Medical Assistance in Dying Committee on Oct. 7th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good morning, everyone.

I call to order meeting number 19 of the Special Joint Committee on Medical Assistance in Dying. Welcome to the members of the committee, the witnesses and the members of the public watching this meeting on the Internet.

My name is Marc Garneau, and I am the committee vice‑chair from the House of Commons. With me is the Hon. Yonah Martin, the committee vice‑chair from the Senate.

Today, we are continuing our statutory review of provisions of the Criminal Code relating to medical assistance in dying and their application.

I would like to remind members and witnesses to keep their microphones muted unless they are recognized by name by one of the joint chairs. All comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly. Interpretation in this video conference will work as it does in an in-person committee meeting. You have a choice at the bottom of your screen. You can probably see the interpretation button that gives you the choice of “floor”, “English” or “French”.

With that, I would like to welcome our witnesses for our first panel. They are here to discuss the state of palliative care in Canada.

As an individual, we welcome Dr. Geneviève Dechêne, who is a family physician.

We have Dr. James Downar, professor and head, division of palliative care at the University of Ottawa.

We have Mr. Spencer Hawkswell from TheraPsil, president and chief executive officer.

Thank you for joining us this morning. We will begin with opening remarks. Each of you will have five minutes to speak, and we'll start with Dr. Dechêne.

Go ahead, Dr. Dechêne.

[Dr. Geneviève Dechêne, Family Doctor, As an Individual]

Thank you for allowing me to address the Special Joint Committee on Medical Assistance in Dying.

As a physician specializing in home‑based palliative care, I would like to talk to you about the lack of home access, both for palliative care and for medical assistance in dying.

I am speaking to you this morning as an expert in home‑based palliative care who has been practising in Quebec for 35 years, and this home‑based care covers seniors' residences. In Quebec, clinicians have unfortunately so far failed to convince decision makers of the importance of giving people access to comprehensive palliative care at home. I am talking about multi-professional palliative care teams. These teams should include at least the basic duo of a nurse and a physician, who work as a team to provide 24‑hour care. In Quebec, we use the term “intensive team”.

These teams are experts in palliative care and have demonstrated their efficiency. Hospitalizations are reduced by 65%, and 64% of the deaths of patients under care are at home. These figures are good and comparable to those of the palliative care teams of the main English-Canadian and European authorities. Unfortunately, Quebec clinicians are still trying to get people to accept the average length of palliative medical care for end-of-life patients at home, which is eight months, not seven days, as set by Quebec authorities in 2019.

International evidence shows that home-based palliative nursing care is enhanced care. This is the expertise of clinical nurses with undergraduate degrees who are dedicated to this practice. These nurses are given additional training and time to care for these difficult cases and support patients' loved ones, who are very actively involved in home care. It's not a basic nursing practice, and it's not a hospital practice at all.

We also know that not all physicians have the training and experience they need to relieve patients' suffering in the last year of their lives. These patients are indeed complex and unstable. This is not a basic medical practice.

It has been shown in several recognized scientific publications that palliative care physicians provide better and faster relief to patients, at a lower cost to the health care system. Despite this, there is still a serious shortage of home-based palliative care physicians in Quebec. This is clearly a medical desert that affects 80% to 85% of all Quebeckers at the end of their lives.

Home care clinicians were hoping that comprehensive palliative care would finally be implemented in all care settings, including at home, along with medical assistance in dying, with the implementation in 2015 of Quebec's legislation on end-of-life care. In order to meet the criteria of this legislation, every effort must be made to relieve the patient before proceeding with medical assistance in dying, be it physical or psychological suffering. However, priority was given to medical assistance in dying, not palliative care, which is absurd, because both are in fact—and I emphasize both—complementary and essential.

I will now talk about the accepted metric for measuring access to home-based palliative care and the rate of death at home. Quebec's home death rate is the lowest in the western world. It stands at 12%, compared to an average of 30% elsewhere in Canada and Europe. We are experiencing this on a daily basis in our overwhelmed emergency rooms. The data show that at least 70% of Quebeckers want to be treated and die at home. In Quebec, our family doctors devote a very significant part of their working hours to the hospital.

During our first home visit, patients very often talk to us about medical assistance in dying because they are suffering. Many don't even know that their prognosis is less than 12 months, especially in cases of non-cancer diseases. They tell us of their exhaustion and despair at the persistent suffering they are facing, after repeated stays in crowded emergency rooms. When palliative care teams are present at home, the suffering is managed intensively until it is relieved, and few patients choose medical assistance in dying.

Theoretically, the Act respecting end-of-life care stipulates that palliative care, as well as medical assistance in dying, should be available to all Quebeckers who want it, in all care settings, including at home. However, that is not the case in Quebec. Inequity in access to palliative care at home and medical assistance in dying persists, with most other provinces prioritizing home care over hospital care.

In Quebec, in 2022, the place of our death is determined by our postal code. We can and must do better.

