Thank you very much. I want to begin by acknowledging that we are meeting today on land that is the traditional and unceded territory of the Algonquin Nation.
Thank you for the opportunity to appear in front of you on this very important issue.
Palliative care improves the quality of life of people facing life-limiting illness. It eases their suffering and supports their families. Though it is an essential part of health care, it is often overlooked, so I'm happy that the committee has decided to study palliative care in Canada.
Canadians approaching the end of their lives deserve to receive care in the setting of their choice and live out their final days in comfort and dignity.
As you'll hear from my colleague at the Canadian Institute for Health Information, the unfortunate reality is that three-quarters of Canadians say they would prefer to spend their final days at home, yet 61% of Canadians still pass away in the hospital.
Access issues are complex and occur in all settings due to a number of factors.
Our society has a cultural tendency to deny the reality of death and this leads to a lack of planning, acceptance, and appropriate referrals. Meanwhile, our health system defaults to acute care when home care is usually preferred, and always more economical.
A lack of available providers, lack of understanding of the benefits of palliative care, and simple geography in the case of rural and remote communities are additional barriers to accessing quality palliative care.
In terms of Government of Canada measures, budget 2017 provided $6 billion over 10 years in targeted funding for provinces and territories for home and community care, including palliative care. This was done through a series of bilateral funding agreements. This funding is being used right now by provinces and territories on activities identified in these bilateral agreements, which are posted publicly.
For example, British Columbia is working to provide 24-7 access by health care providers to consultations with experts on pain and symptom management. Prince Edward Island is implementing an integrated mobile health program, which uses community paramedics to support palliative patients at home. Saskatchewan is providing training to health care professionals in order to improve their ability to provide end-of-life care. Many other provinces are undertaking initiatives of that sort.
The current bilateral agreements are in place until 2021-22, and the government intends to negotiate renewal of these agreements for the next five years through to 2026-27. That means the whole five-year period.
We also have a number of other measures under way to enhance access to end-of-life care. In 2017, the government provided $184.6 million over five years to improve home and palliative care for indigenous communities.
I'll now move to the framework and action plan on palliative care in Canada.
On December 4, 2018, the government tabled a framework on palliative care in Canada, based on consultations with a broad range of stakeholders, to bring focus to the benefits of palliative care and the access issues faced by Canadians. The framework gives Canadians, governments, stakeholders, individuals, caregivers and communities a common reference point to help us better collaborate and coordinate our efforts.
In August 2019, Health Canada released an action plan on palliative care, which builds on the framework. The action plan lays out Health Canada's five-year plan to tackle issues identified in the framework, using federal levers.
The federal action plan aims to help improve quality of life for people with life-limiting illness, address concerns of families and caregivers, and enhance access to quality palliative care, through improved health care system performance.
The action plan aligns with the framework on palliative care in Canada and focuses on five key goals.
The first is to raise awareness and understanding of how advance care planning and palliative care improve quality of life until the end of life. For example, Health Canada is developing awareness-raising initiatives to increase understanding of the benefits of palliative care and how to access it.
Secondly, we aim to support health system quality by improving palliative care skills and supports for health care providers, families, caregivers and communities.
To this end, Health Canada has been pleased to support Pallium Canada's efforts to scale up post-graduate inter-professional training that provides essential palliative care competencies to health care professionals, such as paramedics.
The third goal focuses on supporting health system quality improvement through enhanced data collection and research. Through the Canadian Institutes of Health Research, or CIHR, the federal government is supporting innovative research to address knowledge gaps and develop new models and approaches to palliative care based on scientific evidence. For example, CIHR is currently supporting a five-year research project to promote access to home-based palliative care for patients across Canada. This project will implement and test the effectiveness of palliative care training programs for 53 primary care teams across Ontario.
The Canadian Institutes of Health Research, or CIHR, is also supporting a Canada Research Chair in Palliative Care to examine ways of preserving dignity at the end of life through bedside and clinical observations, and by tracking and examining large cohorts of Canadians at the end of life.
The fourth action plan goal is to improve access to palliative care for underserved populations, which include rural and remote communities, pediatrics and young adults, homeless people and LGBTQ2SI people. Furthermore, we know that some communities face cultural and linguistic barriers that prevent them from accessing palliative care in a timely way.
