Evidence of meeting #5 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 care.
A video is available from Parliament.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
You gave examples of neurodegenerative diseases and spoke about strokes. There can be cases where, even among young people, the first time something like that happens, it's over. In other words, those affected will never be in a position to say they want to make an advance request, and the situation can only get worse.
How would you view a situation like that?
President and Neurosurgeon, Quebec Association for the Right to Die with Dignity
I may have expressed myself poorly, and if so I'm sorry.
Cognitive neurodegenerative diseases like Alzheimer's fall into a class of diseases. It excludes people who are brain-damaged, whether as a result of cranial trauma, strokes, or brain hemorrhages. That's an entirely different category. These patients will either have already given their advanced directives, which is nevertheless relatively rare, or not done so. If they have not, then the decision burden falls to the care team and the family, as is currently the case with respect to aggressive therapy.
Cognitive neurodegenerative diseases are an entirely different category.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Good. You've expressed that very well. Thank you for reminding me of what exactly you had said before. It's come back to me now. That's exactly what you had said.
Now, let's talk about an instance in which someone might receive a diagnosis for a neurodegenerative disease like Parkinson's. You mentioned a few of these diseases. Alzheimer's is the one we hear about the most. I come from a remote rural region, where it's difficult to have access to specialists. We often have to go far and wide to find a specialist, and it can be tough. Theoretically, can someone, at the time of receiving a diagnosis, already be at an advanced stage of the disease and incapable, from the specialist's standpoint, of objectively deciding on their own to make an advance request? Do you believe that's possible?
President and Neurosurgeon, Quebec Association for the Right to Die with Dignity
I don't have numbers for you, but based on 35 to 40 years of my own experience, I think it would be very difficult. When people begin to have memory, judgment or other problems, they consult someone. Most of the time, it's their GP who broadly diagnoses neurodegenerative diseases. For a more accurate diagnosis, it often requires a specialist like a neurologist, a geriatrician or a psychogeriatrician.
Liberal
René Arseneault Liberal Madawaska—Restigouche, NB
Thank you, Dr. L'Espérance. I don't have much time left either, and would like to ask Dr. Bach a question.
Dr. Bach, you appear to be saying that disabled people don't suffer because of their serious and irremediable condition, but rather from a lack of support and services for their disabilities.
I was on the first joint committee on medical assistance in dying, and clearly remember when Mr. Fletcher, a quadriplegic and former minister in the Harper Cabinet, came to tell us that he did not have suicidal ideation, that he was well cared for and treated, but that if one day he were to decide to request medical assistance in dying, he wouldn't want to be lectured to by anyone.
We've heard your comments. What would you say to Mr. Fletcher?
Managing Director, Institute for Research and Development on Inclusion and Society, As an Individual
I certainly accept that people live with grievous and irremediable conditions that cause them immense suffering. Some of that is motivated by lack of supports, but I know that in many situations that's not the case.
I guess my point this evening is that it's very problematic to move to introduce these authorizations for advance requests, because advance requests are not consent, remember. Someone who is going to be authorizing the death of someone else is a substitute decision-maker. That's the problem here.
When you make an advance request, as the special commission report in Quebec tabled in the National Assembly in December said, yes, advance requests should be made in a free and informed manner, but that's not about consent to something that's going to happen in five years. I think we just have to have our eyes wide open to the reality that we're going to have substitute decision-makers causing the death of another person who has no idea of what's going on. They are not consenting to their death.
You can't consent to the death years in advance, because you don't know the circumstances. Informed consent is all about understanding the circumstances in the current moment. We're crossing the Rubicon—
The Joint Chair Hon. Yonah Martin
Thank you, Mr. Bach.
We'll go next to Luc Thériault for five minutes.
Bloc
Luc Thériault Bloc Montcalm, QC
Thank you, Madam Chair.
My question is for Dr. L'Espérance.