In order to do so, we will need to get out of a health care model that is hospital-based and accept the fact that here in the West, the end of a life is a long journey which requires expert medical care and enhanced nursing.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Dechêne.

We will now go to Dr. James Downar.

Dr. Downar, you will have five minutes.

[Dr. James Downar, Professor and Head, Division of Palliative Care, University of Ottawa, As an Individual]

Thank you, Mr. Chair.

I really appreciate the opportunity to speak before you again, and I want to thank Dr. Dechêne for her comments, which were largely focused on home care. I will try to keep my comments focused on the hospital just so I don't repeat what she was saying, but I agree with what she was saying.

I've provided some material in my—

[Luc Thériault, Bloc, Montcalm, QC]

Mr. Chair, we have to do something about the sound. The volume is much too high here in the room and I can't hear the interpreters.

[The Joint Chair, Liberal, Marc Garneau]

Just stand by, Dr. Downar.

[Dr. James Downar]

That's no problem.

[The Joint Chair, Liberal, Marc Garneau]

Can we lower the volume in the room here? Very good.

I'm sorry, Dr. Downar; we're just making a little adjustment to the sound. It's nothing to do with you.

[Dr. James Downar]

That's no problem.

[The Joint Chair, Liberal, Marc Garneau]

Please carry on.

[Dr. James Downar]

I have small children, so I'm used to telling people to use their inside voices.

The main point I want to communicate today is that it's important to acknowledge that there have been important improvements in funding and in support for palliative care in many, many parts of the country. This is a start; it needs to continue.

I think a lot of the more acute crises that we are experiencing—

[Luc Thériault, Bloc, Montcalm, QC]

Mr. Chair, I am sorry...

[The Joint Chair, Liberal, Marc Garneau]

Hold on again, please.

[Luc Thériault, Bloc, Montcalm, QC]

Mr. Chair, I do apologize to the witness.

I do not want to make a fuss, but I can't hear the interpretation.

[The Joint Chair, Liberal, Marc Garneau]

We've lost translation momentarily. Hold on, Dr. Downar.

[Dr. James Downar]

No problem.

I can continue my presentation in French, if need be.

[The Joint Chair, Liberal, Marc Garneau]

Okay, we have it back on. Carry on in English or French, whichever you prefer.

[Dr. James Downar]

This is going to be a fun morning.

I think it's very important to point out that a lot of the crises we are experiencing right now in palliative care and palliative care provision are related a generalized lack of person power across the health care system, especially in home care. We need more nurses and we need more personal support workers in particular, but most importantly, we need to add to our labour pool in those areas without stealing from other areas. By simply throwing money at palliative care, stealing staff from hospitals or from long-term care, we're just going to move one crisis into another place, and we've done that a few times during the pandemic, so just be careful.

I think it's important to recognize that in a lot of the crisis, even before the pandemic, the lack of funding, the inadequate number of palliative care beds and the inadequate amount of palliative care home resources had a very important upstream effect on the health care system as a whole. Probably one in five or one in six patients admitted to a hospital were simply waiting to go to another facility, another bed that didn't exist. The result was a heavy contribution to overwhelming our acute care facilities.

The even sadder part is that the beds in all the places they were waiting to go are cheaper than the beds they were occupying in acute care. We just published a C.D. Howe report a year ago suggesting that if you just took the patients who were in the final 90 days of their life, and that's almost half of the patients who are at so-called alternative level of care, or ALC patients, in hospital and moved those people to the beds they were waiting for, you would save hundreds of millions of dollars a year while improving care for those patients and alleviating the health care crisis. The acute care crisis is predominantly an end-of-life care crisis, and that's what we really need to focus on right now.

I think I also want to highlight the importance of improving support and funding for palliative care research in this country. We have definitely had an increase in the previous couple of years. A large amount of funding was given to the pan-Canadian palliative care research collaborative and a large amount of funding was given to the palliative care institute in Alberta. These are great starts; please keep going, because we really do need to improve our ability to treat many types of suffering, and in particular existential suffering, which is very common. It is the number one factor in people requesting medical assistance in dying, and there is currently no proven therapy to address that type of suffering. It is very important. We have promising therapies; we just need some support to help do that research and start to advance our field.

Improving palliative care is a moral imperative for all Canadians, independent of medical assistance in dying. Only the tiniest minority of Canadians choose medical assistance in dying at the end of life, and 98% of those people receive or have access to palliative care. There are many people who don't have access to palliative care or don't get good palliative care. They're not getting MAID either. This really isn't about MAID; this is about improving end-of-life care for all Canadians.

Maybe I'll just say that I think there is probably an opportunity to answer questions, so I'll just bring my opening comments to a close with that.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Downar.

We'll now go to Mr. Hawkswell from TheraPsil.

Sir, you have five minutes. Please go ahead.

[Spencer Hawkswell, President and Chief Executive Officer, TheraPsil]

Thank you.

I'm a patient-rights advocate and the CEO at TheraPsil, a non-profit dedicated to supporting patients in accessing psilocybin, a substance commonly found in what's otherwise known as magic mushrooms that has an amazing ability to help people through the therapeutic process. It usually has been used in studies to help people with end-of-life distress.

