MAID and minors in Canada

In February 2015, the Supreme Court of Canada issued a unanimous decision decriminalising MAID across the country. In the case of Carter v Canada, the court determined that capable adults who clearly consent to the termination of life and are suffering intolerably from a ‘grievous and irremediable’ medical condition (including an illness, disease or disability) should be able to gain medical assistance in ending their life. While the Carter decision specified that MAID should be available only to ‘capable adults’, the term ‘adult’ was not defined in the ruling, and a vigorous debate quickly emerged regarding whether the term should be interpreted in a way that would allow capable young people to access MAID.ⁱⁱⁱ In response to these concerns, parliament directed the issue of extending MAID access to capable minors to an independent research group—the Canadian Council of Academies (CCA)—for a 2-year period of research and exploration.^iv Results from the CCA working group are due back to Parliament by the end of 2018, at which time the age restriction for capable young people will be reconsidered. For the time being, MAID access is limited to patients who are 18 years and older. It is within this emergent, controversial and rapidly evolving landscape that our group was charged with developing a policy for managing MAID requests at our paediatric research institution.

Policy development

Given current federal legislation on MAID, at this moment our drafted hospital policy applies exclusively to patients who are 18 years or older—a small but important subsection of the patient population at The Hospital for Sick Children. As a paediatric hospital, it would of course be possible to refer patients aged 18 years who request MAID into an adult care setting. However, our working group felt that it would be antithetical to our philosophy of care to transfer patients—most of whom have long-standing relationships with our hospital—into a new and unfamiliar care setting for a procedure that could be safely and effectively performed at this institution. For this reason, and with an eye to a future when MAID may well become accessible to capable minors, the hospital undertook the process of developing a policy for managing MAID in our paediatric setting.

The policy is being developed by a working group, co-chaired by the director of the Department of Bioethics and the medical director of Palliative Care and is composed of experts from nursing, pharmacy, psychiatry, quality and risk management, oncology, intensive care, paediatric rehabilitation and public affairs. Feedback is being solicited from external and internal stakeholders as well as from the Family-Centred Care Advisory Committee—a group of family members of current and former patients who volunteer to advise the hospital on matters related to patient care. In selecting this working group and guiding its process, we looked to Eva Winkler’s work on the ethics of policy writing on controversial social issues, both to guide group composition (p. 563)1 and in our efforts to make the rationale for the policy publicly available (p. 565).1 We write this article documenting our in-progress thinking in an effort to make our aims and deliberative process clear, and to invite discussion of the ethical issues that were surfaced during the policy creation process.

The nature of MAID

The central theoretical question that emerged during the process of policy creation was whether MAID should be conceptualised as a medical intervention like others that result in the end of life (eg, palliative sedation and withdrawing or withholding life-sustaining interventions),^v or whether MAID is practically and ethically distinct from these practices. Different ways of answering this question lead to very different ethical obligations at the level of practice. Indeed, it was in attempting to nail down practical questions about patient communication, confidentiality and capacity assessment that these conflicting theorisations of MAID became legible to our group.

We begin by outlining two competing conceptualisations of MAID. The first is the view that MAID is meaningfully distinct from other medical practices that result in the end of life. We begin here because this position is standard in the literature on MAID and is foundational to nearly all assisted dying policies and guides we have encountered. We then outline the opposing view: that MAID should be understood as practically and ethically equivalent to other medical practices that result in the end of life. We explore the entailments of each conceptualisation at the level of practice, and describe our group’s attempts to find ground between these competing theorisations.

Practical entailments

These different ways of understanding the nature of MAID lead to very different entailments and obligations at the level of practice. Indeed, our working group came to appreciate the importance of this conceptual distinction only as we attempted to pin down practical questions about patient communication, confidentiality and capacity assessment. When MAID is constructed as practically and ethically distinct from other medical practices that result in the end of life, it follows that it is appropriate to develop special procedures for managing communication, confidentiality and capacity assessment in MAID cases. When MAID is constructed as practically and ethically equivalent to other medical practices that result in the end of life, it follows that the same procedures surrounding confidentiality, communication and capacity assessment should apply in MAID cases. This may sound straightforward—our working group should simply pick a side and stick to it—but this became difficult to maintain in practice, as we found that national laws, standards of professional practice, the Supreme Court’s decision and our group’s own ethical intuitions about the nature of MAID all seemed to waver and equivocate as different dimensions of the practice were considered. Three examples will serve to illuminate this challenge.

