Medical Assistance in Dying Committee on April 25th, 2022

[Marie-Francoise Mégie, senator, Québec (Rougement), ISG]

Thank you, Mr. Chair.

Thanks to the witnesses for being with us today.

Dr. Pageau, do you practice medical assistance in dying?

[Dr. Félix Pageau]

No, I don't practice it.

[Marie-Françoise Mégie]

Right.

What would you say to someone who is 55 years old who has cared for their parents throughout the process of the evolution of dementia, up to the final phase, who says they don't want to go through the same thing and decides to make sure they can receive medical assistance in dying once they are unable to recognize their children, for example?

What do you do when a person confides this in you? Do you try to dissuade them? What do you say to them?

[Dr. Félix Pageau]

It's interesting that you asked me the question, because I had a discussion about this today with my nurse. Her work consists of looking after people with dementia. Her argument was that we don't have adequate care. She doesn't want to depend on malevolent people, who are sometimes in long-term care homes, or LTCHs, or in homes for the aged. Her fear was of finding herself in a context of malevolence, that people would give her poor care, that they would have contempt for her or not offer her adequate care.

In fact, my patients are all over age 65. However, it is frequently the case that our patients' children make this kind of request. Often, they have been looking after their family members for a long time, they have become very worn out and they see dementia as a pretty heavy burden to bear. They don't want their family to experience the same thing. I understand that.

The care to provide for persons suffering from dementia calls for a lot of resources and involves very specialized care. There are different types of dementia. There is what some call “happy dementia”, which doesn't call for a lot of care. However, when behavioural problems and psychological problems are associated with dementia, it calls for very specialized care. People who are not trained in this field may indeed find the situation extremely difficult. They project it onto themselves and tell themselves that their family members didn't receive the care they needed and they don't want to experience that. That is where the fear of decline comes into play, that I was talking about a little earlier. They decide to request medical assistance in dying for themselves, because they internalize that vision of ageism and ableism. They don't want to be disabled or aged in Canadian society as it now is and they especially don't want to suffer from a mental illness in Canadian society as it is now. Canadian society is in fact very stigmatizing, and even contemptuous, for people who have challenges in their daily lives.

In geriatrics, my area of expertise, and in geriatric psychiatry and palliative care, if people receive good care, they could be well and get better and no longer be seen as a burden by their family. The family could then regain its place, whether we are talking about children, spouse or family caregiver. People should not have to carry this mental load on an everyday basis.

I understand this fear of decline and desire to avoid it, but as I told my nurse, we have to fight and talk to the government to get improvements to geriatric care and geriatric psychiatric care and palliative care in Canada. Improving care would make it possible to reduce the fear of decline that people in their fifties often talk to us about.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Pageau.

Next is Senator Kutcher.

Senator Kutcher, you have three minutes.

[Stanley Kutcher, Senator, Nova Scotia, ISG]

Thank you very much, Mr. Chair. Thank you to the witnesses.

My question is for Dr. Green.

We understand that your organization is working to create a national MAID assessment and intervention program that will have the impact of standardizing MAID delivery across Canada, and additionally, through the process of certification, create comprehensive and high-quality standards for health providers who deliver MAID. Could you please tell us more about this work, including what organizations are involved, who is providing the certification and what the certification will achieve? Do you think that this outcome will, over time, create a recognition for MAID provision similar to that which has been recently developed and is now available for palliative care?

[Dr. Stefanie Green]

Thanks for the question.

CAMAP is particularly proud of our development of this particular program. This is a national program that is federally funded by Health Canada. It is a multi-year program. It is meant to help clinicians who are new to the field as well as those who are already in the field looking to expand their skills.

This is a very large program. I think our team kickoff included about 90 invitations. There are currently, from the ground up, eight working groups. They are diverse from a geographical point of view, from a medical and nursing background point of view and from an EDI lens. They are each working on a module that will contribute to the overall curriculum.

These working groups are accountable to an executive committee of leaders of each of those working groups. They are then overseen by both the CAMAP board and, perhaps more importantly, a national stakeholder committee that is made up of 17 different national member organizations, each of which is a significant stakeholder in MAID in this country. I will not name all 16 of them for you, but they include the Royal College of Physicians and Surgeons of Canada, the Canadian family practitioners association, the CNA, rural physicians, indigenous representation, palliative care, psychiatry and the Collège des médecins du Québec. It's quite a diverse group. There's quite a bit of oversight. We have a project team of three full-time staff.

