[BECAUSE WE MUST LEARN FROM OTHER JURISDICTIONS WITH SUCH LAWS IN PLACE>>>]
Canadians love to boast about our publicly funded health care system that puts universal access above ability to pay — and we should be proud and safeguard it. But it often comes up short, particularly for persons with disabilities.
Currently, the Canada Health Act does not consider home care access, pharmacare, pain management and palliative care as essential health services. Thus, levels of these services provided publicly vary widely by province, creating inequities in access nationally.
Most Canadians do not have comprehensive access to these critical services and most cannot afford to pay for them privately. For a person with disabilities, for whom these services can mean the difference between living and thriving, or significant hardship, this shortfall can have catastrophic consequences.
This is especially true when it comes to the “choice” of medically assisted dying.
In 2016, in response to Carter v. Canada, Canada legalized Medical Assistance in Dying (MAiD) for persons with disabilities, illness and intolerable suffering within the context of nearing death.
However, in 2019, the Truchon v. Canada decision by the Superior Court of Quebec ruled that it was unconstitutional to require “foreseeable death” for those accessing MAiD. This ruling has prompted the federal government to consider removing the criteria of “nearing death” from Canada’s MAiD legislation.
What is remarkable is that both of these landmark court decisions were made in the absence of addressing existing inequities in home care, pharmacare and palliative care across the country.
Instead, the dominant discussion of MAiD has focused on issues of quality of life, capacity, and suffering largely to the exclusion of understanding the lives of people with disabilities within their full social, cultural and political contexts as inherently valuable citizens.
The government is currently consulting Canadians across the country on what they think should be the eligibility requirements for MAiD.
MAiD without a “foreseeable death” restriction, combined with significant shortcomings in health and social care for persons with disabilities, raises questions about what it means to live a dignified life, and for whom — and what role the Canadian Government has in supporting people with disabilities in the context of legalized MAiD. It raises issues of systemic marginalization and violence as persons with disabilities are not adequately protected or valued.
There are those who want to push MAiD to its limits. Yet current research into expanding the MAiD criteria to include mature minors, advanced directives and people with mental health issues is inconclusive and problematic unless inequitable accesses for disability services, health care, pain management, home care and end of life decision-making are also addressed.
The truth is, there are several things we still don’t know about MAiD where persons with disabilities are concerned — and we should know — given the gravity of the issue. Does access to home care and palliative care influence an individual’s decision to choose MAiD? Is MAiD a choice or is it a decision in the absence of other choices?