Re-examining medical assistance in dying for mature minors in Canada: Reflections for health leaders

Abstract

In Canada, Medical Assistance in Dying (MAiD) is legal for many Canadians based on several criteria, though minors who are deemed sufficiently capable to make medical decisions (i.e. mature minors) remain ineligible. In this article, we provide insight into recent philosophical and legal evidence related to MAiD for mature minors. We begin by providing an overview of literature pertaining to MAiD for mature minors in particular (including evidence from Belgium and the Netherlands), followed by a discussion on the lessons that can be learnt from Canada’s MAiD implementation process (in general) and other forms of paediatric end-of-life care. As a whole, we aim to highlight some key takeaway messages for health leaders to consider as deliberations on MAiD for mature minors continue.

Introduction

To access Medical Assistance in Dying (MAiD) in Canada, an individual must meet several criteria, one of which requires the person to be 18 years of age or older. ¹ However, depending on provincial/territorial legislations related to consent and capacity, mature minors are otherwise legally entitled to make their own medical decisions, including those that will result in their death (such as withdrawing treatment). This tension was acknowledged during the drafting of Bill C-14, which called for an independent review of MAiD for mature minors, along with cases where a clinical mental health condition is the sole underlying condition and cases involving an advanced request. ¹ To help prepare health leaders for potential legislative changes following this review, this brief provides an overview of the recent philosophical and legal evidence regarding MAiD for mature minors, including insights from international jurisdictions where MAiD is permitted for this population.

“Mature minors”

The term mature minor is a legal construct referring to persons under the age of 18 who are sufficiently mature to “understand information relevant to a treatment decision and to appreciate the reasonably foreseeable consequences of a decision or lack of decision.” ^{2 ,3} The mature minor status can either be formally conferred through a legal process or can be informally granted by a healthcare practitioner, and the specific process and definitions depend on the provincial/territorial statute. ³ For instance, in Ontario, essentially no consideration is given to age, with the ability to consent to medical treatment based entirely on capacity and competence. In Quebec, on the other hand, minors may generally consent to medical treatment at the age of 14, though exceptions will be made depending on the risk associated with care or the length of a hospital stay.^4,5 Practically speaking, this means that minors under 14 cannot provide their own consent in Quebec. ⁵ Moreover, the designation of “mature minor” can vary from one time point to another and from one decision to another—meaning it is context and content dependent.

Current state of the evidence on MAiD for mature minors

For Canadian adults, MAiD has been legal since 2016. In the years since legalization, several articles have been written exploring MAiD from philosophical, legal, and clinical perspectives. In what follows, recent literature will be highlighted to provide a current pulse on evidence related to MAiD for mature minors.

Evidence from Canada

A 2018 report by the Council of Canadian Academies (CCA) on MAiD for mature minors highlighted several knowledge gaps pertaining to death and dying in childhood. ⁶ These included the missing voices of young Canadians and their families, especially those with disabilities, Indigenous youth, those in the child welfare system, and those who face other forms of systemic discrimination and disadvantages. ⁶ In addition, very few clinical studies have explored how the quality of end-of-life care, and other health issues tied to the end-of-life care, is experienced by children. ⁶ Patton and Dobson completed a review of recent evidence related to MAiD for mature minors in 2021, ⁷ which confirmed that there remains a lack of primary data collection on this topic.

The lack of Canadian evidence on MAiD for mature minors has had several policy consequences, such as being cited as a key factor in the decision of the Canadian Psychological Association’s Task Force for End of Life Care not to recommend whether mature minors should have access to MAiD. ⁷ This position has been criticized by Patton and Dobson, who argue that utilizing age as a criterion for competency undermines both the need to respect dignity of mature minors as well as the significance of responsible caring outlined in the Canadian Code of Ethics for Psychologists. ⁷ They further argue that there is a need to balance the ethical concerns related to the vulnerability of children and their ability to determine what is in their best interests with allowing people to die with dignity and make choices. ⁷

Similarly, legal arguments have been made that the exclusion of mature minors from the MAiD legislation is an “act of age discrimination,” whereby it exposes mature minors to unjustifiable suffering and inaccurately positions them as incapable. ⁸ Accordingly, mature minors may be able to make a case that their rights to “life, liberty, and security of the person” (Section 7 of the Canadian Charter of Rights and Freedoms) and to equality without discrimination based on age (Section 15) have been violated by their ineligibility to access MAiD. ⁸ These considerations may help provide some legal rationale for extending the MAiD legislation to mature minors.

