Thoughts on Advanced Directives for Assisted Dying

The enactment of Canada’s medically assisted dying legislation in June 2017 left three areas in particular outstanding: whether mature minors could seek a medically assisted death, whether medically assisted death would be available when the reason for seeking it is mental illness and whether an individual could provide for an advance directive for a medically assisted death when they were no longer able to consent.

Here I make some remarks about advance directives, using the report from the Council of Canadian Academies (CCA), which had been given the responsibility by the government to gather information about the three issues (the legislation itself provided for independent reviews in each of the areas). The CCA released its full — and extensive — report towards the end of last year. I rely on the report of the Working Group on advance requests as a base for my comments, but do not summarize or address all the issues included in the report.

The preamble to the legislation summarizes the balance it seeks to achieve:

…permitting access to medical assistance in dying for competent adults whose deaths are reasonably foreseeable strikes the most appropriate balance between the autonomy of persons who seek medical assistance in dying, on one hand, and the interests of vulnerable persons in need of protection and those of society, on the other….

The most relevant legislative requirement resulting in the omission of advance requests is found in clause 241.2(3)(h) that the medical practitioner who will provide the assistance “immediately before providing the medical assist­ance in dying, give[s] the person an opportunity to withdraw their request and ensure that the person gives express consent to receive medical assistance in dying” (emphasis added). Thus individuals who may appear to meet the requirements otherwise (even that of foreseeability, depending on how that might be defined) are unable to delay the medical assistance to a time of their choosing before they lose their capacity to consent. Doctors and others assisting with providing a medical assisted death will be criminally liable if they act on an advanced directive rather than on an individual’s immediate consent.

For all the issues it addressed, the panel drew on a wide range of sources, to the extent possible considered the impact of the issue on diverse populations and considered the issues from the perspective of a variety of disciplines, but acknowledge that there remain gaps in the “state of the knowledge” they can provide. For example, although they benefited from and Elders Circle and otherwise acquired Indigenous knowledge, they believe there remains a “significant” knowledge gap in this respect. Efforts to learn from other jurisdictions with more experience than Canada was, of course, limited by the small number of jurisdictions that allow medical assistance in dying. The Expert Panel was not expected to make recommendations: thus the title “State of Knowledge on Advance Directives”. While it is helpful to have a compilation of current knowledge based on a combination of sources and disciplines, the hard part is yet to come: should the legislation permit advance directives and if so, what safeguards, if any, need to be developed to ensure that it is not abused. As the Expert Panel says,

Allowing or prohibiting ARs [advance requests] for MAID [medical assistance in dying] requires policy makers to take a position on the interplay among the concepts of autonomy (individual and relational), suffering (and the intolerability of suffering), and vulnerability (inherent and situational) created by a loss of decision-making capacity. (p.34)

The report places advanced directives for MAID in the context of two developments in health care: patient-centred care that emphasizes the right of the patient to make decisions about their health care, within certain boundaries, and advance planning in relation to their care, including the naming of a substitute decision-maker (or analogous person). (The report considers substitute and supported/co-decision-making at pp.45-47; also see The Law Commission of Ontario’s report on Legal Capacity, Decision-making and Guardianship at 68-75.) The report makes a distinction between advance directives related to cessation of care or a refusal to accept treatment and an advance directive (advance request, as used in the report), which is an “intervention” into the life of an individual without immediate consent (p.38). However, one might also argue (I suggest) that the emphasis should be on the right of the individual to integrity over their body and life: this is illustrated by the difference between starving to death and a procedure that will ease death without pain (or any pain additional to that already experienced as a result of the individual’s situation), a choice an individual made when capable of considering the difference between these options (that is, any form of cessation of treatment or nourishment). How the issue is framed is therefore crucial.

The report refers to the report of the provincial-territorial working group formed following the Carter decision, which concluded that advance directives for MAID be permitted by individuals who had a “grievous and irremediable” decision, since they might otherwise be driven to suicide before they lost the capacity to consent (p.41). Another group, the parliamentary Special Joint Committee on Physician-Assisted Dying, naming their report “A Patient-Centred Approach”, also recommended advance directives for MAID (p.41).

It is worth noting, however, that advocacy groups’ positions, which the report refers to briefly on p.42) on advance directives for MAID may reflect the experience and “interests” (by which I mean what matters to them) of their constituents. For example, a group representing persons with disabilities might be concerned that it is the lack of supports for persons with disabilities that could result in individuals making an advance directive (this fear is equally true of requests for assisted death under the current legislation). This raises fundamental questions about the adequacy of palliative care options in Canada, applicable to many people facing significant illness. End-of-life care must be seen as part of the continuum of assisted death.

One of the concerns the report expressed that, in my view needs to be addressed, is to ensure that advance requests for assisted dying do not meld into advance directives for care generally (p.48). This requires that advance directives for assisted dying must be made separately from other or more general substitute care directives. Although I have suggested above that advance directives for medical assistance in dying and advance directives for (for example) cessation of treatment or nourishment may be equated, it is important that a substitute decision-maker’s authority be limited by the earlier-expressed wishes of the individuals in whose behalf the SDM is acting and an SDM must have explicit instructions to provide for medically-assisted death, just as they must have explicit instructions to cease treatment or cease nourishment. Having said that, it is not beyond the realm of consideration that in the right case, it might be easier for the individual to have a medically-assisted death than to suffer through the enhanced deterioration of their illness; whether it is easier, however, is not the test: rather it is what the individual wished for themselves.

