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.
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.
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.
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 and Bill 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.
Thank you for that fantastic question.
In Quebec, we have local community service centres, called CLSC. They are wonderful places, which offer excellent home care. They have nurses, occupational therapists and physiotherapists on staff. Every category of health professionals is represented, apart from doctors. It's absurd, I know.
For purely political reasons, and probably union-related ones, for 35 years now, doctors have not been included in this exemplary multidisciplinary health care model which is the CLSC. However, in the case of palliative care, we can't offer it without doctors. I am not talking about a person's last seven days on earth, but rather of palliative care, which is comforting care given during the last year of life, as I stated earlier.
For example, let's say we have a person who suffers from heart failure, which patients, who frequently find themselves choking, sometimes call “water on the lungs.“ The medication dosage has to be changed constantly, whether administered intravenously or orally. We change the dosage from one day to the next, and sometimes twice a day. It can be done over the telephone, or during one of our visits, so that we make sure that the patient enjoys a good quality of life and does not choke.
What can our wonderful home care nurses do...
Thank you for that excellent question.
As a practitioner of family medicine, you can have an enhanced practice. You don't have to go back to medical school, but rather undertake a two to three month-long practicum, and then be supervised by your peers, i.e., doctors who do this type of work, for a three-month period. After these two three-month periods, a doctor is able to practise in a different area than family medicine.
I also have my own practice. My pager does not buzz at 2:00 a.m. for my practice patients. They are not hemorrhaging, they are not choking and they are not crying out in pain at 2:00 a.m. They are in a very stable condition and suffer much less, overall. I would say that it's almost a hospital practice in a home setting.
When we work at the hospital, we are woken up at night for our patients who have been hospitalized. The same thing goes for home-based palliative care. I really want to underscore this point: patients whose condition is unstable and who need complex medical care need to have a doctor on call 24 hours a day, otherwise they will just keep on going to the ER.
I would like once again to say thank you to Dr. Downar. This is the biggest medical crisis the health care system is facing everywhere in Canada.
If only you knew, Dr. Downar, how much worse it is in the province of Quebec.
Our statistics on deaths in the home show this, because we only have 12% of deaths taking place in the home. It is a very low percentage, compared to what we see elsewhere in Canada, which is 30%.
If I may, I would like to add some quick comments on the situation outside of Quebec. There are problems everywhere in Canada, but we have a few ways of filling the gaps in the system.
Here in Ontario, there are many teams and various models to support patients at home. You asked what it would take to help those patients at home. As Dr. Dechêne said, oftentimes, there aren't enough doctors in the community who make house calls. It is therefore important to have a team which has the necessary skills to meet patients' needs. That could be a nurse practitioner.
For example, nurse practitioners or nurses who have the necessary skill set are able to meet the needs of patients. A family doctor can be supported by a consultant specialist who would be on call to give advice in order to help manage certain situations. In the case of patients whose needs are more complex, teams of doctors specialized in palliative care can make house calls. Often, though, these specialists are only present in urban communities, as you stated.
There are many models. As Dr. Dechêne said, it is important to find models that offer rewards. It is sometimes difficult for doctors to earn a good living when they make house calls, because house calls don't pay very much. Renumeration schemes do exist, however, especially in Ontario.
Correct me if I'm wrong or if you don't agree with what I'm going to say, but in the end, medical assistance in dying should be seen as part of the continuum of care.
People sometimes say that patients request medical assistance in dying because palliative care is missing. A dying patient does not have access to palliative care and therefore requests medical assistance in dying.
But palliative care, when seen as part and parcel of accompanying a person toward death, and I would also ask that you define this notion, could be such that at a given time, a patient may be ready to let go. Because that patient has received good palliative care, has been well supported on his or her journey toward death and is completely at peace, that person could then decide that today is the day that he or she lets go and would like to depart this earth.
The example I've given you does not constitute a failure of palliative care. It could be seen as a success story for palliative care because, all of a sudden, the patient is completely at ease with letting go and requests MAID.
Do you agree with this?
Thank you, Madam Chair.
Thank you to all of our witnesses for appearing today.