The first example has to do with patient communication. Specifically, our working group wondered: who should initiate conversations about MAID? The patient? The healthcare provider? How, when and in whose presence, should these conversations take place? These questions apply in adult care settings as well, but they take on a different quality when they are considered in a paediatric setting in which the dominant discursive frame is ‘Child and Family-Centred Care’10—a model that requires balancing respect for the autonomous decision-making of capable young people with an acknowledgement of their deep relational embeddedness within family systems (p. 6).11,^vii In such a paediatric setting, how should conversations about MAID proceed?

Scholarly and applied literatures are united in their presumption that conversations about MAID will begin with a patient request.^viii This is diametrically opposed to the way virtually all other medical communication is structured, in which the onus is on healthcare providers to inform patients of the full range of medical options that are available to treat a particular condition. The positive ethical and legal obligation for clinicians to inform patients is important because it is a foundational building block of informed consent and autonomous decision-making.^ix In order for patients to make autonomous choices about their medical care, they must know the full range of options that are available to them. Healthcare providers are expected to be the medical experts, not patients.

This question of communication is the focus of a recent article by medical anthropologist Mara Buchbinder, who argues compellingly that a prima facie case may hold for physicians to inform their patients about the existence of MAID.12,^x Buchbinder points out that public knowledge may lag behind legislative developments and, therefore, some patients may not know enough about assistance in dying to request it (p. 2).12,^xi She adds that the people who are most likely to be uninformed about the existence of MAID are those who are already socially marginalised in other ways (linguistically, educationally, etc), and that this may potentially lead to an untenable situation in which patients who are already socially vulnerable receive a different range of care options at the end of life than those who are otherwise socially located (p. 3).12 A positive obligation on clinicians to discuss MAID with their patients is a mechanism that levels the playing field, ensuring that all capable patients have access to information that will allow them to make autonomous medical decisions about how their life will end. Our working group was deeply influenced by Buchbinder’s arguments and came to feel uneasy with the seemingly universal practice of relying exclusively on patients to initiate requests for MAID.

The second set of questions that illuminated this conceptual confusion about the nature of MAID had to do with the process of determining capacity. More specifically our working group asked: how should capacity to consent be assessed in MAID cases? Again, this is a question that also applies to the practice of MAID in adult populations, but it takes on a special urgency in a paediatric setting, where young people’s capacity to contribute to medical decision-making remains controversial in some contexts.^xii The Hospital for Sick Children is located in Ontario, a province that does not rely on age as a heuristic for capacity (ie, there is no ‘age of consent’ for medical treatment), but rather operates on the presumption of capacity for all patients regardless of their age (HCCA, section 4 (2)).13 This means that young people can be and are found capable of making their own medical decisions, even when those decisions may result in their death.^xiii The question facing our working group, then, was: should the same procedures and protections that govern capacity assessment for other medical practices that result in the end of life also apply to MAID?

The Supreme Court’s Carter decision indicates that the same procedures that apply to capacity assessment in other cases should also apply to MAID. They write: ’vulnerability can be assessed on an individual basis, using the procedures that physicians apply in their assessment of informed consent and decisional capacity in the context of medical decisions more generally’ (par. 115).9 This guided our working group towards recommending the maintenance of consistent standards of capacity assessment and an underlying theorisation of MAID as practically and ethically equivalent to other medical interventions that result in the end of life.

However, clinical guides to MAID in Ontario contradict this mandate in several ways. First, as noted previously, current federal legislation restricts MAID access to persons who are over the age of 18 contra to provincial legislation that does not use age as a heuristic for capacity. Second, patients in Ontario who are found to be incapable of making their own medical decisions are usually permitted to appeal this finding to an independent body of medical and legal experts—the Consent and Capacity Board—who have the ability to make legally binding capacity determinations (section 32).13 However the Consent and Capacity Board has pre-emptively declared that they will not hear MAID cases.14 This means that, at present if a patient is found to be ineligible for MAID on the basis of incapacity, the patient does not have the usual recourse to appeal this decision as is guaranteed by provincial legislation.