Evidence from international jurisdictions

Canadian evidence is primarily limited to philosophical and legal argumentation, but evidence from the Netherlands and Belgium, where MAiD (otherwise referred to as euthanasia) is permitted for some minors, has begun to accumulate. Despite being legal, MAiD for minors is infrequent both in the Netherlands and Belgium. In Belgium, the most recent evidence indicates that there were only three cases between 2016 and 2018. ⁹ In the Netherlands, only 16 cases of MAiD for minors were reported between 2002 and 2020. ¹⁰ The most common rationale behind requests for MAiD by mature minors in these jurisdictions was “intolerable suffering leading to hopeless care situations.” ¹¹ While the small number of cases in these countries should provide reassurance for those in Canada who worry that legalizing MAiD might “open the floodgates” of mature minors seeking MAiD, it does not suggest that legalizing MAiD for this population is not important—these were still people who suffered and who felt that MAiD was the appropriate choice. Another observation is that these jurisdictions have each taken a different approach to how they determine whether a minor is eligible for MAiD. In Belgium, there is no age outlined in the legislation; instead, “capacity for discernment” is used as a criterion to determine who is eligible. ¹² However, in the Netherlands, age is currently used as a key tool in conceptualizing capacity, with Dutch legislation setting 12 as the lower age limit within which children can make decisions pertaining to MAiD ¹³ (though many Dutch clinicians have opposed the age criterion and support removing it from the legislation). ¹⁴

Learning from Canada’s MAiD implementation process

Practically speaking, in Canada the implementation of federal MAiD legislation and procedures falls under provincial/territorial regulation and a degree of discretion has been left to providers. This type of bottom-up model of policy implementation has been referred to as “street-level bureaucracy,” wherein frontline staff become important actors for implementing a policy and the government takes on a “principal” role.^15-17 For example, MAiD assessment forms are developed provincially/territorially (based on context-relevant factors), completed by two providers, forwarded to provincial/territorial and federal Ministers of Health, and the forms allow providers to leave comments for improving achievement of policy. These assessment forms define a process that places boundaries on physician discretion, while allowing for physicians to use their clinical judgement when assessing factors like whether an adult patient is competent/capable to make medical decisions.

When considering the extension of MAiD to mature minors, questions emerge around whether additional safeguards are needed in light of the “protection” that often enshrines paediatric patients and care and, if so, what those ought to look like or include. Questions also emerge around who—the clinician, the parent/caregiver, or the mature minor themselves—should be the one to initiate requests for MAiD. ¹⁸ While these questions will engender much debate, it is likely that the bottom-up model of implementing MAiD will remain, and so clinicians and healthcare delivery organizations will be responsible not just for providing MAiD but also for developing the associated policies and procedures.

Learning from other end-of-life care for mature minors

Although provincial/territorial law lays out guidelines for medical decision-making for mature minors, there are a number philosophical, cultural, and structural factors that can serve to shape what kinds of decisions they can make in practice.

One factor that may shape what kinds of options are available to mature minors is a common assumption, held by parents, practitioners, and society-at-large, that there is a clear threshold grounded in childhood development for every type of decision (eg medication usage, invasive procedures, non-invasive procedures, advanced planning, and end-of-life), which can be traced back to a Piaget ¹⁹ and Erickson ²⁰ stage-based model of development. In these theories, which became enshrined as the dominant 20^th century developmental canon, children cognitively develop and build capacities in stages that progress linearly. However, more current approaches and important critiques to examining young people’s capacities tend to focus on individuals’ social and environmental contexts, the particular decision at hand, and the experiences that have informed what they are able to understand, appreciate, and form interests around. ³ On the whole, the dominant conceptions of children articulated by Piaget and Erikson present a binary related to decisional capacity and incapacity ²¹ that can undermine approaches focused on the individual minor (or mature minor) and their capacities in the “here and now.”

The norms of paediatric care in Canada also create distinct contexts that shape the kinds of decisions that all mature minors can make. Underpinned by the discourse of childism, silence often accompanies news of poor or fatal paediatric prognoses—this includes both silence towards young people and silence from young people.^22,23 As illustrated in our schematic diagram, that is, Figure 1, this engrained childism contributes towards a culture of silence around MAiD in mature minors. In addition, there is a tendency to prioritize beneficence over patient autonomy in paediatric care, ²⁴ along with a lack of recognizing minors’ agency, which has contributed to a paucity of information on paediatric advanced care planning. Likewise, the focus of paediatric treatment tends to be curative rather than palliative, despite the immense value of implementing end-of-life care and supports soon after diagnosis of a life-limiting illness. ²⁴ All of these factors contribute to an environment that may effectively narrow the choices of mature minors and prevent engagement with end-of-life decisions.

Figure 1.

The cycle and culture of silence in MAiD for minors with underlying illnesses.

