Palliative Care—InquiryPublished on 13 June 2017 Hansard and Statements by Senator Jane Cordy
Hon. Jane Cordy:
Honourable senators, it is my pleasure to rise today to call the attention of the Senate to the importance of identifying palliative care as an insured health service covered under the Canada Health Act and to the importance of developing a national strategy for uniform standards and delivery of palliative care.
The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems — psychosocial and spiritual.
In essence, honourable colleagues, palliative care is about living well until the end of life. By its very nature, palliative care embodies an integrated, whole-person vision of health care seeking to prevent and relieve suffering and distress in all its dimensions. In fact, in a 2013 Harris/Decima poll, 94 per cent of Canadians felt palliative care improves the quality of life for patients. Palliative care programs allow patients to gain more control over their lives and to manage pain and symptoms more effectively. Of course, palliative care programs provide support to family caregivers at what is a very vulnerable time for them.
Palliative care is about providing the right care, in the right place, at the right time. This requires an interdisciplinary team of both formal and informal care providers who provide care in all settings — hospitals, hospices, long-term care and home — to individuals and their families, regardless of age. So too should services be available in all parts of the country, whether urban, rural, remote or First Nations and Inuit communities. Yet there remains a patchwork approach to palliative care across Canada.
This is not the first time I have risen in this chamber to speak on the importance of palliative care. In fact, this important issue has been raised many times in this chamber, not just by me but by other colleagues on both sides of this house, particularly our former colleague the Honourable Senator Sharon Carstairs, who also served as Canada’s first and only minister with special responsibility for palliative care.
June marks the anniversary of the tabling of no less than three reports on palliative care in this chamber, in 2000, 2005 and 2010, all spearheaded by former Senator Carstairs. Adding the Special Senate Committee on Aging in 2009, the Social Affairs, Science and Technology Special Study on the Future of Health Care in 2002, both of which I had the honour of serving on, and the Special Senate Committee on Euthanasia and Assisted Suicide in 1995, there have been at least six reports in this chamber in the past 22 years that have included unanimous recommendations on the need for quality integrated palliative care.
Yet, despite these, and other national reports from the Romanow Commission, the Parliamentary Committee on Palliative Care and Compassionate Care of the other house, the Canadian Cancer Society, the Canadian Medical Association, the Canadian Nurses Association and others, there remain significant gaps in care. While there are pockets of excellence across the country, the lack of uniform national standards and stable funding has led to inequitable access to care for persons with life-threatening illnesses and their families.
There has definitely been an evolution in hospice palliative care since the first palliative care programs were established in Canada in 1974 in Montreal and in Winnipeg. Originally, palliative care was developed to support cancer patients, but treatment advances have helped extend our lives, not just in cancer care but for those with chronic illness or frailty.
Canadians are living longer, yet we are living longer with multiple chronic illnesses. Statistics tell us only 10 per cent of us will die suddenly. The other 90 per cent of us will require care and support at the end of life. However, no longer is it as easy to predict the terminal phase of an illness, especially since individuals can sometimes be living with multiple co-morbidities. Chronic diseases now account for 70 per cent of all deaths. Because of these complex health care needs, individuals can deteriorate suddenly and die, or they can experience periodic crises and complications which can lead to death, without that patient ever being identified as being near the end of life. The progression of diseases such as Alzheimer’s means that the trajectory of illness has changed, making it much more difficult to predict someone as being close to death.
At the same time, a paradox is being created as research demonstrates most older patients value quality of life and they want to avoid unnecessary prolongation of life through the use of technology. Yet aggressive life-sustaining technologies are often provided to patients during the final stages of illness and dying, even when the patient or family prefers comfort care.
Currently in the Western world, of those elderly patients who die in hospital, one in five of them die in the intensive care unit. The proportion of patients 80 years or older who are admitted to the ICU in Canada has increased from 10 per cent in the mid-1990s to nearly 20 per cent today.
