Constance MacIntosh outlines the recommendations of the Special Joint Parliamentary Committee on Medical Assistance in Dying (MAiD) with respect to mature minors accessing MAiD.
__________________________________________
In February 2023 the Special Joint Parliamentary Committee on Medical Assistance in Dying released its report. One of their mandates was to assess whether to extend medical assistance in dying (MAiD) to mature minors. There was both a majority set of comments and recommendations, and a dissenting set authored by the Conservative Party.
Some background is in order. Under the federal government’s legislation decriminalizing MAiD, certain criteria have to be met, including that the person be suffering intolerably from a grievous and irremediable health condition with a reasonably foreseeable death. Another criteria was that the person accessing MAiD be at least 18 years old.
The age criteria was met with concern, for being at odds with common law doctrines and statutory regimes across Canada, which all recognize that a person younger than 18 may have the requisite decisional capacity – the maturity – to consent to medical treatment, including withholding life-sustaining treatments. The federal MAiD legislation required the age criterion, among others, to be reviewed, resulting in the recently released report.
Photo Credit: Wikimedia Commons. Image Description: The interior of the Centre Block of the Canadian Parliament Building complex on Parliament Hill, in Ottawa.
They recommended amending the eligibility criteria for MAiD to include minors with decisional capacity. This recommendation followed on evidence of factors that can influence a minor’s decisional capacity, including their level of cognitive development, experiences with terminal illness, cultural and familial influences, and how they are supported through decision-making processes, as well as testimony from the parents of a terminally ill youth who wished to use MAiD to relieve their suffering and take control of their death, but were unable to do so. The Committee concluded there was an urgent need to not leave unaddressed the situation of youth experiencing enduring and intolerable suffering. While concluding the age criteria should be lifted, the Committee also found that decisionally-capable youth should be approached differently than adults.
First, they recommended undertaking and providing funding for consultations with minors with terminal illness, disabilities, those in child welfare and Indigenous youth, as well as others, on the topic of MAiD.
The Committee also identified safeguards for mature minors. One was a recommendation that country-wide standards of practice be developed for assessing the capacity of mature minors seeking MAiD. The development process would include provinces, territories, relevant organizations, and – importantly – Indigenous governments and communities.
Other recommended safeguards included not authorizing MAiD for mature minors whose death is not reasonably foreseeable (an eligibility criterion which had been lifted for adults), and to not make it available for youth suffering from a mental disorder. These limits were in response to concerns about youth suicide in Indigenous communities, the mental health challenges and discrimination which youth with disabilities may experience, and evidence that mental health disorders were unlikely to be irremediable prior to the age of majority.
The Committee also discussed the role of the family. The evidence was that in most cases youth and caregivers agree on end of life decisions to continue or withdraw treatment, but that ultimately the decision about whether to access MAiD should rest with the mature minor. As a result, they recommended that parents be consulted as part of the MAiD assessment process, but not have a veto right over a youth who possesses the requisite decision-making capacity.
The Committee’s final recommendation was that an independent expert panel evaluate and report on the changes to the law, in five years’ time.
On the path to their recommendations, the Committee visited concerns about inconsistent or inadequate access to high quality adolescent palliative care, and the lack of knowledge of what care may be available to relieve suffering. While emphasizing the importance of ensuring access to supports and specialized palliative care in a culturally appropriate manner, the Committee found that even excellent palliative care may not relieve suffering, or do so in a manner acceptable to the person.
The dissenting report centered around not endorsing extending MAiD to mature minors unless and until there was a standardized approach that could conclusive determine decisional capacity, including consensus on frontal lobe development, and that no inappropriately influencing factors were playing a role, such as experiencing stigma. The dissent raises important issues, but is notable for not engaging with the evidence or expert opinions which the majority found so convincing.
If the recommendations are brought into law, it is unlikely they will affect very many youth. However, according to the Special Joint Committee, for those few that could be affected, the removal of the age exclusion was essential to ensure youth are not left in a state of having a grievous and irremediable medical condition causing enduring and intolerable suffering that cannot be relieved by means acceptable to them until their 18th birthday.
Post script – on June 16th, the federal government issued its response to the Special Joint Committee Report. In response to the recommendations with regard to MAiD for mature minors, they wrote just two paragraphs:
In creating any policy or laws for mature minors, a key concern is finding a balance between freedom and personal autonomy and keeping minors safe from harm.
The committee received many submissions and testimonies regarding MAID and mature minors, indicating a need to better understand the voices of youth on this matter, including Indigenous youth, as reflected in the recommendations. Indigenous Peoples in Canada have encountered a history of systemic discrimination, cultural insensitivity, and mistreatment in the healthcare system. Furthermore, Indigenous minors face additional challenges in accessing pediatric palliative care, and are proportionally over-represented in the youth suicide crises. This creates tension in any discussions regarding MAID for mature minors in the Indigenous context as communities have highlighted the importance of life promotion. In Budget 2021 funding was directed to support research in areas that focus on MAID and the experiences of marginalized and/or racialized individuals, which could include persons with disabilities and mature minors. Indigenous engagement to better understand Indigenous Peoples’ views and experiences related to MAiD is already underway.
This suggests that there will not be any changes in the law as recommended by the Special Joint Committee for the foreseeable future, unless a minor and their family choose to turn to litigation.
__________________________________________
Constance MacIntosh is a Professor of Law in the Schulich School of Law and the Health Law Institute at Dalhousie University.
Impact Ethics 