Again, our working group found ourselves in a bind. The Supreme Court of Canada’s Carter decision seems to point us towards assessing capacity for MAID in the same way we would for other medical treatment decisions, thus supporting an underlying conceptualisation of MAID as ethically equivalent to other medical practices that result in the end of life. However, federal legislation restricting MAID access to patients who are aged over 18 years and current professional practice of the Consent and Capacity Board points towards treating MAID as exceptional.

A final example illustrating conceptual confusion about the nature of MAID is related to patient confidentiality. Specifically, our working group wondered about a hypothetical scenario: how should healthcare providers respond if a capable patient requests MAID,^xiv but their parents clearly oppose this request? Are there situations in which MAID requests and administration would be kept secret from parents and other family members, for example, if a capable patient were to indicate that they do not want family members involved? Again, these questions are relevant to the adult care setting, but they are excruciatingly delicate when considered in paediatric care.

We found no literature or guides to practice on this particular issue, and so we looked to other circumstances in which capable young people make medical decisions that result in the end of their life. As discussed previously, Ontario is a jurisdiction in which capable young people can and do make the decision to refuse or discontinue life-sustaining treatment. It is our institution’s practice to discuss these decisions with the capable patient themselves, and to involve family members to the extent requested by the capable patient. Usually, the family is intimately involved in this decision-making process. If, however, a capable patient explicitly indicates that they do not want their family members involved in their decision-making, although healthcare providers may encourage the patient to reconsider and involve their family, ultimately the wishes of capable patients with respect to confidentiality must be respected. If we regard MAID as practically and ethically equivalent to other medical decisions that result in the end of life, then confidentiality regarding MAID should be managed in this same way.

This conclusion set our working group distinctly on edge. Would we really allow a capable patient receiving care in our paediatric hospital to receive MAID without the knowledge or consent of their parents? In other circumstances in which capable young people make medical decisions that result in the end of life, the answer is ‘yes’, although, again, clinicians would strongly encourage the patient to discuss this decision with their family. Is MAID meaningfully different from these practices? Is it sufficiently different to justify violating existing confidentiality standards? Again our working group found itself uncertain about the nature of MAID with legal, professional and scholarly sources all pointing in different directions or remaining silent.

Our policy and the search for middle ground

Our drafted policy seeks a middle ground between these competing theorisations—treating MAID in a manner that is consistent with other medical interventions that result in the end of life, while still acknowledging that MAID may be experienced as distinct by some patients and clinicians. The centrepiece of our current drafted policy is a flow chart, which is intended to guide clinical management of MAID cases (figures 1-3).

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Figure 1

Flow chart draft of phase I medical assistance in dying. CCB, Consent and Capacity Board; HCP, heath care provider; MAID, medical assistance in dying; PACT, Paediatric Advanced Care Team.

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Figure 2

Flow chart draft of phase II and III medical assistance in dying. CCB, Consent and Capacity Board; MAID, medical assistance in dying; MRP, most responsible physician; PACT, Paediatric Advanced Care Team.

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Figure 3

Flow chart draft of phase IV medical assistance in dying. MAID, Medical Assistance in Dying.

Regarding issues of communication, we suggest that MAID will be initiated by the patient, although we note that patient initiation can take multiple forms including an explicit request for MAID, an explicit request for information about MAID or an expression of suffering and a request for help ending life. This request does not need to be made directly to the MRP, but rather can be made to any healthcare provider, in order to account for situations in which a patient may feel particularly close to a different member of their healthcare team.

We hope that this more nuanced position regarding what constitutes patient initiation may allow healthcare providers to engage conversations about MAID in a wider variety of circumstances; however, we stop short of asserting a positive obligation to inform patients about MAID. Although our working group found Buchbinder’s arguments regarding informed consent and the importance of ensuring equitable access to information about MAID extremely persuasive, we were also simultaneously keenly attuned to the discomfort expressed by members of our group at the idea of a prima facie obligation to routinely initiate conversations about MAID. Clinicians in our working group were concerned that the mere suggestion that clinicians may initiate conversations about MAID would be alienating to their coworkers who may (a) object to MAID on ideological or moral grounds, (b) feel unsure or uncomfortable about how to initiate these conversations or (c) resent this incursion into their practice. Continued discussions across hospital roles signalled that departing from this aspect of adult policy on MAID was not welcome at a time when the idea of providing MAID in a paediatric setting is already controversial. In light of these concerns, our drafted policy makes discussing MAID permissible when patients express suffering and request information about ending their life, but stops short of a prima facie obligation to inform patients about the existence of MAID.^xv We plan to revisit this issue in future iterations of the policy when some of the contemporary social controversy and uncertainty around the practice of MAID has become more settled.

