The Council of Canadian Academies was asked by the Federal Government to report on three areas of MAID legislation: Advance Requests, Mature Minors, and Where a Mental Disorder is the Sole Underlying Medical Condition.
Those reports were tabled on December 12th 2018.
It is worth noting that the Council was not asked to make recommendations but rather to review the issues.
Advance requests for MAID
Current legislation requires that a candidate for MAID be capable – and consents, both at the time of making the request and at the time that the procedure is administered. There is currently, therefore, no possibility of either an advance request or a proxy or substitute consent to MAID.
People are however, under standard consent practice and legislation, entitled either to make their health care wishes known through advance directives or to nominate someone to consent on their behalf. (The legislation varies from province to province.) In Ontario a capable person is entitled to name someone as a power of attorney for personal care and to express his or her wishes for future health care. Those wishes can be either written or verbal. The power of attorney for personal care (or other substitute decision-maker) is obliged to follow those prior capable wishes in consenting to – or refusing care, where possible. I can, therefore, refuse a resuscitation attempt, or life sustaining intervention, in advance, while capable, and my substitute decision maker would be obliged to follow that refusal of treatment when I became incapable. My substitute decision maker is also entitled to withdraw life sustaining treatment in the absence of any specific instructions if he or she thought that was in accordance with my values and my best interests.
The Council looked at three different scenarios to highlight some of the variables when looking at advance requests for MAID.
Advance request when the patient is already eligible for MAID.
In this scenario the patient has requested MAID and has been assessed and deemed eligible. Under normal circumstances there is then a ten-day waiting period. That waiting period can be shortened or waived by the assessors if they think that the patient is likely to lose capacity or die within the waiting period. Permitting advance requests under these circumstances would ensure that the procedure can proceed.
This seems completely uncontroversial. It has the effect of waiving the waiting period (if the patient becomes incapable in the interim) because it gains both consents at the same time. There have been reports of patients declining appropriate pain medication in order to ensure that they retain capacity at the time the procedure is administered. What is given up by the patient in this scenario is the safeguard embedded in the waiting period – the ability to change one’s mind. But if the patient loses capacity he or she has lost his or her ability to change his or her mind anyway.
Advance requests after diagnosis but before MAID eligibility
In this scenario the patient has a terminal diagnosis but his or her death is not deemed (yet) to be reasonably foreseeable. There are potential variations here, one where the loss of capacity is incidental to the underlying diagnosis of a disease that will eventually kill the patient (a patient with a terminal cancer who has a stroke) the other is a neurologically degenerative disease where the loss of capacity is gradual and caused by the disease itself. (For instance, a diagnosis of dementia.)
Advance request before any diagnosis
In this scenario a healthy capable person writes an advance directive – and an advance request for MAID without any knowledge of his or her future health conditions.
Ethical issues and advance requests
Knowledge and information
In order to consent to a treatment or intervention a person must be informed about the nature of his or her condition, the treatment or intervention, its side effects and alternatives and the likely consequences. MAID is different in that the patient must make the request, but the information conditions are similar. In an advance request the person cannot know exactly what his or her condition will be at the time the procedure is performed. So, for an advance request to be honoured we have to either accept that gap in knowledge or require some sort of proxy consent. Proxy consent itself entails a gap, because someone from the outside cannot know the lived experience of the person from the inside. (I will look at this point in more detail in discussion of third party involvement below.)
The knowledge and information gap expands with time (the greater the time between the advance request and the time it is carried out the greater the gap) and expands with difference in health condition. The more different the patient’s health condition between the time of the advance request and its administration the greater the gap.
So, in scenario one there is very little gap between advance request and administration because there is very little time between the two and very little difference in a terminal health condition.
The two variants in scenario two are significantly different. In the case of the terminal cancer diagnosis and the stroke the patient has lived experience of his or her cancer, and the trajectory towards death has some predictability, the significant change is the loss of capacity. So, even if there is a gap in time the trajectory of the terminal health condition could be highly predictable. The dementia case is different. The loss of capacity is gradual, and may well extend through a significant period of time. More significant than the time gap is the knowledge gap. The patient cannot know when he or she makes the advance request for MAID what his particular lived experience of dementia will be.
In the third scenario there is potentially a great gap in time between the advance request and its administration, and there is an unbridgeable gap in knowledge of health condition.
In order to be eligible for MAID the person must be experiencing “enduring physical or psychological suffering that it intolerable to them and that cannot be relieved under conditions that they consider acceptable.”
In an advance request one cannot know what the lived experience of suffering will be at the time of the procedure. So, either a third party (substitute decision-maker) must assess the patient’s suffering from the outside at the time of the administration of the procedure or we must accept the patient’s assessment of future suffering at the time the advance request is made.