To address this, Health Canada is supporting projects such as an initiative to improve the uptake of advance care planning in the South Asian and Chinese populations in British Columbia. This project aims to decrease language and cultural barriers inherent in end-of-life care discussions so that members of these communities may access culturally sensitive palliative care.
The fifth and final goal focuses on the unique characteristics, needs and challenges faced by first nations, Métis and Inuit peoples, as well as urban indigenous people in accessing palliative care.
Health Canada is currently working with Indigenous Services Canada, national indigenous organizations and others on next steps to deliver indigenous-led consultations toward a separate distinctions-based framework on palliative care.
Meanwhile, we are supporting indigenous-led initiatives such as the Cree Board of Health and Social Services of James Bay project, which aims to inform culturally adapted care practice guidelines based on Cree beliefs and practices.
Some action plan projects are under way already. To date, Health Canada has invested almost $13 million in projects to advance the objectives of the action plan and improve access to palliative care both at home and in the community. Through the action plan, we are striving to address access issues evidenced through current data and research, and reported by providers, people with lived experience and provincial and territorial representatives.
We know that most people with a life-limiting illness wish to remain independent and receive the care they need at home or in their community. Improving access to palliative care across all settings is critical to making this happen.
The current focus on medical assistance in dying, or MAID, is drawing attention to the need for improved access to palliative care. Palliative care stakeholders and MAID opponents have raised concerns that people may choose MAID as the only means to relieve their suffering because of inadequate access to palliative care.
However, preliminary data out of Ontario shows this not to be the case, and that the majority of recipients received or were offered palliative care prior to receiving MAID.
It should be clear—this does not negate the need to enhance access to palliative care and to continue to monitor and study the situation. Our vision is that all Canadians have access to quality palliative care from diagnosis to end of life, regardless of whether they choose medical assistance in dying in their final days.
To conclude, we will continue to press forward to implement our action plan, and to build on the many promising practices in providing excellent palliative care.
We all want to live out our lives in comfort and dignity. Appropriate care must be available when it's most needed. I believe our work will help to move the marker forward on this.
I thank you for the opportunity to make these remarks. Sharon Harper and I will be pleased to answer your questions when the time comes.
On behalf of the Canadian Institute for Health Information, CIHI, I would like to thank you for the opportunity to appear before the Standing Committee on Health.
Since 1994, CIHI has been an important organization in Canada's health sector. We are a not-for-profit, independent body funded by the federal government and all provinces and territories. Our board of directors is made up of deputy ministers of health and other health system leaders representing all regions of the country and the federal government.
CIHI has 28 databases and signed data-sharing agreements with every province and territory, Health Canada, Statistics Canada and the Public Health Agency of Canada. CIHI is a leader in health data methodologies and measurement of health system performance, and we are recognized internationally for our work.
At the Canadian Institute for Health Information, also known as CIHI, we are neutral and objective in fulfilling our mandate to deliver comparable and actionable information. Our aim is to give people, including policy-makers, the information they need to drive improvements in health care and health system performance and, ultimately, to improve the health of Canadians across the country.
The topic we are here to talk about today is palliative care. Canadians are living longer, but they are not always living better. Thanks to improved medical treatments, declines in health are now more gradual, but this can also draw out the process of dying. When this happens, palliative care can help improve quality of life for people with life-limiting illnesses by relieving symptoms, enabling a peaceful and dignified death and providing support to the family throughout the dying and bereavement process.
As Canada's population ages and rates of complex chronic conditions increase, the need for palliative care is expected to rise. Estimates suggest that up to nine out of 10 people who die might have benefited from palliative care.
In September 2018, CIHI released its first comprehensive pan-Canadian report on this topic: “Access to Palliative Care in Canada”.
The goal of this report was to provide baseline information on palliative care in our country by using available data from CIHI and other sources. The report looks at what services Canadians received in their last year of life.
Specifically, it examines whether Canadians had access to palliative care in the community, whether they had equitable access to care and whether the services they received were effective and appropriate. It also looks at whether health professionals are prepared to provide palliative care and whether patients and their families are receiving the support they need to care for people at home.