Again, this project will last until 2025. At the end, we will have seven modules that are online, off-line, synchronous, asynchronous, bilingual, easily accessible and fully accredited by the national organizations, including the family practitioners, the royal college and the nursing association, which have already committed to helping us achieve that proper accreditation.

We are not looking at credentialing. We will not be applying letters after the names of the people who complete this course, but they will be able to point to this curriculum to say that they have completed it. We hope that this will in fact help with the standardization issue across the country, which is significant at this point, and help build confidence in both the clinicians and the public.

I hope I have answered your question.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

Senator Dalphond, you have the floor for three minutes.

[Pierre Dalphond, Senator, Quebec (De Lormier), PSG]

Thank you, Mr. Chair.

My question is for Dr. Pageau.

Dr. Pageau, since you work in geriatrics, your youngest clients are my age. In the case of a person who has made advance medical directives and who, by definition, is no longer able to make decisions for themself, substituted consent is given. The physician speaks to the family.

Would you, yourself, refuse to speak to the family and to act on advance medical directives?

[Dr. Félix Pageau]

I am not opposed to it, because advance medical directives are the law. So I have to follow them. I comply with the law, but I still believe that we have to avoid including medical assistance in dying in directives that are so coercive, legally speaking. In my opinion, there is no autonomy possible in advance medical directives or advance euthanasia directives. That goes with what I was saying earlier about any document that legally compels the medical team to provide a precise type of care, contrary to the advance medical directives, which prevent the physician or care team from doing things against the person's will. Medical assistance in dying would be included as a mandatory directive to be followed. So the physician is being required to perform an act.

This is the subject I first feel uneasy about. We have to consider that in many cases, people are not give adequate guidance and don't properly understand what medical assistance in dying, advance medical directives or advance euthanasia directives consist of. Experience in the Netherlands also shows that the directives are often not reliable, they don't really align with the context or practice, and people did not always include elements that really made sense for them.

A person may think that because they have expressed their wishes in advance, it will be reliable, coherent and enforceable. However, it does not always express the person's experience well. When the actual situation arises, we find that directives are not always reliable, coherent and enforceable. My unease is due to the fact that we find ourselves dealing with something mandatory and incoherent, that is sometimes neither reliable nor comprehensible.

My unease relates most importantly to ending the days of aged persons suffering from dementia, very vulnerable persons who have not made an informed decision. It may be that the document wasn't reliable and they made a flawed decision. In my opinion, to kill someone, we must be pretty certain that it is what the person wants.

I said I don't practise medical assistance in dying, because a majority—

[Pierre Dalphond]

When you decline to revive someone, you are still allowing them to die.

Isn't that right?

[Dr. Félix Pageau]

That's right. I want to add, however, that death in itself, not providing care, not using heroic measures or providing futile care, doesn't cause me any problems. Passive euthanasia, supporting people in death while respecting their dignity, is not a problem for me.

I find that for autonomous people who are experiencing extreme suffering, medical assistance in dying can be an appropriate treatment or medical act. On the other hand, if the person is in a state of advanced dementia and is no longer autonomous, we are no longer in the same register at all. As I said, there are risks of significant bad practice. In the Netherlands, for example, euthanasia was imposed on a woman who was in a state of happy dementia.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Pageau. I'm sorry to interrupt you.

We will now go to Senator Wallin.

Senator Wallin, you have three minutes.

[Pamela Wallin, Senator, Saskatchewan, CSG]

I'm sorry. I think there was crosstalk there, but if you're asking me to go ahead, I will. Thank you.

Before I ask my questions I'm wondering whether, Mr. Pageau, you would provide any evidence from the Netherlands about cases of people who have been forced against their will to, I think you said, sign documents. People aren't generally asked to sign documents. They actually have the right to choose it or request it. If you have specific examples and it constitutes evidence, I'd like to hear it.

My question is for Dr. Green.

As we heard from our witnesses earlier, of course no one can predict the future, but we do this all the time in health care. We opt to have surgery when we may not know the outcome. We opt for “do not resuscitate” orders in the case of future accidents or conditions that may arise; we don't know what the details are, but we ask for that.

In the case of cognitive decline, we know the outcomes are inevitable. There is a resulting physical decline. We know that's inevitable. What's harder to deal with than this fear of decline is the fear of being denied the right to have any choice or any control over your health outcomes, which we respect in these other cases. Are you concerned that it in fact can hasten the decline of cognitive status and physical status in some cases? Also—and there are cases of this that I'm aware of—some people then choose to end their lives earlier, because they fear the inability to make a choice or to be allowed a choice later on.