Mr. Hawkswell, I'd like to direct my questions to you if I may. It's good to see you join our committee today. I really did appreciate how your comments were focused on a patient-centred approach. We, as a committee, have previously had Dr. Valorie Masuda appear before us, who's one of my constituents. She's a palliative care physician and she has seen first-hand with her patients how psilocybin in a controlled environment has definitely relieved their anxiety, the existential dread they feel when they are approaching the end of their life, and has allowed them to focus on that part of their life with friends and family present and with a much more sound mind.
You mentioned the research from Johns Hopkins. I'm just reading their website. I'll quote it:
Research to date [demonstrates] safety of psilocybin in regulated spaces facilitated by medical [teams] over a series of guided sessions; and as a part of cognitive behavioural therapy, psilocybin helps in reducing anxiety in some cancer patients, and in facilitating even smoking cessation for some.
Can you add a little bit more to what that research is pointing towards, and later on would you be able to submit some of that research to this committee so that we can consider it as we're approaching our final report?
I can absolutely submit some research and opinion pieces from the patients and doctors if you would like. I believe they're very helpful and outline more patient-centred cases in which both patients and health care professionals, as well as families, have been helped by this.
I will just add a bit more on the use of psilocybin and what we've seen in close to 100 treatments that our organization has helped facilitate with doctors such as Dr. Val Masuda.
Psilocybin, the compound, alone does not alleviate much of the end-of-life distress. It's commonly referred to as that, but it is the combination of anxiety, depression and hopelessness that a patient faces when they're told that they're going to die. Again, this does not affect every cancer patient, but some of the literature reviews we've done—which we will also try to include—show that about 2,800 Canadians every year fall into this category of treatment-resistant depression or anxiety due to an end-of-life diagnosis.
What the psilocybin does, coupled with psychotherapy, which is what you're referring to and what Johns Hopkins was referring to, when it is conducted with clinicians in a safe space—and that space can be the patient's home, where many of the treatments have been done—is to aid in the psychotherapeutic process. It allows people to let their guard down. In many cases, it allows the therapist to actually do the work that they need to do.
For many people the psychotherapeutic process is hindered by lies that people tell themselves and by fears. In many cases, the patients coming out of these experiences are reporting that they are no longer afraid of death or that they feel a oneness with the universe. It is essentially years of psychotherapy packed into a single session with the help of medicine.
I have heard these claims too, but I don't think there's really any basis for them. I think in most cases in many parts of the country, palliative care funding is increasing, and increasing quite substantially. My own division in Ottawa has roughly doubled in size, including a large increase in salaried positions over the past few years. I think that has largely been the case in much of Ontario.
I know that it's not the case across the country, and I'm not claiming that it is, but definitely there has been a substantial increase, I think, in funding for staff and funding for beds, which unfortunately we're just generally missing staff for and can't always fill. That's super-important to state.
In terms of resources and our resources being stolen, I think it's also important to remember that if somebody is at end of life and is suffering, and they are getting resources, I find it hard to understand why people would say that it's an inappropriate use of palliative resources. I'd really regret if any member of the palliative care community would say that it's stealing resources. The resources belong to the patients. They are patient resources, not my resources and not anyone else's resources. They are for them. If they are nearing the end of life and suffering, and the resources go to them, good. The fact that they have chosen MAID shouldn't make them ineligible for resources.
We will now resume our work with our second group of witnesses.
I would like to make a few comments for the benefit of our new witnesses. These are housekeeping rules.
Before speaking, please wait until one of the co-chairs recognizes you by name.
This is a reminder that all comments should be addressed through the joint chairs.
When speaking, please speak slowly and clearly. This is for the benefit of our interpreters. Interpretation in this video conference will work like an in-person committee meeting. If you're remote, you have the choice at the bottom of your screen of floor, English or French. The little globe is the interpretation button. When you're not speaking, please keep your microphone on mute.
With that, I would like to welcome our witnesses for the second panel. Again, we're looking at palliative care.
We have online with us Dr. José Pereira, professor and the director of the division of palliative care at the department of family medicine at McMaster University. We have in the room with us Mr. Mike Kekewich, director of the Champlain Regional MAID Network and the Champlain Centre for Health Care Ethics.
I'm not sure I see him yet, but we're hoping to have Dr. Louis Roy.
