Second reading of Bill C-277, An Act providing for the development of a framework on palliative care in CanadaPublished on 20 September 2017 Hansard and Statements by Senator Jane Cordy
Hon. Jane Cordy:
Honourable senators, it is a pleasure to rise today at second reading of Bill C-277, an act providing for the development of a framework on palliative care in Canada. I would first like to thank Member of Parliament Marilyn Gladu for her work on this bill.
In essence, Bill C-277 would require the Minister of Health to consult with provincial and territorial governments and palliative care providers to develop a framework to support improved access to palliative care for Canadians as provided through hospitals, home care, long-term care and residential hospices.
The bill clearly outlines that the framework should define what palliative care is; identify the palliative care training and education needs of healthcare providers as well as other caregivers; identify measures to support palliative care providers; promote research and the collection of data on palliative care; identify measures to facilitate a consistent access to palliative care across Canada; take into consideration existing palliative care frameworks, strategies and best practices; and evaluate the advisability of re-establishing the Department of Health’s Secretariat on Palliative and End-of-Life Care.
Furthermore, the minister must initiate consultations within six months of the coming-into-force of the act and table the framework within one year. A five-year report on the state of palliative care must be tabled.
Honourable senators, let me clearly state that although I categorically support this bill in principle, I wish to raise several issues for consideration about whether this bill does, indeed, go far enough in providing direction for a framework. I would hope the committee which will eventually study this bill will consider the following issues.
First, the bill requires that a definition of palliative care be included in the framework. We should be careful not to waste time on debating a definition of palliative care in light of the work within The Way Forward initiative with all provincial and territorial jurisdictions and many national organizations to develop a clear roadmap to a palliative approach to care. How we die is changing, and we need to modify how we care for Canadians to meet their needs.
Honourable senators, when the first palliative care programs were established in Canada in 1974 at the St. Boniface General Hospital in Winnipeg, and a few weeks later at the Royal Victoria Hospital in Montreal, the focus was on caring for cancer patients at the end of life. These patients were suffering rapid decline, intractable pain and imminent death. A death trajectory of a few months was not unusual. Healthcare providers could predict with relative accuracy how long someone with a cancer diagnosis would have to live. Palliative care was aimed at relieving and supporting the physical, emotional and spiritual well-being of patients close to death. But that predictable decline is no longer common.
Although now, over 40 years later, cancer remains the leading cause of death, with significant advances in healthcare, in cancer treatment, and in the management of chronic diseases, Canadians are more likely to be living long term with two or more multiple chronic conditions. As Canadians age and become frail, these complicating conditions can lead to a long, slow deterioration or to periodic crises and complications where they are close to death. Research indicates many people now die with an illness that has no recognizable terminal phase, although they will have suffered from frailty or fragile health for many years. However, we continue to provide palliative services based on when someone is “close to death” when it has become harder than ever to predict when that may be for many Canadians.
In 2009, the Special Senate Committee on Aging, of which I and Senator Mercer were members recommended:
11. That the federal government fund a national partnership with provinces, territories and community organizations to provide the leadership and vision, standards, best practices, awareness, and support for capacity building necessary to ensure the provision of integrated quality end-of-life care for all Canadians
In 2013, the federal government did respond to this and similar recommendations and funded The Way Forward initiative, led by the Quality End-of-Life Care Coalition of Canada. The coalition is a network of 37 national organizations representing professional and family caregivers, volunteers, healthcare professionals in a variety of areas, disease groups, those with terminal illnesses and their families, and others with an interest in quality end-of-life care.
Working with the national advisory committee, many policymakers, healthcare providers, families, caregivers, organizations and provincial and territorial governments, the initiative prepared the National Framework: A Roadmap for an Integrated Palliative Approach to Care. At the core of this framework is the recognition that the old way of providing palliative care is no longer sufficient. As stated in the framework, an integrated palliative approach to care is:
Care that focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of a chronic progressive illness.
It reinforces the person’s autonomy and right to be actively involved in his or her own care – and strives to give individuals and families a greater sense of control. It sees hospice palliative care as less of a discrete service offered to dying persons when treatment is no longer effective and more of an approach to care that can enhance their quality of life throughout the course of their illness or the process of aging.
I would encourage us not to lose sight of the importance of refocusing on an integrated palliative approach to care.
Second, the bill requires that the consultation process “evaluates the advisability of re-establishing” the secretariat.
Honourable senators, the day after I was sworn in as a senator, I listened to the debate in this chamber on the committee report Quality End-of-Life Care: The Right of Every Canadian. That Senate subcommittee was chaired by our former colleague, the Honourable Sharon Carstairs, P.C. As you all know, in 2001 she became Minister with Special Responsibility for Palliative Care. In June of 2001, the Secretariat for Palliative and End-of-Life Care was established within Health Canada with an annual budget between $1 million and $1.5 million.
The secretariat was established to act as a focal point and facilitator of collaborative action in palliative and end-of-life care. In March 2002, the secretariat hosted the National Action Planning Workshop on End-of-life Care, with over 150 individuals, including researchers, educators, practitioners, and government representatives, to identify priorities.
Stemming from the workshop, the secretariat established five community-based working groups addressing the priority areas identified for action: best practices and quality care; education for formal caregivers; public information and awareness; research; and surveillance.
Great strides were made by these working groups, but the strategy ended in 2007, under the Harper Conservative government.
The bill only asks that the advisability of re-establishing the secretariat be examined. However, for change to occur, there does need to be consistent, national support for bringing people together, for coordinating, for identifying best practices and working in partnership with the provinces, territories and federal departments responsible for providing health care to Canadians. If not a secretariat, then what mechanism should be put in place to coordinate efforts under this bill?
Third, the bill specifies that the framework identify measures to facilitate consistent access to palliative care across Canada. This is rather unclear. There are currently no national standards for the provision of palliative care in Canada or for the education and credentials for health care providers who provide palliative care. The development of consistent standards that can be adopted by federal, provincial and territorial partners, would also assist in ensuring consistent access to care across the country.
Fourth and finally, the bill does not address issues such as public education and awareness or advanced care planning. Truly providing the right care, in the right setting, at the right time, means empowering Canadians, enabling them to make informed decisions about the care they want.
Caregivers, as well, need to be informed. Death is a part of life. Yet, we are a death-denying society. Often, this can lead to barriers to providing holistic, person-centred care. Breaking down these barriers is key to providing good care.
Senator Carstairs always used to say, “It’s not if we die; it’s when we die,” so we can’t continue to be a death-denying society.
Honourable senators, I support the second reading of this bill and look forward to its referral to committee for further study. During that study, I would hope that the committee will review some of the issues that I have raised.