Evidence of meeting #21 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 disease.
A video is available from Parliament.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Thank you, Madam Joint Chair, and thank you to our witnesses for appearing before our committee.
Dr. Buchman, I would like to direct my questions to you. In your opening statement you went to lengths to explain the state of palliative care in Canada and the trouble you've been having in the York Region with getting a hospice. I'm sorry for the struggles you've had.
I think you also mentioned that for long-term care, the average lifespan was 18 months, and that the transfer of patients from long-term care to hospitals is a very difficult and costly process and is often quite detrimental to the quality of life of the patient.
There has been a lot of discussion in the federal sphere, especially following the very evident problems we saw at long-term care during the pandemic, about implementing something like a long-term care act or a long-term care strategy to ensure that we have a set of standards no matter where a Canadian resides.
In the context of your opening remarks, and with palliative care in there as well, what you do think a long-term care strategy should include, at a bare minimum?
Chair and Medical Director, Freeman Centre for the Advancement of Palliative Care, North York General Hospital, and Past President, Canadian Medical Association, As an Individual
Thank you for the question.
The long-term care strategy should include, at a bare minimum, obviously, national standards for care right across the country so that you won't get a deficiency of care in one region versus another. At this point in time, there is. For example, we did see in the pandemic that for-profit long-term care facilities did much worse than not-for-profit long-term care facilities in terms of the number of deaths that occurred within the facilities. We need bare-minimum national standards.
Some of those national standards should include hours of nursing care and personal support care, a minimum but optimal number of hours that each resident should get. The standards should include architecture that includes private rooms and all the latest standards for prevention of infectious disease. They should include vastly increased supports for home care. Rather than putting billions of dollars into bricks and mortar, we need to establish the focus on home care so that people who need long-term care can experience it in their own homes in an adequate way. That's where people want to be.
I think that's obviously where the greatest investment is. We need standards of home care and accessibility in all regions and jurisdictions as well.
NDP
Alistair MacGregor NDP Cowichan—Malahat—Langford, BC
Can I interrupt for 20 seconds? Sorry.
You were talking about the costs. Can you give the committee an example of the costs for someone who meets the end of their life in hospital? They might fall into medical distress, but they are in end-of-life care. What are these costs versus what they would be like in a hospice? I ask because the system is buckling under extreme costs right now. You did take some time to talk about the efficiencies that are present, not only in economic terms but also in the quality of care if we can invest more in hospices.
Chair and Medical Director, Freeman Centre for the Advancement of Palliative Care, North York General Hospital, and Past President, Canadian Medical Association, As an Individual
I'll give you some examples. The latest that I have is old data, but I think it can be scaled up in terms of the number of dollars. It is from the Ontario Auditor General's report of December 2014.
One day in hospital for an end-of-life patient would cost $1,100 scaled up to 2022 dollars. One day in hospital costs $1,100. A palliative care unit in an institution would cost about $700 a day. A hospice residence would be $450 a day, and home care would be $100.
In Ontario, for example, 70,000 patients die—100,000 people die, but about 70,000 die in hospital per year—and if we took, say, half that amount, say 35,000, and moved them to hospice residences, for example, there would be a saving of about $650 per day per patient. Each patient's average length of stay is 21 days. If we took 35,000 times 21 days times $550 for the difference, that comes into hundreds of millions of dollars.
It's the money up front that's the resistance; hence, my hospice only receives about 6% to 7% of the necessary funding to be established. I wonder why we aren't considering that to be essential health care? It makes sense. It's the quality of care that people want and deserve and it is very cost-effective.
The Joint Chair Hon. Yonah Martin
Thank you very much.
Now we'll turn this over to my joint chair for questions from the senators.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Martin. We'll start with Senator Mégie.
The floor is yours for three minutes.
Senator, Quebec (Rougemont), ISG
Thank you, Mr. Chair.
I would like to thank the witnesses for being here.
Good morning, Dr. Gauthier. My first question is for you.
Without using numbers to identify a particular stage of disease, could a person state in their advance request that they want to receive medical assistance in dying at the point when they are no longer able to recognize their family members, when they suffer from double incontinence, or when they have a particular disability, for example? As a professional, what do you think about that?
I have a second question for you.
After hearing your discussion with my colleague Mr. Thériault, I sense that you accept the concept of happy dementia. If the person could include that in their advance request, that would provide an additional safeguard.
Can you explain what happy dementia is? Should medical assistance in dying be given if a person is in that condition?
Emeritus Professor, As an Individual
I am going to start with the question that is easiest to answer: yes, it is possible to include a clause to that effect.
With respect to double incontinence, that is a reversible condition. For example, the person might have a urinary infection or a reversible gastric or intestinal problem. We cannot determine a stage based on a single symptom that may be temporary. Instead, there would have to be a set of symptoms that were considered to be irreversible, in order to say that a person has reached a threshold that justifies medical assistance in dying.