The report considers a number of factors that are relevant for advance directives, but are also relevant for requests made under the current legislation (such as suffering or concern about becoming a “burden” for caregivers); this does not mean they are not important, merely that they need to be addressed more broadly even under the current system, and may be related in either case to the voluntariness of the decision to request medical assistance in dying.

The report addresses questions of uncertainty around advance requests in chapter 4, by using specific scenarios that cover ARs made when the individual has been assessed as eligible (but must wait under the legislation before receiving the assistance), ARs made after a diagnosis but before eligibility and ARs made before any diagnosis (which I do not summarize here) and the discussion here is helpful in appreciating the complexities that might arise. There is no denying that there are practical issues related to advance directives for medically assisted dying, just as there might be in advance directives generally. There is also no denying that they raise a heightened concern because we consider death the “ultimate act” and this may be especially true if the request has been made a considerable time before the individual is otherwise eligible for assisted dying (assuming those requirements remain in place). Who can say what changes may occur between the request being made and the timing of eligibility, for example? One way of addressing this may be to require a reaffirmation of the request at certain intervals until it is no longer possible because the person has lost the capacity (but may not have otherwise reached the stage of their condition making them eligible for assisted death). Indeed, it may be that this would be desirable for the “regular” advance directives for care and property.

In considering the practical ramifications of advance directives for MAID, whether they are adopted or not, the Working Group was hampered by the limited availability of any experience in countries already allowing them. It relied on professional expertise, but also empirical studies and “ethical and legal arguments, anecdotal accounts, claims, and opinions”, informed by the current environment surrounding advance directives more generally (p.137). It recognized that the waiting period between determination of eligibility and actual assisted death is often stressful, with individuals fearful something will happen to make them lose their capacity. ARs do recognize individuals’ autonomy; however in some cases, people with dementia may still be able to express their wishes that some would argue are more reflective of their wishes than the previously expressed ones (this issue is one that can arise outside the advance directive for MAID context).

One point raised briefly by the report in this chapter is confusing. The report acknowledges that advance requests may alleviate suffering and permit a “dignified” death, but that some people believe they do not require an assisted death to die with dignity. The report then states, “Thus, the key element for ensuring that all patients die with dignity is not to provide MAID for everyone, but to give people the opportunity to choose MAID if that is what they desire.” (p.139) Nowhere is there a suggestion that everyone should have medically assisted dying (although it is true that one objection is based on the slippery slope argument) and this statement seems out of place, except as a compromise with those worried about the slippery slope. Similarly, the report’s comment that some people believe that allowing ARs would place those who have already lost capacity in the same position as those who have decision-making capacity is difficult to understand, since ARs are premised on individuals having capacity at the time they make them.

On the one hand, advance requests may reduce the stress of those who have already been declared eligible but who worry that they will lose capacity or who refuse pain medication because they are afraid they will lack capacity at the time the assistance is to take place; there have been cases of those who have scheduled the assistance earlier than would otherwise have done for this reason or have taken their own lives without assistance. Advance requests can also allow people to live as fully as possible, despite difficulties, knowing that it will be available when the time comes: ARs gives them a sense of control over their lives.

On the other hand, advance requests can impose a burden on those responsible for determining when the circumstances that have been (preferably) identified in the AR have been met (p.142), whether SDMs, family or medical practitioners. This can equally be true with respect for advance directives for care now, even those not related to end-of-life (as the report mentions, when someone must move to a long-term care home, for example).

The report proposes a number of safeguards that if implemented could reduce some of the concerns of those who support ARs, but still worry that there may be negative ramifications (some people opposed them regardless of possible “safeguards”) including limiting the circumstances in which they could be implemented (such as when the person is irreversibly unconscious, as in Luxembourg and Belgium) (p.150); professional support for the person creating an AR, as well as help for those, such as family, who may have to implement the AR, along with discussion between the person wanting the AR and (for example) family members about the reason(s) for wanting it; registration of ARs; ongoing discussion of the AR (again, as in Luxembourg and Belgium, where they are legally valid only for five years). The report supports a “conscientious objection” option for health care professionals (p.157), an issue that would need discussion.

Just as with advance directives generally, it is unrealistic to assume that abuse of the AR for MAID is not a possibility and it is therefore crucial to ensure that ways of addressing this possibility are in place, including the involvement of third parties (pp.158-159) and oversight provisions (pp.162-163).

Advance requests for medical assistance in dying cannot be divorced from the healthcare system generally. Whatever the efforts to provide “good” end of life care, it is insufficient for many people. Indeed, the fact that people may find themselves over and over again in the hallways of emergency wards, a reality in too many hospitals, or in dreary or worse long-term care homes, can lead to them eventually “choosing” an earlier death than they wish. Now the legislation would not consider them eligible, but no doubt overtime, we will recognize that people have a right to decide the time of their death. This is, in my view, as it should be, but it is a pox on society that it is our healthcare system or our economic system that leads them to want it. The legislation does nothing to respond to them. But for those individuals who have made a choice, the option of an advance request should be available within the current legislation. It is consistent with the framework and purpose of the legislation, even though not currently consistent with specific provisions. The CCA has done a good job in gathering the relevant information, and its report can be recommended for those who want to find out as much about ARs as they can in one place, but it is time to revise the medically assisted dying legislation to permit advance requests, coupled with a system of “safeguards”.

Start the discussion!

Leave a Reply

(Your email address will not be published or distributed)