Dr. Roy represents the Collège des médecins du Québec. He should be arriving any minute now.
With that, thank you all for joining us.
We will start with opening remarks from our three witnesses. We will start with Dr. Pereira. Each witness will have five minutes for opening comments before we go to questions.
Dr. Pereira, you have the microphone for five minutes.
Thank you, honourable chairs, and thank you to the committee for the invitation to discuss palliative care in Canada.
As you've heard, I'm professor and director of palliative care at McMaster University, and I'm also co-founder and scientific officer of Pallium Canada.
I have dedicated most of my career to improving palliative care in Canada and abroad, and I've worked in different clinical, education, research and leadership roles in several Canadian jurisdictions. I am pleased to appear before you to share my experiences in the science on palliative care.
I'd like to briefly highlight three areas related to palliative care in our country: access and availability, education, and funding.
While we have seen noteworthy improvements across all three areas in the last two decades, many gaps still exist. We cannot say today that all Canadians have access to palliative care. In fact, many still do not. The good news is that there are examples of excellence in all these areas across the country, and there are solutions as well.
Let me start with access to palliative care and palliative care services.
On average, only about 30% to 50% of Canadians who need palliative care have access to it or receive it, whether it is delivered by palliative care specialists or by other health care professionals. On average, only about 15% to 25% of patients have access to specialist palliative care teams to address more complex needs. In many rural and remote areas of the country, there is no access to specialist palliative care, and many of the health care professionals serving those populations, just like their urban colleagues, lack core palliative care skills.
A growing body of research shows that palliative care should be initiated early in the illness, not just in the last days or weeks of life. It improves quality of life and reduces anxiety and depression, caregiver distress, hospitalizations and, importantly, health care costs.
Despite this, we consistently see palliative care activated very late in the illness. I see that often in my clinical practice, and studies confirm this.
Whether you'll get the palliative care you need depends largely on where you live, what you're dying from and how close you are to death. Some areas have excellent access; others have almost nothing. You're also less likely to receive palliative care if you're poor, indigenous, homeless or incarcerated.
The availability of access to key palliative care services is still a patchwork across our country. For example, experts propose at least 10 palliative care in-patient beds for every 100,000 inhabitants. This includes palliative care units and hospice beds. Many jurisdictions across the country do not attain these standards. Some do; many don't. Many hospitals across the country do not have sufficient palliative care physicians and nurses, and many communities do not have adequately staffed palliative care specialist teams to support family physicians and home care nurses to provide home and community-based palliative care.
The COVID-19 pandemic has had a major impact on the home care workforce. We struggle to discharge patients from hospital, because there is a lack of home care with palliative care supports. Canadians need assistance in living and supports. This is a crisis.
The pandemic has also highlighted chronic deficiencies in the integration of palliative care into long-term care homes, but again there are centres of excellence.
In the area of education, we have too few palliative care specialists in the country and too few training positions for new palliative care specialists. However, all the palliative care needs of a population cannot be met by palliative care specialists alone.
We must train our professionals in primary care and across many specialty areas to provide a palliative care approach. This has been highlighted in the government's 2018 framework on palliative care.
Many learners across the health professions are still graduating without core skills. In Canada, for example, fewer than one in three medical students completes palliative care clinical rotations during their training. In residency training, only 60% of family medicine trainees completed clinical rotations, and the numbers are low in other specialty areas.
Many practising professionals in primary care and across different specialty areas do not have core palliative care skills. Interestingly, in a study of 10 OECD countries, only 42% of primary care practices in Canada felt prepared to provide palliative care. The number was 80% in the U.K.
To help address this gap, Pallium Canada, a non-profit organization that I co-founded 22 years ago, has trained over 40,000 health care professionals across the country on the palliative care approach. We also now train carers and help build compassion community programs. This still represents less than 6% of the workforce.
Funding is needed to spread these initiatives. The public also needs to be educated on what palliative care actually is and what it can offer.
This finally brings me to funding. Sustained and adequate funding by federal, provincial and territorial governments is needed to ensure access to palliative care services and education. Too often, it's piecemeal.
We applaud some provincial governments, such as the Government of Alberta, which has recently invested in palliative care training en masse, and the Nova Scotia government, which is training PSWs on a large scale.