Senator, Quebec (Rougemont), ISG
I have just enough time to ask you a brief question, Mr. Gauthier.
Do you think we could include neurocognitive diseases in advance measures?
Emeritus Professor, As an Individual
That is a very good question. "Major neurocognitive disorder" is, in fact, the new designation used in the international classification as a synonym for "dementia". In Quebec, it is increasingly being used in clinical practice. The committee may need to include these two terms in its documents, since the expression "major neurocognitive disorder" is now used as an equivalent to "dementia" in most fields of practice.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Mégie.
We will now continue with Senator Dalphond.
Senator, Quebec (De Lorimier), PSG
My first question is for Ms. Guillemette.
As I understood your testimony, your committee found that there was a broad social consensus in favour of advance requests for medical assistance in dying for neurocognitive disorders.
Did your committee explore the issue in order to determine what type of oversight would be required? For example, should the Criminal Code provide certain criteria, or should we instead say that advance requests are permitted where allowed by provincial legislation?
Member for Roberval, Government of Quebec
On the legal aspect, I am not really competent to answer, but I would say yes. Yes, it is important to properly define the time when the designated person can report that their family member seems to have reached the stage that meets the criteria the person themself set. This respects their right to self-determination and their pre-established choice. So the idea of happy dementia has to be properly defined, but it will also be important that there be contemporary suffering. That idea was very important in the committee's work and it has to be retained.
On the legal aspect, I will not comment, because that is not my field. At present, we are not at that point. As I said earlier, we are going to wait for the bill to be enacted in Quebec. We will also have to consider the extent to which it will be enacted. At present, there is a lot of speculation occurring.
October 21st, 2022 / 10:30 a.m.
Senator, Quebec (De Lorimier), PSG
Work has been done on advance requests at Université Laval that resulted in a very impressive report. I know the committee has not reached that stage. However, we understand that these requests are associated with the fear of losing the capacity to give consent. In Quebec, as we know, loss of capacity results in a mandate of incapacity and judicial homologation. An entire process is set in motion. So a provision could be added saying that a third person is designated to ensure that their family member's wishes are respected, so that the entire judicial process would take place in a single step rather than multiple steps. With that said, I understand that you are not yet at that point.
Member for Roberval, Government of Quebec
It will probably be clearly defined in the law, but as a committee, we did not go there. Because it is a bill, I cannot tell you what form it will ultimately take.
On our part, we felt it necessary that the person have established criteria when they were capable of doing so. That does not prevent their criteria from being changed at any time when they are incapable. With that said, there was an important criteria, to our minds: contemporary suffering.
Member for Roberval, Government of Quebec
Let us say it is to provide better guidelines, actually. Our intention was to avoid leaving the entire weight of the decision on the shoulders of the medical profession. It is really a heavy burden for them. By providing better guidelines for it, it is more efficient for the medical profession.
Liberal
The Joint Chair Liberal Marc Garneau
Thank you, Senator Dalphond.
We'll now go to Senator Wallin.
Senator Wallin, the floor is yours.
Senator, Saskatchewan, CSG
Thank you very much.
I want to come back to Ms. Guillemette on this concept of happy dementia. It troubles me greatly, because it leaves all of the decision-making to people who may not have been aware of the patients' initial witnesses or concerns, aware of what they may have stated in a document.
I know the bill is not drafted. I'm working on one in the Senate as well.
Do you think it is reasonable, and therefore reasonable for legislators, to propose the following: that a person who fears they may be a victim of a neurocognitive disease, dementia or Alzheimer's because of family or other considerations would create a list, a set of criteria, for what they want and when they want MAID to be used, and that they name third party substitute decision-makers who have agreed to that, both in advance and throughout the process, in constant consultation with MAID providers and other medical or legal professionals? Is that a reasonable thing for us to do as legislators?
The question was for Ms. Guillemette first. If we have time, Dr. Gauthier, I would also like to have a comment from you.
Member for Roberval, Government of Quebec
In fact, the third person who has been designated initiates the request for medical assistance in dying process, but the medical assessment is done by the team and the doctor. There actually have to be quite precise criteria to provide a framework for the expectations of the person with the illness regarding the point at which they want medical assistance in dying to be administered.
Senator, Saskatchewan, CSG
Dr. Gauthier, do you think we can actually do that?
You've talked about the six stages and the defining, but we also know that these diseases are very individual. It may be hard to categorize people, which is of course the very essence of an advance request. I want to be able to make that request when I'm still thinking clearly and rationally, not after the fact or perhaps when I've morphed into a happy dementia state.
Emeritus Professor, As an Individual
The short answer is that we need to have clear descriptions of the stages that are common for most people as they go through a neurodegenerative condition such as Alzheimer's disease, and the wording has to be such that it can be understood by the average Canadian.
Could we perhaps have three choices, or something like that? It's something we can work on together.