In all other regards, our working group has, at present, elected to conceptualise MAID as practically and ethically equivalent to other medical practices that result in the end of life. This theorisation of MAID is justified on the grounds that these practices share a common purpose of alleviating unendurable suffering and facilitate the patient dying on their own terms. We feel that this theorisation is consistent with the Supreme Court of Canada’s Carter decision, and is reflective of our concern that the conceptualisation of MAID should not place additional burdens on the patient or function to limit the rights and freedoms to which patients are typically entitled. In this regard, we note in box 12b that patients who are found ineligible for MAID on the basis of incapacity have a right to appeal the finding of incapacity to the Consent and Capacity Board. As a matter of hospital policy, then, our usual practices concerning communication, confidentiality and capacity assessment will also apply to MAID cases.

In the final section, we briefly consider the institutional challenges that arise in constructing polices concerning what is still an extremely controversial social practice. We argue that a rare opportunity may exist for MAID-providing institutions to reduce social stigma, but not without potentially serious consequences for healthcare providers and MAID-providing institutions themselves.

Messaging MAID

In addition to questions related to patient care, our working group considered the question of how the hospital would approach MAID as a matter of public relations. Should institutional conversations about MAID happen behind closed doors with an undisclosed list of participants or should conversations about MAID happen in the public sphere? Should the policy be accessible only by personnel at The Hospital for Sick Children or should the policy be made available to other institutions and members of the public? These questions are weighty, owing to the socially controversial nature of MAID and the potential for sensational media coverage. Two models were considered to guide us through this public relations challenge.

First, there is the ‘abortion model’. When restrictions on abortion were declared unconstitutional in Canada,15 physicians who provided abortions and independent abortion-providing clinics were the target of violent attacks.16 Hospitals that provide abortions (particularly late term abortions) still do not advertise the fact, instituting aggressive secrecy policies at a personal and institutional level. In her research on the effects of these regimes of silence on abortion workers, social worker Cherilyn van Berkel argues that this has negative consequences both for hospital workers (p. 7)17 and for the public (p. 11).17 If we take the abortion model as our strategy for publicly messaging MAID, we would proceed with great caution and secrecy in an effort to protect MAID providers and to avoid social controversy about this practice.

An alternative model for messaging MAID are the institutional responses to the HIV/AIDS epidemic. When the AIDS crisis hit in the 1980s, hospitals participated in destigmatising the disease by discussing it openly in the public sphere (pp. 5–7).18 There is now a large body of research on the role of hospitals in reducing HIV stigma, which recommends institutional transparency and explicit conversations about the causes of HIV/AIDS.18–20 In other words, healthcare institutions sought to leverage their social capital and prestige on behalf of their patients who are vulnerable to social marginalisation. If we take the HIV model as our strategy for publicly messaging MAID, we would proceed by providing MAID in a matter-of-fact way that may, over time, reduce the social burden both on patients seeking this procedure and clinicians providing it.

As may be obvious, based on our decision to write such a public article about this process, our working group has decided to cautiously follow the ‘HIV model’ and move carefully into discussing MAID in the public sphere. In this, we follow the lead of our international colleagues who have also chosen to write publicly about MAID implementation in their healthcare settings.21 22 In order to protect staff members from potential violence and social harassment, we will not make public the names of the healthcare providers at The Hospital for Sick Children who have volunteered to provide MAID, nor will we disclose a full list of persons who comprised our working group. We will, however, as an institution, publicly discuss the provision of MAID in an effort to normalise this procedure and reduce social stigma for everyone involved. It is right and appropriate for this duty to fall to a well-resourced institution rather than rest on the shoulders of individual patients and providers. We hope that by facilitating frank and sincere conversations about paediatric MAID while still maintaining protections for MAID providers, we will protect those who are most socially vulnerable.