Stability of the request
What happens between the time of the request and the administration of the procedure affects our confidence that the administration of the procedure accords with the patient’s wishes at the time. So, repeated requests, continued discussion, involvement of the health care team and family all support the idea that the request is administered in accordance with the patient’s stable wish.
Third party decision-making and action
All health care is relational. At the centre is the relationship between the patient and the care provider. Often the perspective of the care provider is viewed as rather beside the point. The focus is on the patient and his or her needs and the care provider – as professional is there to provide those services in a non-personal – professional manner. MAID does not really fit this model. The legislation specifically permits providers to opt out on the basis of their own personal values. The MAID provider really is engaged – on a personal level, with the person for whom they provide the procedure. With the requirement that consent is given at the time of the procedure the provider really is providing the procedure for – on behalf of the patient, at the patient’s request or order. This would not be so in the case of advance requests. The patent at the time of the administration of the procedure will not be capable of consenting and may not be capable of very much at all. Indeed the patient may not know what is going on at all. In those situations where the provider of MAID had an extended relationship with the patient (perhaps as Family Physician) the provider may be comfortable that MAID is exactly what the patient wanted and may be comfortable providing it. That would not necessarily be the case if the patient was previously unknown to the provider. And, with an incapable recipient of MAID the provider may well feel that he or she is doing to, rather than doing for.
In addition to the relationship between care provider and patient a substitute decision-maker may well be involved in cases of advance requests for MAID. With an advance request there will always be an issue of when to provide the procedure. A substitute decision-maker may be involved in determining that the “trigger” point established by the patient has been reached. A substitute decision-maker’s consent may be required at the time of the procedure. While the evidence from other forms of substitute decision-making may be mixed, many substitute decision-makers feel the burden of decision-making weighs heavily upon them. This is likely to be exacerbated when the decision is to actively take steps to cause the patient’s death.
Experience from other jurisdictions
Belgium and Holland, in particular, have provision for advance requests for MAID though they are rarely used, and they have interestingly different safeguards. In Holland legally valid written advance directives for MAID can be completed by persons over the age of 16. (And between 12 and 16 with additional safeguards.) Beyond that, Dutch physicians providing euthanasia must follow the due care criteria applicable for all cases of euthanasia. These criteria include the requirement that the patient must be suffering. This assessment is performed by the physician. The Dutch guidelines say that suffering assumes a “conscious state.” A person who is not conscious cannot be experiencing suffering and so is ineligible for euthanasia under the Dutch protocols. This is directly opposite to the Belgian requirement that a patient must be unconscious for an advance request for euthanasia to be honoured.
Autonomy and suffering
I have argued elsewhere that there are two distinct paths that lead to the conclusion: therefore Medical Aid in dying should be permitted. The first is from “autonomy,’ the general idea that I ought, to the greatest extent possible have control over the central elements of my life – and death. The Carter decision is largely an autonomy based decision. The other path is through suffering, the idea that we would not make even a dog suffer – that we should “put it out of its misery.” The current legislation (both here and in Europe) tries to unite these two ideas, but they do not always fit well together, and advance requests highlight this tension. When the patient must be capable at the time the procedure is administered we can accept his or her assessment of suffering – and that it is intolerable, at that time (it is a subjective assessment of personal suffering). But in an advance request we either have to accept my assessment now of what will count as suffering at some time in the future then, or we have to go to some sort of third party to assess suffering from the outside. Both versions are uncomfortable.
The Council uses the concept of “relational autonomy.” The idea stands in opposition to the position that to be “autonomous” one must somehow be self-sufficient and independent from others. It is clear that a notion of “autonomy” that required self-sufficiency and isolation from others would be a highly impoverished and somewhat counter intuitive conception. Many of us live lives enmeshed with those we care about. That is, we autonomously, independently choose and embrace connection with the joys, benefits and limitations that brings. The Council uses the idea of relational autonomy to stress the necessary involvement of others in MAID. MAID engages the provider with the patient in significant ways – ways that are highlighted for advance requests. It may well be very difficult to find a provider who would simply administer MAID to a person he or she had never known while capable. The Council also stresses the burden that would be created by advance requests for family members or substitute decision-makers. If substitute decision-makers have to interpret a patient’s instructions or evaluate a level of suffering then that person is entangled in my autonomous decision to choose MAID in a deeply intimate fashion.
The Council was not asked to make recommendations. And it does not do so. The report is finely balanced. The Council accepts the general autonomy-based arguments for permitting advance requests, but it also recognises the range of possible situations where that might occur – and the varied ethical challenges that would arise in those different situations. Despite identifying the range of safeguards that could mitigate those challenges my prediction is that the Federal Government will not take this report as compelling the extension of MAID to include advance requests.