Mature minors and MAID: A deep dive into the issues of the Parliamentary Review

On March 17, 2021, Bill C-7 received Royal Assent, a huge milestone for medical assistance in dying (MAID) and end-of-life rights in Canada. With the new law in place, the next step is the Parliamentary Review committed to in the Bill. The review includes eligibility for MAID of mature minors and those with a mental illness, advance requests for MAID, the state of palliative care and the protection of Canadians living with disabilities.

As part of our mission to educate and share knowledge, we are examining each issue of the Parliamentary Review in a series of blog posts. We hope to give Canadians insight into the reason for, and importance of each issue. We also hope you will be motivated to advocate for one, or all of the issues by engaging your member of parliament in the coming months.

In this blog post, we will discuss mature minors and MAID.

Background

In February 2016, Parliament’s Special Joint Committee on Physician-Assisted Dying tabled their report on the proposed MAID legislation and what it should address. The Committee recommended a phased approach for minors: the law should be limited to competent adults 18 years or older in the first instance; the government should commit to a study of the moral, ethical and legal issues relating to the concept of “mature minor” and any appropriate standards to determine the competence of those under 18; and the legislation should then be amended to include mature minors.

The Council of Canadian Academies completed a comprehensive study of the domestic law regarding mature minors, as well as a comparative study of assisted dying laws as they apply to minors in other countries, and submitted their findings to the federal government in December 2018.

In many jurisdictions across Canada, mature minors already have the right to make important decisions regarding their care. This includes the right to consent to or refuse lifesaving medical treatment. In determining any challenges to the presumption of capacity to make these decisions, the courts look to age, maturity, intellect, life experience and the psychiatric, psychological and emotional state of the minor. They also consider whether the minor is able to understand the short and long-term consequences of their illness and proposed treatment, and the broader consequences of their decisions such as any impact on others.

DWDC position on eligibility for mature minors

DWDC agrees that the existing eligibility requirement that the person have a grievous and irremediable medical condition should apply to mature minors.

DWDC acknowledges that Canadian society will likely expect a minimum age for mature minors in the legislation, even though the emphasis at common law is on capacity and maturity and not chronological age. For this reason, DWDC asks that Parliament amend the existing age requirement of 18 years of age to extend it to persons: “at least 12 years of age and capable of making decisions with respect to their health.” As with adults, there should be a presumption of capacity for these minors.

DWDC’s position on safeguards for mature minors

DWDC is of the view that the safeguards that exist now are acceptable for eligible mature minors.

DWDC recommends that the informed consent of a competent parent or guardian be required for eligible minors seeking MAID who are 12 to 15 years of age inclusive, and that MAID assessors be required to consult a competent parent or guardian for eligible minors aged 16 and 17.

Insight from PhD candidate Sydney Campbell

Sydney Campbell

Sydney Campbell (she/her), MA, is a PhD candidate studying health policy at the University of Toronto in the Institute of Health Policy, Management and Evaluation. She is also completing a Collaborative Specialization in Bioethics through the University of Toronto Joint Centre for Bioethics. Sydney’s doctoral work aims to generate normative- and empirically-informed evidence to advise the current and future policy discussions concerning MAID for mature minors. Her overarching research program aims to advance perspectives and dialogue on childhood well-being, children’s rights, and young people’s engagement in health care and policy spaces.

Sydney’s PhD work is supervised by a strong committee of experts, namely: Jennifer Gibson, PhD; Jeremy Petch, PhD; Fiona Moola, PhD; and Avram Denburg, MD, PhD.

This is a controversial aspect of the parliamentary review. What would you like the Canadian public to understand about expanding MAID to mature minors?

One thing that I would like the Canadian public to understand is that like all health-related topics, there are a variety of opinions linked to conversations about MAID for mature minors. The existence of these different perspectives should not result in an avoidance of the topic, because avoidance uncritically perpetuates the status quo of mature minors being ineligible for MAID. Unfortunately, conversations about childhood death and dying are taboo, resulting in gaps in what we know about Canadians’ perspectives on MAID for mature minors, as well as conceptual gaps that need to be filled if we are to engage in policy reform.

