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.
Conservative
Michael Barrett Conservative Leeds—Grenville—Thousand Islands and Rideau Lakes, ON
Thanks very much, Madam Co-Chair.
Thank you to the witnesses for appearing today.
Dr. Ferrier, I was wondering if you could tell me about how we can make advance requests safe by ensuring the person signing the request is fully conscious of what they're signing and of the authority that it gives.
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
Thank you for that question. I'm happy to address it through the chair.
I've heard a lot in the last hour about how to prepare people to sign advance requests, but in my view, and in the view of the medical literature on advance care planning, it is still not adequate consent, because you're lacking many elements of what you would need to know to consent to any kind of procedure.
In my experience, people sign all kinds of things without knowing exactly what they're signing. I've seen many of what we call in Quebec “protection mandates”, which are supposed to be just to name an alternative decision-maker. For some reason, they have started having end-of-life wishes inserted in them, which are so vague and general that they basically authorize any random doctor who meets you in the emergency room to decide that a treatment is superfluous given your condition.
It's very dangerous. When I ask the patients what they mean by it, they say it means that they don't want to be a vegetable. Essentially, it was not their wishes. It was a text that was given to them by somebody they trusted, and they signed it.
I would expect the same thing to happen regardless of all the safeguards that I've heard about in the last hour or so, because right now with the MAID regime in Canada, there are all kinds of people dying by MAID, horrifying the whole country. I can tell you even more stories from my own experience and from the experience of the people around me about how safeguards don't work and documents can be abused.
In my practice in geriatrics, I've seen documents abused all the time. I could tell you many stories, but I don't think I have more time to tell them right now.
Conservative
Michael Barrett Conservative Leeds—Grenville—Thousand Islands and Rideau Lakes, ON
Okay. Thanks, Doctor.
In your opening comments, you talked about advance requests for MAID being used in elder abuse cases. Can you elaborate on that for me, please?
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
Yes, I'd be happy to elaborate.
Obviously, that has not happened because advance requests are not legal in our country, but there are documents that delegate decision-making authority to another person, and I've frequently been to court with families squabbling over who has authority over the patient. It's often about money. It's often about how much of the inheritance will be used up in paying for the care of this older person. It's not 100%, but I think the same thing will happen with requests for MAID. It is expensive to care for people. Family members and people around my patients are not always benevolent and are not always acting in the interest of the patient. I've seen forged mandates. I've seen mandates signed without an understanding of what people were doing.
There are a lot of dysfunctional social groups in this world, including families. I can see that this would just explode with the number of people getting dementia now. It worries me a lot. My patients are very vulnerable, and you can talk as much as you want about autonomy, but even without dementia, they are often not as autonomous as theoreticians think they should be.
Conservative
Michael Barrett Conservative Leeds—Grenville—Thousand Islands and Rideau Lakes, ON
Right, and I appreciate the clarification in your response that advance requests are not the law of the land here, but they are elsewhere. Advance requests are legal in other countries. Can you relate that to your previous answer?
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
Are you asking specifically about elder abuse?
Conservative
Michael Barrett Conservative Leeds—Grenville—Thousand Islands and Rideau Lakes, ON
Yes. Building on your previous answer, what has been the effect of advance requests in other countries?
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
I think I couldn't say it better than what Professor Lemmens said in the last hour about how in the Netherlands, for example, the popularity of advance requests is going down—not up—because of all of the hazards, problems and examples of the lack of safety that are being demonstrated in that country. I think that's very valid evidence for what we decide in Canada.
Conservative
Michael Barrett Conservative Leeds—Grenville—Thousand Islands and Rideau Lakes, ON
Okay. I think I'm out of time. Thank you very much, Dr. Ferrier.
Thank you, Madam Co-Chair.
The Joint Chair Hon. Yonah Martin
Thank you.
Next we'll have Mr. Anandasangaree for five minutes.
Liberal
Gary Anandasangaree Liberal Scarborough—Rouge Park, ON
Thank you, Madam Co-Chair. I'd like to thank the panel.
