Evidence of meeting #6 for Medical Assistance in Dying in the 44th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was request.
A video is available from Parliament.
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
No. I'm talking about the provision of MAID, not the withdrawal of medical services.
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
Yes. I understand. That's what I'm talking about too.
The Joint Chair Hon. Yonah Martin
Thank you.
Next we'll have Monsieur Thériault for five minutes.
Bloc
Luc Thériault Bloc Montcalm, QC
Thank you, Madam Chair.
I'll begin with a question for Professor Downie.
Let's take someone experiencing cognitive degeneration who makes an advance request for medical assistance in dying. Clearly, a time will come when that person begins to lose what we call the attributes of personal life, such as self-awareness and relational capacity, not to mention existential suffering. When they have reached the terminal stage of the illness, let's say Alzheimer's disease, they would be only biologically alive, in a mostly vegetative state.
When an advance request has been made, should one wait until patients have reached this ultimate state to consider medical aid in dying morally acceptable, or can it be administered at an earlier stage in the disease, based on criteria specified by the patients themselves?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
I believe absolutely that it is for the individual to determine what constitutes a life of enduring and intolerable and irremediable suffering for them. It's very clear that it can be physical suffering or psychological suffering or existential suffering. It's for the person to decide what that will be and to then very carefully lay that out, so that when they are no longer competent and capable of decision-making for themselves, that written request will be able to speak for them.
It need not be at the end stage. They may consider a life of intolerable suffering to come much soon than end-stage dementia, for instance. They're allowed to make that decision.
Bloc
Luc Thériault Bloc Montcalm, QC
Yes, that's possible. A person with dementia can live a long time after having reached the terminal phase of the illness and, at the end of the line, not die from that illness but from collateral effects. That's what leads me to my next question.
Are you advocating two different regimes to cover two types of medical conditions, a regime of advance requests for medical assistance in dying and a regime for advance medical directives like the one we have in Quebec?
I'll add my next question right now. Do you believe it's necessary for a patient to have previously received a diagnosis?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
The first thing I would say is do not—please, do not—blend the two regimes and think that if it's dementia, you go through advance request, and if it's something else prior to diagnosis, you go through the mandate or the advance directives in any other province. Do not blur them. This is a federal issue. It is dealt with under the Criminal Code. MAID can only be dealt with that way, I believe.
You could have two regimes for advance requests under the federal Criminal Code. One would be for when you have had a diagnosis with a serious and incurable condition. The other could be prior to diagnosis. I think they would have different procedural safeguards. You have different amounts of information available to you. They might be at different times. They're much more likely to be at different times if it's pre-diagnosis and that kind of thing, so I could see two federal regimes, but I don't see MAID ever being dealt with under a provincial advance directives regime.
Bloc
Luc Thériault Bloc Montcalm, QC
Are you advocating expanding access to medical assistance in dying to enable people to make a request prior to having a diagnosis, or do you feel it's absolutely essential to first have a diagnosis?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
I think the case is made most strongly when you have a diagnosis for a serious and incurable condition. You can respond to a lot of the concerns people have about advance requests: You don't know what condition you're even going to have, so how can you possibly project yourself out into the future and know that it constitutes intolerable suffering? You do have that piece of it—that you can predict better—and that helps people feel more comfortable, and it actually undermines some of the arguments against advance requests.
I would add one thing in relation to something you've been saying—
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
For people who are before diagnosis—and we have been talking about strokes and so on—we also need to inform people about alternatives to MAID in those circumstances. Those include palliative sedation and voluntary stopping of eating and drinking. Quebec has done a much better job about palliative sedation than the rest of Canada. We should be talking about the entire spectrum of end-of-life care.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you very much, Madam Co-Chair.
Dr. Downie, I'll continue with you.
This is very much an issue of personal agency and people making very personal and tough choices.
I guess for me, when you speak to a lot of people, you have to acknowledge that out there is a lot of stigma surrounding dementia. People are very afraid of getting that diagnosis. They have very real concerns with long-term care. We've seen the worst of the worst through the last two years of just how bad it can get. There is a very real fear out there about the level of care that exists.
One thing I'm personally struggling with is that if we do permit a regime in which advance requests are made or permitted, what do you think about people's fear of the lack of caregiving options that exist out there for people with dementia? How do you think that's going to influence their decision in making that advance request? How do we appropriately deal with that very real issue as a committee?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Yes, it's very real.
There are several ways, and the first is to point out that the stigmatization in some sense goes in both directions. If you don't let people have advance requests, you're in a sense saying that people with dementia can't be trusted to make decisions for themselves in the future because they're too vulnerable to these external pressures and so on. I think that itself is stigmatizing of persons with dementia.
The second point is that it is the person's decision. It's not society saying, “Your life as a person with dementia is not worth living.” It is only for the person. I would never say to somebody else who has dementia that their life is not worth living; it is for the person to say whether it's intolerable suffering. That way, it doesn't carry a stigmatization, because it's internal.
With regard to supports and services, this is your opportunity to be bold. It is to be bold about the parallel tracks. You're a committee sitting in the House and the Senate. You have federal levers to improve the supports and services for people with disabilities and mental illnesses. My whole argument all along has been parallel tracks.
