Canada cannot have assisted-dying laws without solid policies and programs for end-of-life care.
With Canada’s assisted-dying dying legislation currently before Parliament, it becomes increasingly urgent for the Liberal government to make substantive commitments to policies and programs that will support this sea change in the health-care system.
During the election, the Liberals committed to investing $3 billion over four years to increase access to home care, reduce the cost of prescription drugs, increase the availability of mental health services and improve the flexibility of compassionate-care leave. None of these commitments were included in the recent budget, and the Liberal platform made no commitments for increased investment in either palliative or end-of-life care, or in a national strategy on Alzheimer’s disease.
As Canada’s aging population grows, our assisted-dying dying legislation cannot stand in isolation – the federal government must do its part to ensure doctors, health-care providers and families receive adequate options and pathways for care at the end of life.
So, what are some of the social policies that are needed to support the assisted-dying dying legislation? In its nationwide consultations, the Canadian Medical Association (CMA) identified the importance of advance-care planning (ACP), palliative care, long-term care, home care, a national seniors’ strategy, and research and investment in Alzheimer’s as parallel issues to assisted dying.
ACP is a reflection and discussion process that encourages individuals approaching the end of their lives to discuss their care preferences with a trusted individual. The language around it is particular to each province and territory – some jurisdictions describe it as a living will or personal directive, and the decision-making individuals may be described as substitute decision-makers, health-care proxies or agents. Advance-care plans are typically expressed in a power of attorney for personal care. ACP goes hand-in-hand with assisted dying – medical professionals have an important role to play in supporting patients with their end-of-life-care decisions. Advocacy campaigns across Canada, such as Speak Up, are leading the efforts to educate medical professionals and families about the importance of planning for the end of their lives. The CMA recently developed a policy on the subject, and the issue is increasingly important because of Bill C-14’s exclusion of individuals with dementia and degenerative neurological diseases.
While the medical and legal frameworks for ACP are a provincial jurisdiction, the federal government should at a minimum support the forthcoming assisted-dying dying legislation by investing in ACP education and training for health-care professionals and launching public awareness campaigns. We have a lot to learn from other jurisdictions, including the United Kingdom’s Gold Standards Framework training institute and Australia’s National Framework for Advanced Care Directives.
During the CMA’s consultations, several doctors remarked that their greatest fear was that a lethal injection will be more accessible than palliative care (which is currently only accessible to 30 percent of Canadians).
Palliative care is a critical pathway toward the end of life for many Canadians, whether they intend to access assisted dying or not. Currently, there is a disconnect between the demand for and actual access to palliative care. The Canadian Hospice Palliative Care Association notes that while most people express the desire to die at home with their loved ones, almost 70 percent of deaths in Canada occur in hospital. Families typically shoulder 25 percent of the costs of palliative care, in particular, the cost of personal attendants and home care to relieve family members’ caregiving burden.
While there are innovative models of delivering palliative care, actual access to high-quality palliative care varies by region and health provider. We need a Pan-Canadian palliative and end-of-life care strategy. In 2014, NDP MP Charlie Angus successfully moved such a strategy in Private Members’ Motion M-456. Dealing with issues of access, funding and standardization, Angus’s motion was nearly unanimous, but nonbinding. It calls for support for family caregivers and increased access to home-based and hospice-based palliative care. Canada’s assisted-dying legislation would only be strengthened with national direction on palliative care, which is long overdue.
Long-term care and home care
The long-term-care sector will be a critical partner for implementing, supporting and evaluating assisted-dying requests when the proposed legislation becomes law. Home-care workers and health-care providers in long-term-care facilities, alongside family members, are often the last to care for dying patients outside hospital settings. For many Canadians, long waiting lists to access limited long-term-care spaces are a significant barrier. Regional disparities in access, quality and affordability also exist, and multiple advocacy organizations have emphasized the need for national leadership on issues of elder abuse and neglect in long-term-care facilities.
Similarly, home-care services are often described as a patchwork system that is difficult to access and retain, and for which not many subsidies are available. In 2012, nearly half a million Canadians reported having unmet care needs in the home. Lower-income and immigrant Canadians are more likely to report having unmet care needs in the home, resulting in higher stress levels, self-reported loneliness and isolation, and sleep problems. Implementation of the Liberals’ campaign commitment to make “real and immediate investment in home care for Canadians” will be critical, as home care is integral to maintaining individuals’ quality of life, supporting aging in place, and reducing the burden on unpaid family caregivers: in sum, transitioning to the end of life.
National seniors’ strategy and Alzheimer’s
In her final letter to Canadians before she committed suicide, Gillian Bennett noted, “I can live or vegetate for perhaps ten years in hospital at Canada’s expense, costing anywhere from $50,000 to $75,000 per year. That is only the beginning of the damage. Nurses, who thought they had embarked on a career that had great meaning, find themselves perpetually changing my diapers and reporting on the physical changes of an empty husk. It is ludicrous, wasteful and unfair.”
People have differing reasons for why they want to access assisted dying, and they are highly personal. However, a common pattern in their statements is an awareness of, and profound familiarity with, the systems they will face as they age and as their diseases progress. Many of those who want to access assisted dying in Canada had navigated these legal, medical and financial issues for years, if not decades. That is why addressing Canada’s systemic health care issues, as well as the policy and program gaps that render it impossible to provide dignity and high-quality care for many individuals at the end of their lives, are just as essential as drafting strong assisted-dying legislation.
A national senior’s strategy will be essential to improving seniors’ quality of life, supporting families and caregivers, and planning for Canada’s rapidly aging population. Canada currently has one geriatrician for every 15,000 Canadians, and there are significant gaps across the country in the quality, cost and access to care. More than 8 million Canadians act as unpaid family caregivers, many of them caring for the thousands of Canadians living with various stages of Alzheimer’s. Alzheimer’s alone is expected to cost Canada $33 billion per year in medical costs and lost earnings. Even though Bill C-14 currently excludes individuals living with Alzheimer’s, there will inevitably be legal and political questions about this in the future. It is in the Liberals’ best interests to move forward on the Alzheimer’s issue, regardless of whether it is incorporated in the legislation.
Calls for a Canadian national seniors’ strategy intensified in 2015 – everyone from the CMA to the IRPP held consultations across the country, identifying key issues and laying impressive groundwork for a future strategy. Lack of political will, however, holds us back – discussion of a national seniors’ strategy during the federal election was very limited, and it is still a political black box. An effective seniors’ strategy would provide a framework for all of the issues I have described – access, affordability and advance planning.
What comes next?
Some provinces have acted quickly to commit the necessary health care and social service resources. In March, Ontario committed $75 million in additional funding to end-of-life care, including caregiver resources, support for up to 20 new hospices and the promotion of ACP.
For advocacy organizations like Dying with Dignity Canada, the full legalization of assisted dying cannot come soon enough. Countless Canadians – including Gillian Bennett and Gloria Taylor – have left an important legacy for assisted dying in Canada, and it is imperative that we introduce additional social and health policies to support Canadians’ choices, autonomy and access to care at the end of their lives.
There is a clear consensus among Canadians on access to assisted dying – 77 percent of Canadians support access to assisted dying for terminally ill individuals. Only if we address the systemic issues Canadians experience at the end of their lives – regardless of whether they opt to access assisted dying or prepare for a natural death – can we ensure they end their lives with meaningful choice, dignity, and high-quality care.
Assisted-dying legislation is one individualistic legal framework within a complex set of systemic issues about health care, caregiving and aging. If we do not address the issues of palliative care, advance-care planning, long-term care and a national senior’s strategy, in parallel with assisted dying, we risk creating a social policy vacuum.
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