The large knowledge gaps on this topic were acknowledged in a 2018 report released by the Expert Panel Working Group on MAID for Mature Minors convened by Council of Canadian Academies. One major gap is that young people have not been included in policy conversations about MAID, despite having a stake in the way the current policy is written. This means we do not know what their hopes are related to this topic/policy, despite children having a right to be engaged in conversations that impact their lives. It is also important for the Canadian public to know that there’s still a lot we do not know, and we must engage with young people and acknowledge that they are citizens with rights too.

If these kinds of conversations do reveal a shared interest in MAID for mature minors, there is still not a single policy option for how MAID legislation should be amended. We see this in differences between the Netherland’s current policy on assisted dying for children, where there is a minimum age criterion of 12 years of age, and in Belgium’s policy on assisted dying for minors, where there is no age criterion. Eligibility could also involve extra restrictions for mature minors, such as restrictions on the types of illnesses that would be eligible. It becomes very important for decision-makers to consider all the options regarding legalization and to consider the specific safeguards that are necessary and beneficial to put in place, while simultaneously weighing the rights and interests of young people. As others have said over years of debate and dialogue on this topic, there are several reasons that we ought to try to ensure extra protections are in place for young people seeking to access MAID, but we must also remember that they have rights and voices too. It’s a complex task!

It has been said that a mature minor accessing MAID would be a rare occurrence. Could you share an example of when a mature minor might want to access MAID?

This is true! In the Netherlands assisted dying for children has been legal since the original legislation was implemented in 2002; data from between 2002 and 2015 has indicated that seven children had an assisted death in the Netherlands. In Belgium, assisted dying for children has been legal since 2014, and data from between 2016 and 2017 showed that a total of three children received medical assistance in dying. These data indicate that there is likely a small number of young people that would be accessing this form of end-of-life care in Canada—but that number still represents real individuals with interests and needs.

Mature minors who might be seeking to access MAID in Canada would likely be very similar to the adults who seek to access MAID: individuals with a grievous and irremediable medical condition who are facing significant physical/mental suffering. Among the adults who have accessed MAID in Canada since 2016 there has been a variety of underlying conditions, though cancer was most common, so this may be reflective of mature minors who would be interested too. That said, there is not much data on the families or mature minors who have inquired about MAID at this point, so there is still a lot that is unknown.

Overall, a mature minor who might want to access MAID would likely be one who has been engaged in their health care over a sustained period, who expresses a deep understanding of the consequences of their decisions, who faces a condition that is irreversibly progressing, and who has spiritual, physical, psychological, and/or existential interests in contributing to a decision about their death and/or accessing an assisted death at the end of their life. Like all individuals accessing MAID, these decisions would not be easy, so it would be reasonable to presume that mature minors making these decisions would have a close social circle who were able to provide the person with support in making this important decision.

What medical decisions can a mature minor make today?

It is important to note that ‘mature minor’ is a spectrum rather than a binary. This means that while some mature minors are legally capable of making decisions about end-of-life care, others are ‘only’ able to make decisions about when to take a medication or whether to receive a vaccine. It also means that the assessment (whether formal or informal) of the young person’s capacity must be continuous, as the mature minor ‘status’ may not be constant across decisions and time.

Based on the A.C. v Manitoba decision, mature minors can (in some cases) be legally capable of making end-of-life decisions (such as withdrawing life-sustaining treatment), but—again—this is dependent on the capacity of the young person to understand their decision and their ability to provide consent.

Do you think through the parliamentary review that a balanced approach to access to MAID for mature minors can be achieved? What would that look like?

This is a great question and one that is driving my own doctoral research, in which I am investigating whether Canada should move forward with policy development and/or reform related to MAID for mature minors and, if so, what should this reform look like. I think it is important to be cautious to make claims about what a robust and balanced parliamentary review process must look like, as we really do have a large knowledge gap about how young people in Canada feel and think about MAID. We must take a step back and ask what it means/requires to utilize a balanced approach that is reflective of the thoughts of all Canadians and to consider why including young people in these conversations is so vital to the MAID legislation and the parliamentary review itself.

Advocate for mature minors and MAID

Are the issues related to the Parliamentary Review, including mature minors and MAID in Canada, important to you?

Do you want to help protect the constitutional right to medical assistance in dying?

We have created an Advocacy Toolkit and Action Guide that provides you with the resources you need to effectively engage your Member of Parliament.