An individual has access to MAID while they're capable, or through an advance request. At the very same time, we put a huge push on. We shine a very bright light and demand accountability for improving the supports and services that are so desperately needed. They're not mutually incompatible. In fact, by having a conversation about MAID, we now have an opportunity for people to listen to a conversation about supporting persons with disabilities and mental illnesses in Canada. That's where I hope this committee is bold and figures out ways to use the federal purse and convening powers. You have all kinds of tools. Use those to fix the problems that are coming to light and that people are finally paying attention to. Don't constrain access to MAID, because you should never make individuals hostage to fixing systemic problems.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
To expand on that, it's not just people's fear about getting a dementia diagnosis but also that many marginalized communities in Canada—the disability community and other groups—have experienced a systemic lack of equitable access to health care through their entire lives.
Is there anything further you want to add on the very real fears those groups are presenting to us as well?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
I think they need to hear the evidence about the impact on vulnerable populations. It is not what is being presented. I would plead for you to talk to the primary authors on the empirical research that's been done in the Netherlands, Belgium and in Canada, none of which demonstrates that there is this vulnerability. If anything, there's a vulnerability to not getting access to MAID among those populations. That would be the first thing.
The second thing I'd say is that denying access to MAID is not going to mean that people get access to these supports and services. All they're left with is the life that they have just described to you as one of intolerable suffering. They're left in that life because at the individual level, they're not suddenly going to be offered all of these other options.
I say back to that, “We hear you about your concerns.” Circling back to what I said before, “You are right to be dissatisfied with how Canada and the provinces have supported you, but don't be concerned that this is going to put you at risk.” Allowing access to MAID through advance requests or the sunset clause won't cause that.
The Joint Chair Hon. Yonah Martin
Thank you, Dr. Downie.
I'll now turn this over to the co-chair for questions from senators.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Martin.
We'll go to the senators. These are three-minute rounds, and we'll begin with Senator Kutcher.
Please go ahead, Senator Kutcher.
Senator, Nova Scotia, ISG
Thank you very much, Mr. Chair.
Before I start my three minutes, I would ask that Dr. Ferrier provide us with evidence to support the statement about elder abuse through the forgery of advance directives. We'd like to see the research for that, please.
These questions are for Professor Downie.
We've heard opinions that a clinician or third party should define what an irremediable medical condition is for a patient. Others have opined that it's the patient who determines what an irremediable medical condition is for them. I'd like your thoughts on that.
My second question is this: We've heard the opinion that procedures or safeguards cannot provide society with comfort with respect to advance requests being properly discharged. What is your thinking on that issue?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
On irremediability, two things are going on.
One is for the patient and one is for the clinician. The patient decides what treatments, if any, they're willing to try. Then the clinician says, “Here's what I understand about whether that will or will not work.” That's a clinical choice, but whether the person wants to take the treatment is a moral, personal choice for the individual.
We have to think about incurability similarly. We have to think about them as having different roles, and ground them in the expertise each one has. The patient has expertise in what constitutes suffering to them, what their values are and what gives them meaning. The clinician has expertise in what a treatment can do for this condition—the trajectory, and so on.
On safeguards, I would say we don't have evidence that there is any risk of what you mentioned, in part because I have not seen the evidence some of what we've heard as described as harms and abuses. I don't believe it's there. It's how people are reading things. I think that with safeguards, we absolutely can.
The other thing I'd say is that we're already doing it. If we think we don't have adequate safeguards, then we need to be changing a whole bunch of other things we're doing, including advance directives, substitute decision-making in ICUs, and final consent waivers. All of those are premised on having safeguards that are adequate. Those same but enhanced safeguards will do the job.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you very much.
Ms. Mégie, you have the floor for three minutes.
Senator, Quebec (Rougemont), ISG
Thank you, Mr. Chair.
I'd like to thank the witnesses for being here with us.
My question is forx Dr. Downie.
How do advance requests for medical assistance in dying and advance medical directives resemble or differ from one another under the current provincial and territorial regimes?
If requests for medical assistance in dying were authorized following a diagnosis of dementia or without a diagnosis, how would the respective regulatory frameworks differ?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Advance directives happen at a provincial or territorial level. They are largely about withholding and withdrawing treatments: People get to make a decision now about what treatment decisions they want made and how they want them made in the future, should they lose decision-making capacity.
It's important to note there are two kinds, instruction and proxy. Instruction is when I say, “These are the decisions I want.” They are written down. I tell you. Proxy is when I say, “I want my sister to make decisions on my behalf.” Nobody advocating advance requests for MAID is suggesting we would have proxy directives. We would only have an instruction. That's the provincial context.
The advance request context is federal. It's dealt with through the Criminal Code. It is only for MAID. It is only a written request developed and signed in the context of a clinician-patient relationship—probably multiple clinicians—over time, as the person is fully informed and as all the eligibility criteria for MAID are checked, such as voluntariness, having the information, and so on.
They cover different health care interventions and they have different rules. They are regulated in different ways, because the federal one would be regulated by the federal government and the provincial ones are done provincially, through colleges and so on.