Dr. Cohen-Almagor, who was in the previous group of witnesses, said—I'm speaking to the neurologist—that we don't know, or understand enough, about the brain to think that we can intervene by means of advance requests.
What do you think of that? What state is the brain in when we reach the final phase?
President and Neurosurgeon, Quebec Association for the Right to Die with Dignity
To begin with, you are attributing something to me that I am not. I'm a neurosurgeon, not a neurologist.
We can tell that the brain is functioning properly when patients have all their capacities. We have mechanisms to check on a patient's capacities. That, moreover, is what we do every day, whether by operating on patients, or responding to their requests for medical assistance in dying. The first thing we do is a capacity assessment.
Now, when patients have dementia and have lost their capacities, I believe everyone accepts the situation. What is the state of their brain? Well, the brain is not functioning as well as it used to. I can't tell you much more than that.
How can we say on the one hand that a patient is functioning less well, has lost capacity, and at the same time, that we no longer know whether that patient made the right decision? And yet, throughout life, the patient reported wanting to live in such and such a way and not wanting to reach the end of life in such and such a condition. It's this aspect of the discussion and the argument that I have trouble accepting, from my own standpoint.
Bloc
Luc Thériault Bloc Montcalm, QC
Some witnesses told us that a person with a degenerative disease is no longer the same person. There are different stages to the disease. So people who have made an advance request are stating what they want and it's assumed that it is a solemn moment between them and their doctor.
How would you respond to the argument that it's no longer the same person when the time comes to follow through on the advance request?
President and Neurosurgeon, Quebec Association for the Right to Die with Dignity
Well, they are no longer the same person they were throughout their life, whether at 60 years, 70 years, or 80 years. Why, all of a sudden, with dementia, are they no longer the same person? It's true that it's no longer the same person because they no longer have the brain they used to have when they lived and related with other people.
We also regularly make decisions through other people for those with brain damage, who have suffered cranial trauma, massive strokes, and so on. We make decisions for them, because they are no longer there to tell us what they want or don't want. We make decisions for them because they have left advance directives with respect to aggressive therapy.
In medicine, it's a fairly regular occurrence for us to make a decision for the patient with the family, friends, etc. We generally do so for cases of aggressive therapy, but then we are no longer dealing with the same person.
Bloc
Luc Thériault Bloc Montcalm, QC
I was questioning Mr. Deschamps earlier. He said that heroic treatment was called for. He mentioned a third doctor to confirm the advance request.
Isn't there a danger of adding so many conditions and obstacles that in terms of your practice in the field, moving ahead would be virtually impossible in the end?
President and Neurosurgeon, Quebec Association for the Right to Die with Dignity
Yes, you're right. The answer is in your question.
What we have learned in Canada over a period of six years now, and slightly longer in Quebec, is that we never encountered the slippery slope against which everyone was warning us. A doctor assesses a patient and a second doctor or a clinical nurse does an assessment to determine whether the patient's circumstances meet the criteria. To my knowledge, and according to what is reported to us by Quebec's commission on end-of-life care and coroners elsewhere in Canada, there have been no problems of this kind.
In Quebec, there are confidential discussion groups made up of doctors. In Canada, there is the CAMAP, where disputed cases are discussed. Some prefer not to go in that direction. There is discussion, but it is about a clinical plan.
I will conclude by saying that decisions like these are made every day in neurosurgery and cardiac surgery. The administration of all these aggressive treatments—and I am using the word correctly—of our patients is a decision made in accordance with our collegial procedure.
The Joint Chair Hon. Yonah Martin
Thank you.
Mr. MacGregor, you are next. You have five minutes.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you, Madam Co-Chair.
Dr. Andrew, I'd like to start with you. In your opening remarks, you were going over the advance directives of care that are currently allowed in our provincial medical system. Before patients go through a major surgery, for example, they could talk about a “do not resuscitate” order. There also could be different examples of withdrawal of care.