Federal funding is required to provide the necessary infrastructure and resources to implement the key priorities outlined in the “Framework on Palliative Care in Canada”.
Thank you very much, honourable chairs.
Thank you very much, Mr. Chair and members of this committee.
Good morning, and good morning to my fellow panellists as well.
I'm the director of the Champlain Regional MAID Network here in Ottawa. We provide care to patients throughout the Champlain region, going from roughly Pembroke all the way to Hawkesbury. I'm also the director of the Champlain Centre for Health Care Ethics, both of which are hosted at the Ottawa Hospital here in town.
I'd like to make a few comments on what we're presently experiencing with respect to MAID, and then I'll talk a little bit about palliative care, given that's the subject of today's discussion.
First I want to comment on the most recent data from Health Canada, which shows that MAID continues to grow quite substantially from year to year, now representing 3.3% of deaths in Canada. We're seeing the same trend in our region and in this province, and it's very clear that more and more Canadians are inquiring about and accessing this service. I think we could continue to expect those numbers to grow as eligibility changes over time in terms of the law.
I do want to take just a quick moment to formally acknowledge the hard work of the clinicians across the country who are supporting patients and families through these very difficult decisions, particularly during this pandemic response period.
Ultimately, physicians; nurse practitioners; MAID navigators, as they're called, or coordinators; and other dedicated health care professionals are critical to the delivery of compassionate and high-quality care to patients who are requesting MAID.
I believe it's worth noting quickly that those who are actually assessing patients and providing MAID may not be as big a group of clinicians as people might think. In 2021, the total number of clinicians who provided at least one MAID procedure was 1,577, which initially sounds like a fairly comfortable number, but 35% provided only one MAID procedure, while just over 16% provided more than 10.
This is a challenge. It's a lot of stress on this dedicated group of clinicians. There were over 10,000 MAID provisions in 2021, and obviously there were a lot more assessments of patients moving through this process. There continues to be a substantial need for service from this group of clinicians.
In terms of palliative care, I would like to make a few comments.
Obviously I agree with the previous panellists. I had the opportunity to sit here and listen to them. Palliative care is an essential and critical service for Canadians and particularly for those who are considering MAID. I strongly believe—and have for many years—that MAID and palliative care are not mutually exclusive.
In my experience, many patients who are requesting MAID have historically received, or are currently receiving, very high-quality palliative care services that help them manage their suffering in a variety of ways. Many patients who are not receiving palliative care when requesting MAID are referred in that direction to give them the best possible care, regardless of what decision they ultimately make. Even for patients who ultimately do receive MAID, it's often the case that they continue to receive palliative care up until their final days to help alleviate their suffering, because MAID providers primarily act as consultants; they don't take over all of the responsibilities for caring for patients, in most cases.
I was encouraged to see in federal reporting over the last number of years that over 80% of MAID recipients had in fact received palliative care, with many of them receiving those services for one month or more, which I think is noteworthy.
In 2021, palliative care was identified as being accessible to 88% of those who received MAID in Canada, which I think is very encouraging.
Other localized studies and reports on this topic show, with some variability, that most patients requesting MAID were receiving palliative care or had access to it. I think it may also be the case that the introduction of the waiver of final consent, which was part of Bill , might have the effect of patients continuing to receive palliative care up until their final days, because historically some patients had been concerned about the requirement that they maintain capacity at the time that MAID is ultimately provided.
Obviously I'm encouraged by the data. I think there's still room for disagreement in terms of what would represent adequate access to palliative care for these patients; I don't feel particularly qualified to answer that question, but I believe that there is probably no such thing as too much access to palliative care services, and I think that probably transcends the conversation around patients who are requesting MAID, because it appears that they actually have quite good access to those services.
I will stop there. I am happy to receive any questions after the next panellist.
I'm here to present the position of the Collège des médecins du Québec, where I've been working for a year and a half as an inspector in the Professional Inspection Division.
In light of the progress being made in granting access to medical assistance in dying and developments over the past few years, the Collège struck a working committee made up of clinicians. The committee began reflecting on MAiD in April 2021 and submitted its report in December 2021. The report was then endorsed by the board of directors.
I will now outline the findings and recommendations of the committee and the board.
