November 9, 2017
Honourable senators, I rise in this chamber to speak in favour of Bill C-277, An Act providing for the development of a framework on palliative care in Canada. Specifically, I wish to address the urgency of passing this legislation and speak to the importance of timely and effective implementation.
Thousands of Canadians are suffering needlessly each year because they do not have access to palliative care. A 2016 study by the Canadian Cancer Society found that there are gaps in the system, there is no common definition of palliative care, and there is a lack of information about what services are available in which parts of the country.
At the time of the report’s release, Gabriel Miller of the Canadian Cancer Society expressed what we have long known, saying:
It has been a shameful secret of Canadian health care for many years that there are massive holes in the way that we care for our very sickest people, especially as they approach the end of life . . . .
Honourable senators, the current situation is unacceptable in a country like Canada, where we pride ourselves on making health care available to everyone. We are quite plainly failing the most vulnerable at the time when they need our help the most.
This is not the first time that parliamentarians have been faced with proposals to improve access to palliative care for Canadians. In 2011, the All-party Parliamentary Committee on Palliative and Compassionate Care released a report entitled Not to be Forgotten: Care of Vulnerable Canadians. In 2014, private member’s motion M-456 called for the establishment of a “Pan-Canadian Palliative and End-of-life Care Strategy.”
As countless expert witnesses have told us, the time for action is now. Fortunately, we are not starting from scratch. A wide range of information and resources have been established to guide the establishment of a national framework for palliative care. I would like to highlight the excellent work of The Way Forwardinitiative, led by Quality End-of-Life Care Coalition of Canada, managed by the Canadian Hospice Palliative Care Association, and funded by the former Conservative government.
The Way Forward culminated in the development of a comprehensive roadmap for an integrated palliative approach to care. Published in 2015, the report offers practical resources and tools to support governments, policy-makers, regional planners, health care organizations and providers. This document provides clear answers to questions that have been raised in committee and in this chamber about this legislation, and I encourage all senators to read it.
Beginning in 2015, I was very privileged to serve on the Special Joint Committee on Physician-Assisted Dying, along with fellow senators and colleagues from the other place. It became immediately clear to all of us who served on that committee that without a universal and accessible palliative care system in Canada, it would be extremely challenging to legislate physician-assisted death. Indeed, all witnesses who addressed the issue agreed that Canada must do more to improve access to palliative care.
The joint committee’s final report made important recommendations with respect to palliative care that are aligned directly with the framework provided for in Bill C-277. In that report, we called on Health Canada to re-establish a Secretariat on Palliative and End-of-Life Care; we asked Health Canada to work with the provinces and territories, and civil society, to develop a flexible, integrated model of palliative care by implementing a pan-Canadian palliative and end-of-life strategy with dedicated funding; and emphasized the need to develop a public awareness campaign on the topic.
By now, we have heard the shocking figure that only 30 per cent of Canadians have access to high-quality palliative care when they need it. Of course, this challenge is particularly acute in rural and remote areas. However, there is so much we still do not know about palliative care. That is why the framework’s objective to promote research and the collection of data is critical.
Rigorous scientific research is essential to inform sound, evidence-based decisions by clinical practitioners and policy-makers. However, palliative care research has historically suffered from a lack of strong public advocacy. As a result, the health research community has been limited in its ability to measure and report on palliative care services and practices across the spectrum of care because data are so sparse. Our limited understanding makes clear that we need better data to develop more meaningful ways to measure the quality and timeliness of palliative and end-of-life care in Canada.
The Canadian Partnership Against Cancer’s most recent report from September 2017 identifies three key barriers and gaps we must bridge to bring about change. First, we need to understand patterns of palliative and end-of-life care for patients across all health care settings better, including acute care hospitals, outpatient care, homes, hospices and long-term care facilities.
Second, it is crucial that we learn more about the alignment of patient preferences and goals of care with the care patients actually receive. As of 2017, no national data are routinely collected to identify a person’s care needs or preferred location of death.
Finally, information about inter-jurisdictional variations in access to community-based palliative care services will help inform solutions to address regional service disparities.
The framework’s commitment to research and data collection will also increase access to evidence-based care, improve the ability to evaluate interventions, and enhance the quality of education for health care providers.
Dr. Bernard Lapointe, Director of Palliative Care at McGill and Chief of Palliative Care Services at the Jewish General Hospital, had this to say about the importance of education:
Death is not optional, we will all face it one day; the teaching and learning about death should not be optional. Every provider should have core knowledge of palliative care.
Bill C-277’s focus on identifying the palliative care training and education needs of health care providers and other caregivers aims to address this knowledge gap. In committee, we heard that most physicians and nurses are not trained to provide palliative care. On average, medical and nursing students spend as little as 20 hours of their four years of study learning about palliative and end-of-life care.
The Way Forward observes that while this kind of shift requires changes to health care provider education, it also requires champions in all practice settings and in all health professions.
The good news is that tools are at the ready. By leveraging existing training initiatives, such as the Educating Future Physicians in Palliative and End-of-Life Care program, the Learning Essential Approaches to Palliative and End-of-Life Care program, along with national competencies in palliative care for nurses and social workers led by professionals and educators in those fields, we can adapt these programs to focus on an integrated palliative approach to care.
Before I conclude my remarks, I wish to remind honourable senators of the review and reporting requirement contained in clauses 3 and 4 of the bill. Within one year of this legislation being passed, the Minister of Health must prepare a report setting out the framework on palliative care. Within five years, the minister must prepare a report on the state of palliative care in Canada and report back to each house of Parliament.
I cannot overstate the importance of consultation as the framework is developed, especially with community partners. Given the volume of palliative care delivered outside of hospital and long-term facilities, it is critical that local community representatives have a seat at the table. This is particularly important when we recall that the majority of funding for residential hospices is raised by community organizations through public donations. For this reason, community sector representatives must be an equal and valued partner alongside the federal, provincial and territorial governments.
Honourable senators, Canada’s health care system was created nearly 50 years ago, when our population was just over 20 million and Canadians could expect to live until the age of 70. Today, we have a population of well over 30 million, and, on average, Canadians live a full decade longer. Our rapidly aging population is one of the most pressing policy challenges of our time. A comprehensive strategy that provides for the chronic and complex needs of our aging population must include access to quality palliative care. Bill C-277 helps to ensure that every Canadian can choose the end-of-life care they need, with the peace and comfort they deserve.