In this two-part series, we will explain Quebec's new law allowing Advance Requests for Medical Assistance in Dying (MAiD). Part one will explore the similarities and differences between Advance Requests for MAiD, general Advance Directives, and the Waiver of Final Consent to help clarify what an Advance Request is (and isn't). In my two years of teaching MAiD, I've often encountered confusion about the differences between the Waiver of Final Consent and an Advance Directive. This is understandable, as both do direct future care if a person loses decision-making capacity, but there are serious practical and legal differences. In part one we will clarify the differences between all three. Part two will focus specifically on Quebec's advance request for MAiD in detail.
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Advance Directive
(Depending on where you are in Canada, this may be called a Health Care Directive, Personal Directive, Advance Care Directive, or some other variation. In BC, where we are, it's called an Advance Directive, so that's what we'll use in this article. Information about these directives for each province/territory can be found here.)
We'll start with the one you are likely most familiar with--advance directives. An Advance Directive is a legally binding document that outlines your healthcare preferences, including consent or refusal of certain treatments, in case you lose the capacity to make these decisions in the future. Here are some examples of things that could be included in an advance directive:
Preferences for life-sustaining interventions, such as resuscitation, mechanical ventilation, or dialysis.
Instructions regarding the use of feeding tubes or artificial hydration.
Consent or refusal for certain surgeries or medical procedures.
Instructions regarding palliative care or comfort care measures.
As you can see, the scope of an Advance Directive can be quite wide, and can include any number of future health care decisions (except for MAiD). More information on Advance Directives and Advance Care Planning can be found here.
For our purposes, the important things to know about an advance directive are:
It communicates your specific wishes about a wide range of possible future healthcare decisions.
It can be made before you have any specific health conditions or concerns.
It CANNOT include any directions about wanting MAiD in the future.
Any capable adult can, and probably should, create an Advance Directive.
Waiver of Final Consent for MAiD
Background
In most cases, when a person has requested MAiD, been found eligible, and is about to receive the MAiD medication, they must be given the opportunity to withdraw consent, and to explicitly give their final consent before the medication can be administered.
This is a crucial safeguard, but it does cause some issues. If a person is at risk of losing the capacity to give this final consent, they may be faced with an impossible decision. Do they:
Ask to have MAiD earlier then they would like--while they can give their final consent--because they are afraid of losing this capacity at a later date and then suffering through to their natural death? Exactly what they were trying to avoid by requesting MAiD in the first place; or
Not schedule MAiD, with the hope that they maintain the capacity to give final consent up until the time they are ready to proceed with their assisted death.
This is not a theoretical question, and was faced by many people prior to 2021, maybe most notably by Audrey Parker, who died from MAiD on November 01, 2018. This was sooner than she would have liked for the exact reasons given above. Before her death, Audrey petitioned the federal government to amend the laws to make sure no one ever had to make that impossible choice again. She was successful in that petition, and we now have the Waiver of Final Consent--commonly called Audrey's Amendment--thanks to her sacrifices.
What is the Waiver of Final Consent?
The waiver is a legal document that the person signs with their MAiD provider. This allows that provider to administer the MAiD medication on or before the date the person chooses for their assisted death, if that person has lost the capacity to give their final consent.
A person is eligible to sign a Waiver of Final Consent only if:
They have decision-making capacity when they sign the waiver
They have been assessed and approved to receive MAiD, meeting all the federal legal requirements for such approval
They were determined to have a reasonably foreseeable natural death,
They were advised they are at risk of losing capacity to provide their final consent, and
They have chosen a date for their assisted death
For our purposes, the important things to remember about the waiver of final consent are:
the waiver is only available to people who have been found eligible for MAiD
the person must have a reasonably foreseeable natural death, and
they have chosen a date for their assisted death
This means, if the person doesn't meet all of the MAiD eligibility criteria, they cannot sign a waiver of final consent. This point will be particularly relevant when discussing Quebec's Advance Request for MAiD below and in part 2.
Advance Requests for MAiD (Quebec only)
We have Advance Directives for future health care wishes (except for MAiD), and a Waiver of Final Consent for those who want and are eligible for MAiD but are at risk of losing the ability to provide final consent, so we're all good, right? Not quite. What if a person doesn't meet the MAiD eligibility criteria now, but likely will at some time in the future, but when that time comes they have lost the capacity to consent to the assessments and the provision of MAiD? Maybe an example will help.