First—and this has to do with the federal government, but also the Quebec provincial government— the Collège would like to note the harmonization issues between Quebec and Canadian law. The mismatch in choosing certain words causes confusion among health care providers.
For example, the Canadian legislation talks about an “illness, disease or disability”, while the Quebec legislation does not. It's causing many issues when it comes to interpreting the law. In addition, it could disqualify people who would normally be entitled to MAiD, based on which side of the Ottawa River they call home.
With respect to access to care, the working committee first looked into access to MAiD for persons with neurocognitive disorders, or progressive dementias. The committee and the Collège's board of directors supported advance requests when an individual becomes aware that they inevitably risk losing their faculties due to a progressive illness. People must therefore be able to submit an advance MAiD request, even if that means it is made several years prior to taking any action.
The second area for consideration had to do with MAiD individuals presenting a mental health issue only. Once again, the board of directors endorsed the recommendation that MAiD should only be available to people with a serious and persistent mental health condition for which treatment has been attempted and for which the individual sees no other outcome. Of course, this requires further thought about how to implement it. We need to make sure that the law is interpreted correctly and access to care respects people. We also need to make sure that all the necessary and possible care has been offered to an individual with mental health issues. In our current health care system, we know that access to mental health care can be problematic.
The third area for consideration was access to MAiD for emancipated minors between the ages of 14 and 17.
With support from the board of directors, the committee recommended that emancipated minors be able to apply for MAiD in conjunction with their parental authority or guardian. The pain that these young people may suffer must be taken into account; the suffering may become intolerable and it may no longer make sense in certain situations. The same is true for babies from birth to one year of age who come into the world with severe deformities and very serious syndromes for which the chances of survival are virtually nil, and which will cause so much pain that a decision must be made to not allow the child to suffer. In that respect, the committee highlighted the Netherlands' and other countries' experience. This avenue could be explored.
Finally, the committee considered the burden of living some elderly people carry. In geriatrics, we call it failure to thrive. For these individuals, life no longer makes any sense. Among other things, the fragility of life, diminished physical capabilities and existential pain become intolerable burdens. The committee and the Collège endorsed the idea of undertaking thorough reflection on this.
This is a topic that remains sensitive for the public and one for which we currently do not have clear answers on our side. Yet we want to be able to continue to have a joint reflection with learned societies and the general public to see under what circumstances this may be an option.
So I've presented to you here quickly, in a few minutes, the result of the reflections of the college's working committee, reflections that have been endorsed by its board of directors. The committee's work lasted six months, but it followed many years of reflection and work around this topic.
I am available to answer questions from committee members and provide clarifications.
Yes, I have, and I've also had colleagues share similar experiences. I'll give you an example.
I was working for two years in a palliative care unit in my region, and in the palliative care unit, MAID is done. Patients are referred from other hospitals and other settings to the units to receive MAID. There were some occasions on which I saw patients I thought could benefit from palliative care, in that the treatment, the palliation, they received was suboptimal, and we could optimize it, but I was made to feel that I was obstructing access to it.
I think that does happen, and if you speak to colleagues, you will hear those examples.
That reminds me that I think a previous speaker said that most people who are requesting MAID are receiving palliative care. There are examples in which they arrive in palliative care units, and therefore on paper they are in a palliative care setting. However, they are not receiving palliative care; they are awaiting MAID.
I think we need to look at those numbers a bit more cautiously and closely.
Yes. It's not only professional societies or associations of palliative care; it's also the World Health Organization that doesn't see MAID as part of it.
I believe that there is a distinction between the two. I understand that in a democratic society one can have access to it, but it doesn't mean that they have to be associated.
What I've seen is confusion around the two. For example, a few weeks ago I had a patient who had very advanced dementia and was on hemodialysis. She was in the final stages of her life and was still receiving hemodialysis. I met with the family and said that we needed to consider stopping hemodialysis, since it was not being helpful anymore. The family were very upset because they felt that I was promoting MAID. I had to spend a lot of time explaining that this is not MAID and we don't do MAID.
I also think that linking the two causes confusion. We are trying to move palliative care to earlier in the illness trajectory. This has been known since 2002. There's an emerging body of evidence showing the benefits of palliative care that is started months before the end of life. I think associating it with MAID keeps linking it to the very end of life.