[Dr. Stefanie Green]

Thanks for the question.

There are a couple of parts. If I forget some, please remind me.

I do think that we've had precedents. We've had experience in the past five years before the amendments. We saw patients who were nearing the end and were really fearful of losing the capacity to make the choice to go ahead with assisted dying. That was causing tremendous anxiety in patients and their families, to the point that we were able to give that feedback to the government. They heard that story and created the waiver of final consent for very specific populations so that they would take their medications or pain medications at the end of life and they would not withhold that from themselves in fear of losing capacity.

I think there is evidence of patients making premature choices out of fear of what's to come or fear of loss of ability to make those choices or fear of losing control. We've heard lots of talk today about advance directives. I think it has been very well established in medicine for decades now that patients do have the right to give an advance directive for their care in situations that they may not fully understand at the time, such that if they were found to be on life-sustaining medication or were being ventilated, they might choose to have that removed. They could make that choice now, clearly, in a document that we all agree must be respected. I think we have good precedents for advance directives of some sort.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

We'll go to the last senator. Senator Martin, you have three minutes.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

My question is for Dr. Pageau.

I'm that 57-year-old who had a mother with dementia for 12 years. She had palliative care for less than two weeks, so I saw a very.... When I say “positive”, I saw my mother live her life to the fullest to the best of her ability. Had she not done that, I know that out of my fear, if an advance directive or discussion of advance directive and MAID were given to me, I may choose to have such a directive because of this very terrifying experience with my mother.

Would you speak a little bit more about the importance of the timing? When should directives and MAID be discussed? I can see as a 57-year-old what I might have chosen had my experience been different.

[Dr. Félix Pageau]

I don't know whether I should answer the previous question about evidence. In my brief, I cited the study by Ms. de Boer and the Council of Canadian Academies, which reviewed the scientific case literature. It includes the case of the person I spoke about earlier, in the Netherlands. So you could consult my brief.

Regarding dementia, I find it extremely sad that medical assistance in dying is considered to be preferable to the palliative and geriatric care offered in Canada, as was the case for your mother. That is exactly what I want to bring into the debate.

I understand your sadness, because families and the people who care for the aged tell me exactly the same thing as you. Instead of choosing health care, patients prefer to receive medical assistance in dying or active euthanasia, as we practice it here, much more often than assisted suicide. The system is ageist and does not promote the best interests of the patients and greater benevolence toward them. There is still a lot of organizational mistreatment, physical and otherwise, in our health care systems. Medical assistance in dying seems to be a solution. But in my opinion, the solution consists not of eliminating patients, but of caring for them.

[The Joint Chair, Liberal, Marc Garneau]

You have 30 seconds.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

We'll go to the second round for the members.

I'll call on Mr. Cooper once again for three minutes.

[The Joint Chair, Liberal, Marc Garneau]

Co-Chair, we're going to have to proceed to the second panel at this point. We've done our one hour.

[The Joint Chair, Hon. Yonah Martin]

I see. All right....

[The Joint Chair, Liberal, Marc Garneau]

I can wrap it up by saying thank you very much to our witnesses.

Thank you for your input this evening. Thank you for answering our questions.

We are very grateful. What you have to tell us is very important in view of the work we will be doing over the next few weeks.

Thank you for being with us today.

With that, I would like to suspend very briefly as we transition to panel number two.

[The Joint Chair, Liberal, Marc Garneau]

We're now starting panel number two.

Welcome to our two witnesses.

Before speaking, I would ask that people wait until the co-chair recognizes you. All comments should be addressed through joint chairs. When speaking, please speak slowly and clearly to allow for translation.

Interpretation of this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of either “floor”, “English” or “French”. When you are not speaking, please mute your microphone.

With that, I'd like to welcome our witnesses for panel number two. We have Dr. Leonie Herx, chair and associate professor, palliative medicine, Queen's University and chair, Royal College specialty committee in palliative medicine,

We also have with us Dr. Alain Naud, a family and palliative care physician.

Thank you both for joining this group this evening.

I am now going to invite each of you to give a five-minute presentation.

We'll begin with Dr. Herx.

For you introductory remarks, Doctor, you have five minutes.