Structural and social factors within the Canadian healthcare system can also shape the options available for mature minors at the end-of-life. One option for paediatric patients facing an impending death would be palliative care aimed at managing symptoms and pain, which can be required for more than a year for many patients. ²⁵ However, only 13 paediatric palliative care programs existed in Canada as of 2012, and data indicated that just 18.6% of children across the country who could benefit from palliative care actually received this care. ²⁶ While some of this gap is certainly related to Canada’s disperse geography, some is also driven by structural racism that impacts children and families in paediatric contexts.^27-29 Racialized children and youth with chronic illnesses and disabilities may navigate dual oppressions in healthcare spaces, such as racism and ableism. ³⁰ These discriminatory forces play a significant role in dictating the options offered to or available for a racialized minor at the end-of-life.^27,28 Overall, conversations about and provision of paediatric end-of-life care must attend to the engrained discrimination experienced by racialized and other equity-deserving groups. It is likely that without intentional efforts to address these philosophical, cultural, and structural factors in paediatric care, they might serve to limit access to MAiD, even in the event it was to be made legal for mature minors.

Engaging mature minors in evidence and policy development

Finally, mature minors were not actively engaged in the development of Bill C-14 or since legalization, despite several opportunities for public input from adults. The historical trajectory of, and since, this decision is traced in Figure 2. This exclusion not only ignored mature minors' rights to participate, thereby breaching Article 12 in the United Nations Convention on the Rights of the Child, ³¹ but also contributed to a context in which beliefs about children’s supposed limited capacities have been able to dominate. However, there are established models through which minors’ views can be elicited and interpreted and through which the inherent relational nature of their capacities ²¹ can bolstered by the approaches used. One such model are the child and youth advisory councils that have been established at many Canadian paediatric hospitals. These councils often provide feedback for staff, administrators, researchers, families, and patients at a hospital but can also be engaged in evidence and policy development. For example, the Youth Advisory Council at the Holland Bloorview Kids Rehabilitation Hospital was engaged to contribute to the CCA report on MAiD for mature minors. ⁶

Figure 2.

Highlighting key time points for eliciting public opinion related to MAiD in Canada.

Lessons for health leaders and key takeaways

Many knowledge gaps remain with respect to MAiD for mature minors, including empirical research with children, their families, and their providers. In addition to supporting scholars to fill these gaps and advance perspectives on MAiD for mature minors, health leaders may need to consider what the potential extension of MAiD to mature minors may mean for their organizations.

One important consideration will be the type of supports that will need to be introduced in paediatric centres. Even though relatively few patients are likely to access MAiD, policies and procedures will need to be developed to ensure that MAiD can be provided fairly and safely. Likewise, personnel and technological resources will need to be mobilized in a way that does not burden patients, families, or advanced care teams and for other forms of end-of-life care (palliative care, in particular), while allowing mature minors to maintain choice and agency in these decisions.

Recognizing and responding to systemic and structural racism and other forms of discrimination in paediatric end-of-life care must be at the top of mind if MAiD for mature minors is legalized. This may involve cultural safety and anti-racist training that pertains to end-of-life care, including MAiD. For instance, “death doulas” working in adult settings can have specific training related to MAiD and cultural sensitivity, and this could be integrated into paediatric settings too. Focuses on diversity, equity, inclusion, and belonging in healthcare highlight the importance of prioritizing these principles for all populations, particularly those who face discrimination and marginalization, and in all forms of care. As such, these principles and intersectional approaches must be considered and utilized when developing policies related to MAiD and initiatives to engage populations as stakeholders and knowledge experts (including, but not limited to, mature minors).

One of the key takeaways from this review is that the cultural norms of paediatric care can serve to limit the choices mature minors can make at the end of life. Leaders must therefore reflect on how their own interpretations of children and youth’s capacities influence the ways in which services are provided to children in their organizations. The mature minor—the minor with various capacities—has legal rights to participate in deliberations, and as a result, processes need to be adapted and prioritized by health leaders to ensure these voices are included and heard, in ways that appreciate the relational nature of the way minors navigate the world. This requires working with minors to consider them as partners, as well as advocating for their inclusion in matters that directly affect their lives—in federal and provincial/territorial policy deliberations and in institutional planning related to MAiD for mature minors. As astutely articulated by another scholar, “developing a participatory ecosystem [in health policy spheres] therefore requires a process of reconceptualizing children: of critically identifying and bracketing adult-centric assumptions towards thinking from children's perspectives, and then interpreting and translating children's perspectives into thoughtful policy.” ³² Considering the wide exclusion of young people from MAiD policy, the current context offers health leaders and scholars an excellent opportunity to create the ecosystem they hope to advance for the future.

ORCID iD

Sydney Campbell https://orcid.org/0000-0002-5775-954X