In discussing our findings, let me start with access to palliative care in the setting many patients prefer: their home. While many people could benefit from palliative care at the end of life, only a few are receiving formal palliative home care outside of hospitals. In provinces where this could be measured, we found that only one in six people who died received publicly funded palliative home care. Our study shows that receiving palliative home care increases the chance that you will die at home. This is important, because surveys have shown that most Canadians would prefer to die at home, provided the appropriate supports are in place. Our study found that people who received palliative home care were two and a half times more likely to die at home than Canadians who received regular home care in the last year of life.
Friends and family members play an essential role in palliative home care, although more support for caregivers may be needed. Our report found that 99% of palliative home care clients had family or friends helping to care for them, and almost one in three of these unpaid caregivers experienced distress.
The timing of palliative care can also make a difference. Our findings show that Canadians who received palliative care earlier in their care journey, before the last 30 days of life, were less likely to make frequent visits to emergency rooms or to receive aggressive treatment at the end of life. This provides evidence that access to early palliative care in the community can help reduce poor outcomes for patients at the end of life. However, we found that most people received palliative care only very late in their care journey. In fact, 62% received palliative care only in the last month of life and only in a hospital setting.
For residents of long-term care facilities, palliative care also made a measurable difference at the end of life. We found that long-term care residents who had a record of receiving palliative care in their nursing homes were far less likely to be transferred to hospital to die. These transfers can be stressful for both patients and their families.
We also set out to understand whether Canadians had equitable access to palliative care and whether some patients were more likely to receive it than others. We found the biggest differences were based on the type of disease a person had. Patients with cancer were up to three times more likely to receive palliative care than patients with other illnesses who could also have benefited from palliative care in the last year of life. Age was also a determining factor. Patients between 45 and 74 were more likely than younger adults and older seniors to receive palliative care across most care settings.
The issue of health care provider training and communication with patients is an area of great interest to palliative care patients and their families. We examined whether health care providers felt prepared to provide palliative care to patients in Canada. Results from the Commonwealth Fund international survey of primary care physicians show that while most Canadian family doctors often see patients with palliative care needs, three out of five of these physicians say they do not feel well prepared to manage the care of palliative patients. This finding is below the international average of their peers in 11 developed countries.
Our findings also identified significant variation across the country in policies and programs that influence access to palliative care in the community, including access to residential hospices. At the time CIHI’s report was published, residential palliative care hospices operated in only seven out of 13 jurisdictions. Public funding models also varied across the country, from 30% to 100%, depending on the hospice.
Finally, we looked at whether patients who chose medical assistance in dying accessed palliative care. Of those patients who received medical assistance in dying in hospital settings after June 2016, the first year data was available, we found that 65% received some palliative care during their final hospital stay. However, only about one in five of these patients had a palliative treatment plan prior to their final hospital admission.
CIHI's palliative care report represents a collaborative effort with our national, provincial and territorial partners to provide the most comprehensive picture to date of access to palliative care in Canada. Our findings highlight opportunities to improve transitions of care and to initiate palliative care earlier in a patient's journey.
However, data and information gaps remain. This report identified the need for more pan-Canadian information on home care, hospice care and primary care. It also identified the need for more patient- and family-reported data, or using the voice of patients to understand whether their needs are being met and whether palliative care is making a difference in improving their quality of life.
The lack of a common definition of palliative care across the country was also identified as a gap in the report. A clearer definition and some guiding principles have since been provided in the national framework on palliative care in Canada, which Health Canada has talked about.
CIHI continues to work collaboratively with provinces and territories to improve data collection and measurement of palliative care in Canada. For example, we're improving our emergency room data; we're expanding home care data coverage; and we are continuing to work with our national and international partners, such as the Commonwealth Fund, the OECD, the Canadian Partnership Against Cancer, and Statistics Canada, all of which play a vital role in collecting and reporting information on palliative care.
We are also working with the federal, provincial and territorial governments to measure access to community services as part of the “Common Statement of Principles on Shared Health Priorities”. One indicator scheduled for release in 2022 will measure death at home and is aimed at enhancing access to palliative care at home or in hospices.
In closing, as our data and information improve, we will continue to have a clearer picture to enable the sharing of best practices and to identify areas for improvement. This will help to provide better experiences for patients and their families at all stages of life. More broadly as a society, there is also a recognized need for more frank and open discussions about death and the dying process, to ensure that Canadians have an opportunity to express their wishes and have advanced care plans in place to ensure these wishes are respected.
Thank you for giving us the opportunity to speak today.
I would be pleased to answer questions from members of the committee.