[Dr. Leonie Herx, Chair and Associate Professor, Palliative Medicine, Queen’s University and Chair, Royal College Specialty Committee in Palliative Medicine, As an Individual]

Good evening. Thank you for the opportunity to speak on palliative care as it relates to the statutory review of Canada's current medical assistance in dying legislation.

I am speaking to you today as a settler on the traditional territories of the Haudenosaunee Confederacy and the Anishinabek Nation. I am grateful to be able to live, learn and play on these lands.

My name is Dr. Leonie Herx. I'm a specialist palliative care physician; head of palliative medicine at Queen's University; medical director of palliative care at Kingston Health Sciences Centre and Providence Care Hospital; the immediate past president of the Canadian Society of Palliative Care Physicians, where I have been a peer-elected member of the board of directors for the past nine years; and the chair of the Royal College specialty committee in palliative medicine.

Palliative care is a holistic approach to care that focuses on enhancing the quality of life for persons living with life-threatening illnesses and their families by means of early identification and impeccable assessment and treatment of symptoms, including physical, psychosocial and spiritual concerns. It supports a person in living well until they die. It is medical assistance in living, or MAIL, if you will. Palliative care does not hasten death and is internationally recognized as a practice that is distinct from MAID philosophically, clinically and legally.

Only about 30% to 50% of Canadians who need it have access to some kind of palliative care of unknown quality, and very few, only about 15%, have access to specialist palliative care to address more complex issues. You are less likely to receive palliative care if you are poor, indigenous, homeless, incarcerated or living in a rural area.

Studies from around the world have shown that early integration of palliative care improves quality of life, reduces anxiety and depression, reduces caregiver distress and may even help people live longer. An integrated palliative approach to care should be provided as part of the management of all serious illness, starting soon after diagnosis. However, due to the ongoing stigmatization and misunderstanding of palliative care as end-of-life care, we are often only involved much later.

When patients' palliative care needs are not met, the ensuing physical, emotional and spiritual suffering can lead them to feeling depressed, hopeless and a burden to others, which are many of the factors driving requests for MAID. Earlier palliative care can alleviate suffering before it becomes irremediable. Failure to do so, as asserted by Dr. Romayne Gallagher and colleagues, should be seen as medical error.

MAID was established for exceptional circumstances, not as a routine procedure for ending life as a solution to suffering that could be addressed through health and social supports that help people live a dignified life. Since Bill C-7, we now see countless cases in the media, and in our own medical practices, of people requesting and receiving MAID due to a lack of basic supports needed for living, including a lack of palliative care, home care and disability care.

Health Canada's annual report on MAID shows that a significant number of people receiving MAID, 15%, had no palliative care at all, or that palliative care came much too late, with 18% receiving it within two weeks of receiving MAID and 19% within four weeks of the request. Another 3% are unknown. At least 35% of those receiving MAID had little to no palliative care. This is consistent with a Canadian study by Munro in 2020, which showed that 40% of patients had no palliative care prior to requesting MAID. This should be seen as a failure of our health care system. With removal of the 10-day waiting period under Bill C-7, these numbers are likely to increase further, because the impetus to call palliative care is not there.

In Carter v. Canada, the Supreme Court of Canada discussed what possible impacts implementing a law for assisted death prior to securing universal access to palliative care might have on the development of a strong palliative care system. With almost six years of lived experience now, we have seen significant deleterious effects of the impact of MAID implementation on palliative care practice, including diminished resources and increasing distress experienced by palliative care clinicians. I will provide some examples.

Some health authorities incorporated MAID into palliative and end-of-life care program roles. This has led to palliative nurses leaving their jobs because they felt unable to provide palliative care. In Ontario, some hospice palliative care nurse practitioners are using their paid full-time palliative care roles to provide MAID.

Palliative care clinicians are having to spend a significant amount of time on administrative issues related to MAID, which takes away from time to provide palliative care.

There is decreased access to specialized palliative care beds when health authorities require hospices and palliative care units to admit patients for the sole purposes of administering MAID.

We see increasing moral distress in palliative care clinicians from forced participation in MAID, due to some health authorities mandating that hospices and palliative care units provide MAID or lose their funding. This is resulting in retention difficulties and early retirements from palliative care, which is accentuating and accelerating the already critical shortage of specialist and generalist palliative care physicians.

We also see patients who are unwilling to access palliative care because they associate it with MAID and are afraid that palliative care will hasten their death or that MAID will be provided without their consent.

Patients are accessing MAID due to a lack of palliative care provision. Patients are requesting MAID because a trusted physician suggested it to them—