I have seen resources being diverted. In one of the peripheral areas of the region that I live in, there have been nurses and nurse practitioners assigned to do MAID assistance, and therefore not enough health care professionals to assist patients for their palliative care needs and to address palliative care.
A study of world rankings has been published recently. There was a large Economist study done and published in 2015. Canada stands at about 10th or 12th on the list overall, but we start dropping in certain areas. For example, in funding for private care resources, we've dropped down to the 20th spot, so there's room for improvement.
Many other jurisdictions, such as the United Kingdom and Australia, put a lot of effort into ensuring they have enough specialist palliative care services and specialist palliative care teams, and they also build up what we refer to as the primary part of care. In other words, all health care professionals caring for patients with cancer, heart diseases, lung diseases and renal diseases, etc., have those core skills—
Thank you for that question, Mr. Arseneault.
In this case, I will put on my clinician hat. That stage of my career ended when I joined the Collège des médecins du Québec, but I still had a long career as a clinician. I have also worked extensively in palliative care, participated in the implementation of medical assistance in dying, and administered medical assistance in dying to many patients myself.
To answer your question, I can speak from my experience as a clinician in Quebec, particularly in Quebec City, where I was, among other things, head of palliative care at the university hospital. The vast majority of people, as you said based on your numbers, had access to palliative care when they requested medical assistance in dying. You really have to look at it as a continuum of care. When medical assistance in dying was implemented in Quebec, we put a lot of emphasis on the fact that palliative care must be present.
It should be remembered that legislation was passed in Quebec a number of years ago, so that palliative care would not be optional in institutions. All public institutions must have a program or plan to provide palliative care, which is not the case everywhere in Canada and which is completely different from what I had experienced some 15 years before the passing of that legislation. I had even been told by someone in an administrative position that my palliative care business was irrelevant to the mission of their institution—
Thank you, Madam Co-Chair.
Dr. Pereira, I'd like to start with you. In the previous panel, we had a witness from TheraPsil who was talking about the research that's going on in Johns Hopkins University into psilocybin therapy used in a very controlled environment with cognitive behavioural therapy. One of my own constituents, palliative care physician Dr. Valorie Masuda, has been granted access to this through special exemptions from Health Canada, and she has reported remarkable success in helping patients who are in palliative care overcome their anxiety.
Do you have any thoughts to offer on this research?
There have been calls not only for additional funding into the research, but also to tackle Health Canada's overly complicated and restrictive rules. I want you to answer this in the theme of a patient-centred approach, if we are trying to help patients at the end of their life in palliative care meet their end in a safe and controlled way such that they are not filled with anxiety.
Do you have any thoughts on this?
Mr. Chair, I'd like to thank the member for that excellent question.
I think what that illustrates is that contrary to what a previous panellist said, which was that there are no solutions or approaches to addressing existential distress, there are, and there are growing numbers of them. One of them in this class of medications is psilocybin.
I've been monitoring the literature coming out, and the results are quite amazing for many persons. They get significant relief from existential suffering as a result of that therapy. Many people as well benefit from approaches such as dignity-conserving care developed by Professor Chochinov.
I would argue that yes, there are approaches to address existential distress. I've seen that in my own practice with my own teams, and it makes a difference, so I think we have to be careful about making assertions that there are no treatments or approaches. Obviously there's not the panacea yet, but we are stretching out. We're improving every year on how we can address these needs.
I am happy to be taking the floor after my colleague Mr. MacGregor because his question is the same as one of mine.
It is increasingly noticeable that the public and all professionals are receiving a lot of information about the implementation of the medical assistance in dying program. However, when I was practising medicine, I noticed that the population knew nothing about palliative care. People who were offered palliative care were resistant to it.
Today, palliative care is still contrasted with medical assistance in dying. What could be done to educate the public about what palliative care is, as is done for medical assistance in dying?
How could provincial colleges of physicians better educate professionals about palliative care, so that they can advise people about either option when the time comes?
Dr. Roy, has the Collège des médecins du Québec ever thought about that?
Thank you, Senator Mégie.
Yes, a lot of thought has been put into that.
