are aware of and can access supports to meet the goals of the individual and their caregivers
- Mechanisms to facilitate consistent access are advanced, and barriers are addressed
- Research is undertaken, applied, and promoted, and data collection activities are planned and reported to align with policy goals
- Action aligned with the Framework is taken at multiple levels (governments, stakeholders, caregivers, and communities) to improve palliative care and achieve the goals of individuals with life-limiting illness
- Short term goals
- The range of wishes and needs of people with life-limiting illness are identified
- Training and education needs are identified for health care providers and caregivers
- Supports required for palliative care providers and caregivers are identified
- Best practices and barriers to consistent access to palliative care are identified
- Existing research and data collection gaps are identified
- A common framework is developed to guide action and improve access to palliative care in Canada
Palliative care definition: An approach to care that improves the quality of life of people of all ages who are facing problems associated with life-limiting illness, and their families. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
Health Canada. (2018). Framework on Palliative Care in Canada.
Appendix B: Provincial and territorial efforts across Canada
The following information on provincial and territorial initiatives is from text provided either directly to Health Canada or through the Canadian Cancer Society's 2023 Report on Hospice Palliative Care Across Canada: A review of federal, provincial, territorial and community actions (the latter is identified with an asterisk) (Canadian Cancer Society, 2023).
|Sample efforts in palliative care
Other areas of focus include:
|Prince Edward Island*
|Newfoundland and Labrador*
Antonacci, R., Barrie, C., Baxter, S., Chaffey, S., Chary, S., Grassau, P., Klinger, C. A. 2020. Gaps in Hospice and Palliative Care Research: A scoping review of the North American literature. J Aging Res, 3921245. doi:10.1155/2020/3921245
Canadian Cancer Society. (2023). 2023 Report on hospice palliative care across Canada: A review of federal, provincial, territorial and community actions. Canadian Cancer Society. Toronto, ON.
Canadian Grief Alliance. (2023). Retrieved from https://www.canadiangriefalliance.ca/
Canadian Hospice Palliative Care Association. (2021). Canadians and Advance Care Planning. A Snapshot of Current Trends. Summer 2021. Retrieved from https://www.advancecareplanning.ca/wp-content/uploads/2021/08/ACP_2021Poll_Summary_EN_FINAL.pdf
Canadian Institute for Health Information. (2018). Access to Palliative Care in Canada. Retrieved from https://secure.cihi.ca/free_products/access-palliative-care-2018-en-web.pdf
Canadian Institute for Health Information. (2023a). Access to Palliative Care in Canada. Retrieved from https://www.cihi.ca/sites/default/files/document/access-to-palliative-care-in-canada-2023-report-en.pdf
Canadian Institute for Health Information. (2023b). Caregiver Distress. Retrieved from https://yourhealthsystem.cihi.ca/hsp/inbrief?lang=en#!/themes/001/access
Canadian Partnership Against Cancer. (2022). Beginning the journey into the spirit world: First Nations, Inuit and Métis approaches to palliative and end-of-life care in Canada. Canadian Partnership Against Cancer. Toronto, ON.
First Nations of Quebec and Labrador Health and Social Services Commission. (2023). Toward a continuum of long-term person-centred care and services: Final Report—First Nations in Quebec. Retrieved from https://cssspnql.com/en/produit/toward-a-continuum-of-long-term-person-centred-care-and-services-final-report-first-nations-in-quebec/
Fruch, V., Monture, L., Prince, H., & Kelley, M. L. (2016). Coming home to die: Six Nations of the Grand River Territory develops community-based palliative care. International Journal of Indigenous Health, 11, 1: 50-74.
Government of Canada. Reports: Employment Insurance (EI)—Monitoring and Assessment reports. Retrieved from https://www.canada.ca/en/employment-social-development/programs/ei/ei-list/reports.html#Monitoring
Government of Canada. (2021). Budget 2021: A Resilient and Inclusive Recovery. Retrieved from https://www.budget.canada.ca/2021/report-rapport/p3-en.html#
Government of Canada. (2022). Health Care Policy and Strategies Program. Retrieved from https://www.canada.ca/en/health-canada/programs/health-care-policy-strategies-program.html
Government of Canada. (2023a). Indigenous health care in Canada. Retrieved from https://www.sac-isc.gc.ca/eng/1626810177053/1626810219482#
Government of Canada. (2023b). Palliative Care: Overview. Retrieved from https://www.canada.ca/en/health-canada/services/health-services-benefits/palliative-care.html
Government of the Northwest Territories. (2019). Mandate of the Government of the Northwest Territories 2019–2023. Retrieved from https://www.eia.gov.nt.ca/sites/eia/files/mandate2019-english-pages-web.pdf
Health Canada. (2019). Action Plan on Palliative Care: Building on the Framework on Palliative Care in Canada Retrieved from https://www.canada.ca/content/dam/hc-sc/documents/services/health-care-system/reports-publications/palliative-care/action-plan-palliative-care/action-plan-palliative-care-eng.pdf
Kellehear, A. Health promoting palliative care: developing a social model for practice. 1999. Mortality, 4,1:,75–82.