I'm here today to advocate on behalf of a number of our constituents and patients who have the right to die in Canada with medical assistance in dying, but currently are being denied their right to try psilocybin. Specifically, I will refer to a patient, Janis Hughes, who is a 65-year-old woman in Manitoba with stage 4 breast cancer and an advocate with a two-year prognosis who in her own words states, “It is not only patronizing but an infringement upon my charter rights to have a Canadian government deny me access to psilocybin, a substance that has helped me with my palliative care treatment and end-of-life distress while allowing me at the same time only one alternative—medical assistance in dying.”

To relate what this has to do with MAID, it is about improving palliative care and adjunct or prior therapies.

The last time psilocybin was brought up in this meeting, it was shot down as a pseudo-science for its lack of research and not having much to do with medical assistance in dying. However, first in relation to the research, I might remind everyone that there is actually quite a bit of research behind psilocybin, specific research coming out of Johns Hopkins and NYU, that far surpasses much of the research that was done for medical cannabis and perhaps medical assistance in dying. These were both legalized on the basis of human rights, and that is what we are talking about here today—a human rights issue in need of compassion.

Second, to answer how MAID is connected to the psilocybin issue, the people whom I represent, such as Ms. Hughes, are directly affected by this committee. Psilocybin access is currently available through the special access program to those who have failed every other treatment, leaving MAID as one of their only alternatives if psilocybin is not allowed. This represents a woeful incongruity in our health care system. I believe that if this committee is made aware of this incongruity, they may see a situation in which we're allowing people to die before they're able to try substances such as psilocybin that might help them alleviate end-of-life distress and help with their palliative care before MAID.

Where is the compassion? Why is there not a more patient-centred approach when constituents and stakeholders of the actions of this committee are being told that they are being denied prior or adjunct treatments to MAID?

I am personally a big supporter of medical assistance in dying and have agreed with everything I've heard so far. We must move it forward quickly, but we must also see it in the context of palliative care in Canada, especially where patients are being denied access to other therapies.

Bill C-14 and Bill C-7 required establishing this committee in the House of Commons and Senate to conduct a comprehensive review of the Criminal Code, MAID provisions and their application and issues relating to mental illness and the state of palliative care in Canada. I believe that we are talking about the state of palliative care in Canada.

I am here to defend Canadians with mental illness and those struggling to receive adequate palliative care. Our health care system prides itself on being patient-centred and giving people the right to die after the Carter proclamation—if you don't have the right to die, then whose body is it? At the same time, it will limit these same Canadians by expanding MAID while ignoring issues related to adjunct or prior treatments, such as psilocybin access.

I believe that this is unconscionable. Given the constituents affected by this committee, this review will be subject to broader options relating to medical death while their request to seek treatment such as psilocybin to better their quality of life is being ignored.

I don't believe that the members of this committee should let such a thing happen. I'm asking for your compassion and support for people like Janis. I believe that Canadians who have the right to die should similarly have the right to try psilocybin and perhaps other controlled substances prior to MAID.

I believe, however, that we should start with psilocybin access, given the robust research. We should expect this to increase to other treatments and substances that may hold other grounding.

I'm urging this committee to add in its report that regulations for medical psilocybin access for those seeking MAID should be given a priority and that it should be a possible prior treatment for a number of Canadians seeking this. I do not intend in any way to slow down any of the other work that is being done on MAID and on other issues; rather, I encourage the expansion of other alternative treatments at the same time. Again, I am referring to psilocybin.

I am here to defend people like Ms. Janis Hughes and hundreds of other patients who have reached out to our organization and who are feeling disheartened that we might make MAID available in as little as three days while someone like Ms. Hughes has waited seven months for access to psilocybin and has been forced to break the law to access it.

I do not believe that this reflects well upon the state of palliative care in Canada, and I believe that, similar to the comments made by Dr. Downar, this is simply a reflection of other therapies—adjunct and prior therapies—that need to be made available while our MAID committee is expanding possible options for medical assistance in dying.

Please consider it. Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Mr. Hawkswell.

We'll now go to questions, and I'll hand it over to my co-chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin (Senator, British Columbia, C)]

Thank you, Mr. Co-Chair.

Thank you to our witnesses for your testimony today.

We'll go into our first round of questions. We will begin with Madame Vien for five minutes.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Thank you very much, Madam Chair.

Hello, everyone. I would like to thank the witnesses for being here this morning.

Good day to you, Dr. Dechêne.

[Dr. Geneviève Dechêne]

Hello.

[Dominique Vien, Conservative, Bellechasse—Les Etchemins—Lévis, QC]

Welcome to our committee.

I read a very interesting article about Nova Home Care in Verdun that you authored and that was published, if memory serves, in 2021.You brought up a fascinating point and I will come back to it later.

To start with, you have expressed a lot of doubt about access to home care. You spoke about how this access was inequitable. You did not pull any punches by stating that the place of our death is determined by our postal code.