Although technology can be extremely beneficial to support Canadians in living better and longer with chronic disease, there is mounting evidence that the unwanted use of technology at the end of life is associated with lower ratings of quality of life for both patients and families and results in increased family ratings of anxiety and depression. Understanding goals of care is critical to providing appropriate care. Yet in our death-denying society, those conversations are often not happening as they should.
So how do we close the care gap if being diagnosed as close to death is no longer the trigger to receive palliative care services? How do we ensure that patients and their families have an opportunity to talk openly about their health and the possibility of dying to ensure that their goals of care are met, especially as the goals may change over time?
As our population ages and additional stresses are placed upon our health care system, we need to find innovative ways to enable patients to live well until the end, to receive care in the setting of their choice and to reduce the demands on acute care resources. We also need solutions that allow us to provide quality care to all Canadians, regardless of where they live.
The Way Forward, a recent three-year federally funded project, led by the Quality End-of-life Care Coalition of Canada, has developed a national framework to implement an integrated palliative approach to care. The coalition itself is made up of 39 national health organizations, including the Canadian Medical Association, Canadian Nurses Association and the Canadian Hospice Palliative Care Association. In this pan-Canadian initiative, the coalition worked with federal, provincial and territorial policy-makers, health care providers, organizations, families and caregivers across all sectors.
The integrated palliative approach to care focuses on advanced care planning and care for people with life-limiting illness, across all health care settings, to meet a person’s and family’s full range of needs — physical, psychosocial and spiritual — at all stages of illness or stages of frailty, not just at the end of life. By moving away from thinking of palliative care as end-of-life care once curative treatment has stopped and instead embracing a palliative approach to care that can be delivered by a range of health care providers armed with basic palliative care knowledge, we can provide care in all settings, as well as rural and remote communities.
The palliative approach to care is a shared care model, where expert teams support local care teams and share the care, recognizing that, while 90 per cent of those who die can benefit from palliative care supports, only about 15 per cent of dying Canadians will receive highly specialized expert care because of complex care needs. In these cases, referrals to expert palliative care teams would be made.
The palliative approach recognizes the whole person, leading to a better use of health care resources, more autonomy and control for patients, seamless transitions and better care outcomes.
As an example of the palliative approach to care in practice, a new program has been initiated with paramedics in Nova Scotia and Prince Edward Island, who have been given some basic palliative care education, allowing them to provide after-hours, in-home care for palliative patients more effectively and to reduce transfers to hospitals if patients do not want to go. The initiative is now being examined by Alberta.
Honourable senators, there is no doubt that provincial and territorial governments are responsible for the delivery of health care services. However, the federal government does have a role to play. It is responsible for setting and administering national standards through the Canada Health Act, providing funding support through transfers to the provinces and territories, and as a direct care service provider. The federal government has responsibility to six specific groups in Canada: First Nations and Inuit, Canadian Forces personnel, veterans, Royal Canadian Mounted Police, inmates in federal penitentiaries, and refugee claimants. In fact, the federal government is the fifth largest provider of health care services in Canada and in terms of dollars spent.
The federal government also has a role in providing national leadership, in bringing people together to share best practices, a responsibility that, in my view, extends to supporting the development of a national strategy for uniform standards and delivery of palliative care in Canada.
The Canada Health Act does not specifically mention palliative care. The function of the Canada Health Act is to establish the conditions and criteria that the provinces must meet in order to qualify for federal funding transfers. The Health Act makes a distinction between insured services, which are medically necessary hospital and physician services and must follow the five criteria outlined in the act for their delivery, and non-insured services, so-called extended services, which are left to the provinces to determine if and how they will be delivered. It is under extended services that palliative care has fallen, resulting in a patchwork of approaches across the country.
Honourable senators, there have been numerous organizations that have recommended that the Canada Health Act be amended to include palliative care services as an insured service under the act. In fact, in 2002, the Senate Social Affairs, Science and Technology Committee, on the future of health care in Canada, called for a review of the act to include such services as home care, pharmacare and palliative care. The 2002 Romanow Commission report also called for inclusion of palliative care services in the act. In 2011, the All-Party Parliamentary Committee on Palliative Care and Compassionate Care, in the other place, recommended that:
. . . the federal government in collaboration with the provinces and territories implement a right to home care, long term care and palliative care, for all residents of Canada, equal to the current rights in the Canada Health Act, to those services defined as “insured health services”, including hospital services, physician services and surgical dental services.