On that note, I would say that the problem of information about access to palliative care goes back a long way. It also comes from the fear of talking about death, of talking about topics that are not easy.
I think the shortcut to medical assistance in dying was taken not because it was necessarily easier to talk about it, in terms of public information, but because it was something new for the press and the media. There was something new to put out there, whereas when you want to talk about palliative care, you have all the problems of what you are going to say, who you are going to say it to, and how you are going to say it.
On the public side, we really need some very targeted, but also well-organized, press campaign elements to explain to people what palliative care is.
I noticed in my long experience in palliative care that the best ambassadors to talk about it well are the families and loved ones of people who have received it. They are the best people to do it. They can say that their mother or aunt received palliative care, that it was a positive experience, and that this person received care, comfort, and relief.
On the physician side, Dr. Pereira talked about this. Medical schools are getting into it, but they definitely need to continue to [technical difficulties]. Obviously, all of this fits into an increasingly heavy curriculum in medicine where it is difficult to tell future medical students that they are going to have to add one or two years of study to successfully cover everything. We need to successfully condense everything even more.
Obviously, our medical students need to be confronted with the fact that everyone is going to die someday, but they also need to be exposed to palliative care during their training.
Thank you to the witnesses.
Before I ask my questions, I would ask the chair if he could request that Dr. Pereira provide this committee with a written report supporting his opinion that, one, people are being provided MAID instead of access to palliative care when they want palliative care; two, the data that shows that people who are receiving MAID have received suboptimal palliative care; and three, that resources are being diverted from palliative care to MAID provisions outside the usual ongoing annual reallocation of resources in the health care system.
I have questions for both Dr. Kekewich and Dr. Roy.
Dr. Kekewich, you raised a concern about the possibility of a real shortfall in the health care workforce that can provide MAID and palliative care. Both are very important. How can that human resource problem be addressed by the federal government? Can you think about whether targeted health care transfer funds might be part of that solution?
Dr. Roy, would regulatory bodies have within their jurisdiction the ability to require that MAID providers must have completed a national training program in MAID assessment and delivery?
Go ahead, Dr. Kekewich.
That's an excellent question. I think it's something we've struggled with, quite frankly, in terms of what the strategies look like.
I think one of the interesting things about MAID is that most clinicians who are providing MAID are not doing it full time; they are doing it in addition to other work that they're committed to, so it has to be rewarding for them. It has to be meaningful for them.
I think certainly the volumes are one thing, in terms of their increase over time, and the complexity may also increase over time, as new patient populations start requesting it. I think there have been some innovative attempts to develop MAID coordination services that really support clinicians. It can be very administratively burdensome to have a large caseload of patients, for example.
I think focusing on those types of strategies, so that there's a team that's supporting patients—not just the clinician on their own, but a team of nurses, social workers and perhaps other specialists who could be available to give support—would be helpful.
Thank you for your question.
If you don't mind, I will continue in French to make sure that I make my [Technical difficulty—Editor] more clearly.
With regard to palliative care, obviously, we have come a long way, as there was initially no training. Initiatives were organized locally all over. At the national level, a working group is setting up a training program on medical assistance in dying for physicians and nurse practitioners. This program, whose modules I am helping review, is expected to be in place by the spring of 2023. In terms of training physicians and nurses in medical assistance in dying, I think the pieces are gradually falling into place. It should have been done before, but at the very least, work is being done.
One thing remains to be done and remains a very worthwhile element to me. In my field, very few physicians are opposed to medical assistance in dying. A lot of physicians say that they don't feel capable of administering it, but they understand their patient very well and so they will redirect them to someone who has the training and feels physically, psychologically, and morally ready to do it. So there is that dichotomy, but overall I would say that—
That's fine. Thank you for providing that additional information.
With that, thank you, Dr. Pereira.
Thank you, Dr. Roy.
Thank you, Mr. Kekewich, for appearing in front of the committee this morning. We very much appreciate it and are continuing our analysis of the theme of palliative care in the context of medical assistance in dying. Thank you very much for your appearances this morning.
With that, for the committee, our next meeting is Tuesday, the 18th. We won't be here next week, of course. We'll continue with the study of palliative care.
Thank you very much.
This meeting is adjourned.