I'm going to focus my questions on Dr. Downie.
You indicated in your testimony that advance requests should be made at or after a diagnosis. Can you indicate if there are any situations in which such a request can be made before a diagnosis?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
From a public policy perspective, I'm not advocating for that right now. I wouldn't be arguing against it and I wouldn't want to try to defend not having a broader approach in court. You heard the arguments around that. However, I think that they are different, and one of the principal areas where they're different is, for instance, the amount of information that you may have available to you in order to make a decision.
Once you have the diagnosis of a serious and incurable condition, I think you absolutely can make a free and informed decision about an advance request for MAID. We'd need to think differently about it if it comes earlier.
Liberal
Gary Anandasangaree Liberal Scarborough—Rouge Park, ON
Can you elaborate on the mechanics of what an advanced request would look like at the end of life, at a point when somebody loses their capacity to make a decision?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
Do you mean when it's being triggered and used? What's really important is we need to think of these differently in terms of the procedural safeguards and what the documents would look like and what the processes would be.
There are indeed failings in the advance directive regimes. I'm not looking to graft this on to those. I think what you would do is have the person write a document in collaboration with a clinician. It's a written arrangement—an agreement between people—and it would set out what the person considers to be intolerable suffering and objective criteria to determine whether those criteria are met.
For example, my intolerable suffering might be about a loss of personal identity, personal integrity and my own conception of dignity. What I couldn't do is just say, “When I no longer have personal integrity.” How can somebody else assess that? What they can assess, for instance, is if I say I can no longer name my spouse or children any day at all for two weeks straight. I could say that, or I could say that when I am at stage 7 dementia. That is an objectively assessable condition that I tie to my personal determination of what constitutes intolerable suffering.
What would happen is that somebody would say, “This person has lost decision-making capacity. There is an advance request. Here are the objectively assessable conditions for the provision. Have they been met?” The clinician would be able to assess that.
Liberal
Gary Anandasangaree Liberal Scarborough—Rouge Park, ON
Dr. Downie, at that point, is it a clinical decision, a decision of a substitute decision-maker, or a combination of both?
University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual
It is, I think, never a decision of a substitute decision-maker. There is no room for substitute decision-making in this context. It is the individual who was saying what is to be done to them at a point at which they have lost decision-making capacity, and the clinician assesses the objectively assessable conditions because you've sorted that out by writing down your written request. You figured out what will work. It is something that clinicians can assess, and they determine whether those conditions have been met or not.
There is no substitute decision-making here at all.
Liberal
Gary Anandasangaree Liberal Scarborough—Rouge Park, ON
Thank you, Dr. Downie. I'll pass my time to MP Maloney.
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
Thank you. My question is for Dr. Ferrier.
Doctor, you said advance consent can never be fully informed. Informed consent is a legal concept designed to protect a patient, as I understand it. Arguably, nobody can ever be fully informed when they give consent in medical situations, but they do their best, and this is no different.
My question to you, Doctor, is about a situation in which I have a terminal illness that I know cannot be cured. My fear is not dying; my fear is living in misery. If one of the factors that I consider in making my decision to provide consent in advance is that I will not be able to communicate when the time comes, is that not properly informed consent? I'm taking that into consideration. I'm fully aware of the circumstances and what they might be then.
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
You're informed, theoretically, about what the experience of dementia might be to you.
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
No, Doctor. I have terminal cancer and I know I'm going to die. I know I might be in a situation in which I might not have the cognitive capacity to change my mind, but I've made the decision that I won't have the ability to change my mind and I know I don't want to live in misery. Is that not informed consent?
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
That is already legal, for one thing. It's not what we're talking about here, I don't think, but—
Liberal
James Maloney Liberal Etobicoke—Lakeshore, ON
No, no; you're talking about an advance directive versus an advance instruction for MAID.
Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual
But the waiver of consent is already in the law. You cannot—