Could you tell us what some of the more common forms of withdrawal of care would be? Would it be if a machine was breathing for them? Perhaps you can just elaborate on that.
Professor of Medicine in Geriatrics, Dalhousie University, Nova Scotia Health Authority, As an Individual
Sure. Thank you for the question.
Really, you can think about these decisions as happening at every stage along somebody's entire journey. Even people who have no symptoms at all may decide that they can justify, for good reasons, that they do not want to have testing, screening, examinations or X-rays. They don't want to know what they would find, or they don't want treatments or don't want to go down that road. They could decide that before they even have any symptoms. They might decide it when they have such symptoms as a chronic cough or loss of weight. They might consider their options and decide not to have the investigations because they don't want to go down that road, even if it would potentially identify a cancer or something that potentially could be treated, with some lengthening of life.
Somebody who's diagnosed with a probable serious condition, such as a mass identified at the first stage of imaging or testing, may decide that they don't want to have further investigations, like a biopsy, to find out what it is. Again, they do not want the treatments that would put their quality of life in jeopardy once they weighed the options. Someone who has a diagnosis of a serious condition may decide that they don't want any recommended treatments once they have the options in front of them. Surgery, chemotherapy, radiation—these all come with very significant impacts on people's quality of life and well-being. People who have kidney failure, for example, may decide that they don't want dialysis—
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Dr. Andrew, I'm sorry for interrupting. I just want to give you a specific example.
Let's say a patient's about to go through a major surgery. Something happens—a major blood clot hits them—and they are left with a debilitating stroke. They're completely unresponsive. They're basically brain-dead. They have given advance directives of care specifying withdrawal of care.
Let's say I'm in this condition. I don't want you to feed me anymore. I want you to unplug the machines. Are those specific examples?
Professor of Medicine in Geriatrics, Dalhousie University, Nova Scotia Health Authority, As an Individual
Yes, they are, certainly.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
In that case, you have these advance directives of care and a patient has suffered a massive, debilitating stroke. How, then, does our law allow for them...? We're talking about consent. How is consent understood in that case, when a patient is unresponsive and brain-dead, but you have to listen to the directives they gave you earlier? We're talking about consent. They're obviously not able to give you consent, but you are withdrawing the care that is keeping them alive.
Professor of Medicine in Geriatrics, Dalhousie University, Nova Scotia Health Authority, As an Individual
Part of the reason we do that is that we want it to be based on what they would want. That's why we listen to an advance directive preferentially to just deciding what's in their best interest. Of course, the ideal advance directive might include naming a substitute decision-maker who can help walk through the different options that are presented in front of them—somebody who's trusted and chosen by the person.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Absolutely.
Yes, we do have real-world examples right now of people who aren't able to give current consent but who have very specific instructions that allow people to make decisions that will ultimately result in their death through withdrawal of care, because that is what they specified.
As my final question, from a physician's point of view, what are the specifics you would like to see in a statement accompanying a possible advance request if we, as the Parliament of Canada, are going to allow this? Perhaps in the last 30 seconds you could talk about some of the specifics that physicians would really like to see. You talked a lot about clarity in how we want to see that.
Professor of Medicine in Geriatrics, Dalhousie University, Nova Scotia Health Authority, As an Individual
I think the detail would be really important.
Again, my examples were not just not recognizing the family. I want to understand really where that request is coming from, what you mean by that, and give people enough education around creating these advance requests that they understand what elements of the symptoms of their condition would be the troublesome ones to them.
Maybe it isn't that they forgot what they had for breakfast but that they are completely traumatized anytime someone comes near them to help them with their incontinence product, or something like that. The suffering can be quite severe.
The Joint Chair Hon. Yonah Martin
Thank you very much.
I'll turn this back to our co-chair as we go into questions for the senators.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you.
We are now moving on to the round of questions for senators. We'll begin with Senator Mégie.
Go ahead, Senator Mégie. You have the floor.