In 2016, the Liberal Party of Canada passed a resolution at its policy conference calling for, in part:
. . . new, fully cost accounted legislation to implement, in cooperation with the Provinces and Territories, national programs in home and palliative care that are universal and accountable and complementary to the Canada Health Act.
Most recently, in November 2016, Covenant Health hosted an independent lay panel of Canadians to review the scientific evidence, engage in debate and develop a national consensus on palliative care, under an initiative known as Palliative Care Matters. This national dialogue resulted in a consensus statement, which recommended that an accessible, equitable, portable and adequately resourced, integrated palliative care model be enshrined in the Canada Health Act.
The Canadian Cancer Society has called for palliative care to be embedded in federal and provincial health care legislation, with recognition that palliative care is an essential part of health care and that governments must guarantee that all Canadians have equitable access to it.
The Canadian Medical Association has adopted a policy statement that all Canadian residents should have access to comprehensive, quality palliative care services, regardless of age, care setting, diagnosis, ethnicity, language and financial status.
The Catholic Women’s League, at their national convention last August, also passed a resolution calling on the federal government to amend the Canada Health Act to include palliative care as an insured service under the act. The resolution also called for the development of uniform national standards.
In 2014, the World Health Organization passed a resolution urging member states to ensure palliative care is available and accessible, stating that:
. . . palliative care is an ethical responsibility of health systems.
Honourable senators, amending the Canada Health Act would be no easy undertaking. The current act is the result of some compromise. However, recognizing palliative care and a palliative approach to care as medically necessary, insured services may be desirable. In fact, arguments are now being made that there is a constitutional duty to do so.
In 2011, an article was published in the McGill Journal of Law and Health by Yude M. Henteleff, Mary J. Shariff and Darcy L. MacPherson. The article examined whether palliative care was an enforceable human right, identifying two potential Charter challenges, under sections 7 and 15 of the Charter.
Section 7 protects the right to life, liberty and security of the person in accordance with the principles of fundamental justice. Section 3 of the Canada Health Act indicates:
. . . primary objective of Canadian health care policy is to protect, promote and restore the physical and mental well-being of residents of Canada and to facilitate reasonable access to health services without financial or other barriers.
The argument is that, rather than protecting and promoting —
The Hon. the Speaker: Senator Cordy, your time has expired. Are you asking for more time?
Senator Cordy: Please. Five minutes, please.
The Hon. the Speaker: Five minutes, honourable colleagues?
Hon. Senators: Agreed.
Senator Cordy: The argument is that, rather than protecting and promoting the mental health and well-being of Canadians, the inadequate and inconsistent funding for and access to palliative care is endangering the lives and security of persons, imposing an unacceptable level of psychological stress on those at end of life.
Section 15 of the Charter protects the right to equality without discrimination. The potential challenge is based on the argument that, since palliative care is provided unevenly to those who require it, the equality provisions of the Charter could compel equitable provision. The argument is discrimination on the provision of quality and affordable care suited to the specific needs of the aged and disabled.
As noted in a recent article from Bakerlaw, a law firm specializing in human rights and disability: “Current research is supporting a shift in thinking of palliative care as being medically necessary. If it is understood as a medically necessary service, then the failure to provide for it would be a violation of section 15 rights.”
Furthermore, according to Henteleff: “Quite simply, access to health care should be determined on the basis of need. If caring for the person is as important as curing the person, palliative care should fall within the definition of insured services under the CHA, and, in fact, justice demands it.”
Honourable senators, medical knowledge and practice do not sit still. They constantly advance and change. This chamber has, in the past, shown great leadership in bringing palliative care to the forefront of Canadian thinking. But, just as medical practice first recognized palliative care, then has advanced to embrace the palliative approach to care, our institutions must keep up. Palliative care is now a recognized medical necessity, but access to these services still depends on where you live in our great country. That, honourable senators, is unacceptable.