The Evolution of MAID Laws in Canada: Significance for Parkinson’s Disease
The access to medical assistance in dying (MAID) is a cause for controversy due to its sensitive nature. The question of its ethicality has long created tension and obstacles in the creation of laws allowing MAID. Stories from those with family members who accessed MAID in Switzerland, where this practice has been legal since 1942, have encouraged the Western world to also allow this practice (1).
When Canada legalized MAID with Bill C-14 in 2016, a sense of hope resonated for Canadians suffering from terminal illnesses who had been seeking MAID (2). However, this bill implemented strict criteria, including that of a "grievous and irremediable disease” and a “reasonably foreseeable natural death” (3). Particularly in those with neurological conditions such as Parkinson’s Disease (PD), -whose complexity continues to be discovered- the criteria of a “reasonably foreseeable natural death” lacked clarity. Whether this criteria addresses the length of time that remains before a patient experiences death, or the probability that their irremediable disease is not responsible for their death created debate (4).
This confusion was remediated with the creation of Bill C-7 in March 2021, which broadened the criteria for access to MAID (5). This amendment added the possibility to access MAID for those without a reasonably foreseeable natural death (5). The significance of this amendment for those with neurological conditions can be seen in the annual report on MAID in Canada in 2021; of all those accessed MAID in 2021 with no reasonably foreseeable natural death, almost half were suffering of neurological conditions, or 45.7% (6). Indeed, Bill C-7 increased accessibility for those with neurological conditions. This acknowledges the reality and the suffering experienced by those with neurological conditions such as PD. Access to MAID provides PD patients the right to die with dignity amidst a disease that has the potential to strip them of independence, as supported by Dying With Dignity Canada, an organization that advocates for the protection of end-of-life rights (7). Access to MAID provides the right to an autonomic decision to end unwanted and unnecessary suffering. Though the ethical concerns surrounding MAID are valid, it is only those that are actually experiencing grievous suffering as well as their caregivers who can truly understand the depth of MAID’s significance.
Also to note, of all those who accessed MAID in 2021 with both a reasonably foreseeable and not reasonably foreseeable natural death, 12.4% were suffering from neurological conditions (6). Furthermore, 17.7% of these neurological conditions were represented by PD, being the second most common neurological condition listed as the cause of an individual accessing MAID after those suffering from amyotrophic lateral sclerosis (ALS) (6).
Though the creation of Bill C-7 made progress for the right to die with dignity in the PD community, there are still strides to be made. Specifically, advance directives for MAID remain prohibited. Advance directives would allow those who are likely to experience dementia, such as Alzheimer’s disease or PD patients, to consent to MAID in advance of the deterioration of their condition. As the current laws require patients to express consent to receive MAID immediately before it is ensued, those with dementia who experience memory loss and confusion may not be able to provide said consent at the time of MAID. Recent studies suggest that approximately 40% of those with PD experience dementia, thus proving the significance of offering advance directives for MAID (8). In order to provide support and accessibility for all members of the PD community, regulations for advanced directives to access MAID must be put in place.
In sum, though the creation of Bill C-7 has granted the right to die for patients suffering from neurological conditions whose natural death may not be reasonably foreseeable, modifications to the law are still required to increase accessibility. Allowing advance directives could cause an increase in the percentage of those who access MAID due to neurological conditions, which is currently on the lower end of 12.4% in 2021, as mentioned previously (6). This low statistic is likely due to the strict inflexible regulations of MAID and the complex nature of neurological conditions such as the potential of development of dementia.
Campaign For Dignity in Dying. Switzerland. Dignity in Dying. https://www.dignityindying.org.uk/assisted-dying/international-examples/switzerland/#:~:text=Since%201942%2C%20Switzerland%20has%20allowed
Government of Canada. What We Heard Report: A Public Consultation on Medical Assistance in Dying (MAID). www.justice.gc.ca. Published March 10, 2020. https://www.justice.gc.ca/eng/cj-jp/ad-am/wwh-cqnae/p1.html#:~:text=The%20MAID%20legislation%20(former%20Bill
Government of Canada. CANADA’S NEW MEDICAL ASSISTANCE in DYING LAW. https://www.justice.gc.ca/eng/cj-jp/ad-am/docs/MAID_Infographic_EN.pdf
Downie J, Chandler JA. Interpreting Canada’s Medical Assistance in Dying Legislation. Institute for Research on Public Policy; 2018.
Government of Canada. Medical assistance in dying. justice.gc.ca. Published July 26, 2022. https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html#a2
Health Canada. Third Annual Report on MEDICAL ASSISTANCE in DYING in CANADA 2021. Government of Canada; 2022. https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2021/annual-report-2021.pdf
Dying With Dignity Canada. About Us. Dying With Dignity Canada. https://www.dyingwithdignity.ca/about-us/
The Michael J. Fox Foundation for Parkinson's Research. Memory & Thinking Changes. The Michael J. Fox Foundation for Parkinson’s Research | Parkinson’s Disease. Published 2019. https://www.michaeljfox.org/news/memory-thinking-changes