Pallium Canada, British Columbia Centre for Palliative Care, & Hospice Palliative Care Ontario. (2023). Evaluation Guide for Compassionate Communities. Canada.
Parliament of Canada. (2017). An Act providing for the development of a framework on palliative care in Canada. First Session, Forty-second Parliament, 64-65-66 Elizabeth II, 2015-2016-2017, December 12, 2017. Retrieved from https://www.parl.ca/DocumentViewer/en/42-1/bill/C-277/royal-assent
Pesut, B., Thorne, S., Huisken, A., Wright, D. K., Chambaere, K., Tishelman, C., & Ghosh, S. 2022. Is progress being made on Canada's palliative care framework and action plan? A survey of stakeholder perspectives. BMC Palliat Care, 21(1): 182. doi:10.1186/s12904-022-01074-4
Prince, H. (2022). Walking alongside Indigenous Peoples who are seriously ill: education for community caregivers. Centre for Education and Research on Aging & Health, Lakehead University. Thunder Bay, ON.
Widger, K., Davies, D., Rapoport, A., Vadeboncoeur, C., Liben, S., Sarpal, A., Stenkes, S., Cyr, C., Daoust, L., Gregoire, M.C., Roberston, M., Hodgson-Viden, H., Laflamme, J., & Siden, H. 2016. Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study. CMAJ Open, 4(4): E562-E568. doi:10.9778/cmajo.20160054
- Footnote 1
This report was prepared by the Canadian Cancer Society's Don Green Palliative Care Advocacy Team.
- Footnote 2
Compassionate Communities are emerging in Canada as a response to the experience of living with serious illness, dying and grieving. Through actively caring for people in difficult times, the Compassionate Communities movement (Kellehear, 1999) is committed to improving community members' lives. Compassionate Communities also raise awareness of health, well-being, and end-of-life issues. They support not only the person who is ill, but also caregivers and loved ones.
- Footnote 3
A palliative approach to care (sometimes called "primary- or generalist-level palliative care") includes the core elements of palliative care. This care can be provided by non-specialists such as primary care providers, social workers, spiritual care providers, personal support workers, volunteers, caregivers, and other community members. Most people with serious illness can benefit from this kind of care from the time of diagnosis and throughout their illness (even while undergoing treatments meant to cure). If symptoms or needs become complex, primary care providers can refer the patient to a palliative care specialist or team for more comprehensive care (often referred to as "specialist-level palliative care") (Government of Canada, 2023b).
- Footnote 4
InterRAI instruments are evidence-based, standardized, and validated tools used for patient assessment across different care settings.
- Footnote 5
A Peoples-specific approach will be taken, developing unique Frameworks that reflect the voices of First Nations, Inuit, Métis, non-status/off-reserve Indigenous people, urban Indigenous people, and Intersectional Peoples. The Frameworks will also honour distinct goals and recommendations pertaining to palliative and end-of-life care.
- Footnote 6
For example: the Canadian Partnership Against Cancer's Beginning the Journey into the Spirit World: First Nations, Inuit and Métis Approaches to Palliative and End-of-Life Care in Canada. This document was informed by discussions with First Nations, Inuit and Métis Elders and Knowledge Carriers, and community health professionals and researchers with expertise in palliative care. It identifies factors that influence approaches to palliative care in these communities. The document also identifies promising practices and Indigenous-led solutions (Canadian Partnership Against Cancer, 2022).
- Footnote 7
The spelling of the term "wholistic" is preferred as it acknowledges the whole person and reflects the need for balance and harmony among the spiritual, emotional, mental and physical aspects of self.
- Footnote 8
Information for Quebec was gathered through an online search of publicly available information about palliative care. The Government of Quebec declined to participate in the Canadian Cancer Society survey (Canadian Cancer Society, 2023).
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