The Problem
Let's imagine a person has just been diagnosed with mild dementia. This disease will, if nothing else intervenes, lead to that person's death. We've already established that people can't add MAiD into an Advance Directive, but what about applying for MAiD now? Would they meet the eligibility criteria? Maybe not. Let's take a look at the basic MAiD eligibility criteria.
To be eligible for MAiD a person must:
Have a serious illness, disease, or disability
Be in an advanced state of decline that cannot be reversed
Be experiencing unbearable physical or mental suffering from the illness, disease, disability, or state of decline that cannot be relieved under conditions the person finds acceptable.
How might these eligibility criteria be applied in cases of dementia?
Yes, dementia is a serious disease, but in the very early stages it might be hard to say the person is in an advanced state of decline. Showing symptoms certainly. But in an advanced state of decline? Maybe not. Same with the unbearable suffering criterion. Suffering? Quite possibly. Unbearably? Maybe not. There's also the fact that to be eligible for the Waiver of Final Consent they would have to have a reasonably foreseeable natural death. The prognosis for mild dementia is measured in years, so might not be considered reasonably foreseeable. Even if they were found eligible for MAiD based on their decline and suffering, they may be faced with the same impossible decision as Audrey Parker.
Where does that leave these folks? They might not be eligible for MAiD this early in their illness, and would have to wait until they're in an advanced state of decline, and suffering unbearably. In cases like dementia, that likely means waiting until they also have some decline in decision-making capacity, meaning they might not be able to apply for MAiD then either. To be clear, capacity with illnesses like dementia is not an all-or-nothing thing. Capacity can vary day-to-day or hour-to-hour, and varies based on the complexity of the decision to be made. But the advanced decline and unbearable suffering of dementia can't be wholly separated from some change in decision-making capacity.
This is where Quebec's Advance Request for MAiD comes in.
"An advance request for medical assistance in dying is made by a person who has been diagnosed with a serious and incurable illness leading to incapacity (for example, Alzheimer’s disease). The request must be made while the person is still capable of consenting to care, with a view to receiving medical aid in dying when they become incapable of doing so".
This allows a person who has been diagnosed with dementia, for example, to formally request MAiD for when their condition enters some future state. They must still meet the federal eligibility criteria—including the advanced decline and unbearable suffering discussed above—before MAiD can be provided, but they get to describe what that suffering is to them now, while they still have the capacity to articulate it.
As the person’s disease progresses, their medical team, in collaboration with the person’s Trusted Third Person (more on Trusted Third Person in Part 2) will assess whether the individual has lost the capacity to make medical decisions, and if the unbearable suffering, as the person described in their advance request, is occurring. Then, using their clinical judgment, the doctor or nurse practitioner will determine if providing MAiD aligns with the person’s previously expressed wishes and complies with both federal and provincial laws.
For our purposes, the important things to remember about Quebec's Advance Request for MAiD are:
The person must have been diagnosed with a serious and incurable illness leading to incapacity to give consent to care, and
Must describe in detail in their request the clinical manifestations, such as symptoms, associated with their illness that will constitute the expression of their consent to receive MAiD when they have become incapable of consenting to care, and
Before MAiD can be provided, must have lost the capacity to make medical decisions as a result of that illness, and be experiencing lasting suffering as they described in their Advance Request.
There's much more to Quebec’s advance requests for MAiD, but we'll discuss that in more detail in part two, coming soon.
Advance Directives vs Advance Request for MAiD vs Waiver of Final Consent
As you can see, these legal documents are meant for very different situations. Understanding their unique roles is crucial: Advance Directives outline future healthcare preferences, the Waiver of Final Consent allows MAiD without final capacity, and Advance Requests in Quebec provide an option for those at risk of future incapacity. Each serves a distinct purpose, ensuring individuals have choices that align with their healthcare needs and values.
In part two we'll cover Quebec's Advance Request for MAiD in detail. Subscribe now to be notified when part two of this series is released! (It’s released! You can find it here)