Medical Assistance in Dying Committee on April 25th, 2022

[The Joint Chair, Liberal, Marc Garneau]

Dr. Herx, you'll have to wrap up very quickly.

[Dr. Leonie Herx]

Sure. I have 10 seconds.

Currently, Canadians have a right to medical assistance in dying but not to medical assistance in living. Having accessible, high-quality palliative care needs to be a universal right in Canada.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

Dr. Naud, you have the floor for five minutes.

[Dr. Alain Naud, Family and Palliative Care Physician, As an Individual]

Thank you very much, Mr. Chair.

I would first like to thank the committee members for offering me the opportunity to tell them about my experience and my observations concerning medical assistance in dying.

I have been a family and palliative care physician for 37 years. I was an expert witness on medical assistance in dying and palliative care at the trial of Ms. Gladu and Mr. Truchon in 2019. The other details about myself are in the 18-page brief I filed with the committee earlier. The brief contains a number of references to various documents and reports that I invite you to consult. In it, I refer to the current situation and address the issue of expanding access to mental health for minors and, more specifically, of advance requests after a diagnosis of Alzheimer disease or other major neurocognitive disorders.

After more than six years' experience with medical assistance in dying in Quebec and nearly as long in Canada, there is a clear finding that the famous slippery slope promised by opponents has never happened and that medical assistance in dying is administered stringently and in complete compliance with the law.

Medical assistance in dying is a form of medical, moral, ethical, legitimate and perfectly legal care. There is no conflict between medical assistance in dying and palliative care; quite the contrary. With palliative sedation and refusal of treatment, these are interrelated and complementary end of life options, the choice of which belongs exclusively to a patient who is competent and well informed. In Quebec, approximately 80 per cent of patients who died after receiving medical assistance in dying were already receiving palliative care. The remaining 20 per cent refused palliative care, and were perfectly entitled to do so.

I am now going to talk about Alzheimer disease and advance requests. This is the first expansion of access that has long been awaited by an undeniable majority of the public and on which there is a broad consensus. Two Canada-wide surveys conducted in 2019 and 2021, respectively, that are referred to in my brief, showed that 85 per cent of Quebeckers and 80 per cent of Canadians wanted directives of this kind.

In Quebec, a group of independent experts retained by the government to study the issue from ethical, clinical and legal perspectives worked for two years, from 2017 to 2019, and submitted a report that recommended, at the end of a remarkable exercise in consideration and documentation, that advance requests be made available. The reference to their exhaustive report, in French and English, is available in my brief. On that subject, my brief also gives references to the Quebec forum that was held in January 2020 and to the report of the special committee of the Quebec government that was submitted in December 2021 and also recommended instituting advance requests.

I refer to a survey of physicians and the public done by the Collège des médecins du Québec, and most importantly to the position of the Collège, approved by its board of directors in December 2021, regarding advance requests, mental health and minors.

I comment at length on happy dementia, which is sometimes cited by certain people to oppose advance directives, and in my brief I propose a mechanism and safeguarding measures to put in place that are based on the choice, by the person themself, of observable and objective signs of the seriousness of the illness when the person reaches the stage of incapacity, and not on a clinical stage. These directives must absolutely be mandatory and not subject to veto by family, as is already the case for mandates in the event of incapacity, wills, and, in Quebec, the Registre des directives médicales anticipées.

Advance requests have to be made accessible to avoid some patients with Alzheimer disease committing suicide. That is a little known fact, but it happens. I am thinking of the stories of three public personalities.

On the question of vulnerability, I refer to the judgment of the Superior Court of Quebec in the Gladu and Truchon case. The Court heard numerous experts over two months, analyzed voluminous evidence, and concluded as follows:

1. Medical assistance in dying as practised in Canada is a strict and rigorous process that, in itself, displays no obvious weakness 2. The physicians involved are able to assess the patients’ capacity to consent and identify signs of ambivalence, mental disorders affecting or likely to affect the decision-making process, or cases of coercion or abuse; 3. The vulnerability of a person requesting medical assistance in dying must be assessed exclusively on a case-by-case basis, according to the characteristics of the person and not based on a reference group of so-called “vulnerable persons”. Beyond the various factors of vulnerability that physicians are able to objectify or identify, the patient’s ability to understand and to consent is ultimately the decisive factor, in addition to the other legal criteria;

I invite you to read that remarkable judgment, which is available in English.

On the subject of mental health, I address the reasons, based on experts' reports, why mental health cannot be excluded from eligibility. It is important now that we consider the guidelines to be put in place, before the expiry of the deadline for Bill C‑7.

To conclude, on the question of minors, I again rely in my brief on the position of the Collège des médecins du Québec, which I endorse in its entirety, on experience since 2002 in Belgium and the Netherlands, in particular with its Groningen Protocol, and on the 2018 document of the Canadian Pediatric Society. That society conducted a survey of Canadian pediatricians that clearly shows that pediatricians here receive requests for medical assistance in dying and discuss this subject with young people and their parents.

I illustrate this with a situation that occurred in Quebec. Last year, a young man died at the age of 17 years and nine months of a very aggressive cancer and he would have liked to receive medical assistance in dying. He was unable to get access to that because he was three months short of being entitled to it.

Thank you again for inviting me to appear before the committee.

I am available to answer your questions or any questions you might have after reading my brief.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Naud.

We'll now proceed with the first round of questions. I'll transfer back to my co-chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Monsieur Garneau.

We'll begin with questions by Michael Barrett for five minutes, please.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Thank you, Co-Chair, and thanks to the witnesses for appearing here today.

My first question is for Dr. Herx. I was interested to hear you reference the number 35% as those who accessed MAID but didn't have access to palliative care. We recently heard testimony, Doctor, from a witness who was here as an executive adviser on behalf of Health Canada, Ms. Abby Hoffman. Her position on behalf of Health Canada was that most people who have had MAID had palliative care. What's your response to that, Madam?

[Dr. Leonie Herx]

Thank you for the question, Madam Chair.

There's a really significant problem with the data that's being collected by Health Canada, which was reported by Ms. Hoffman. I did listen to her testimony and I'm very aware of the Health Canada reports. Those rely completely on self-reporting by MAID providers, and there is no ability right now in Canada to measure the quality or quantity of palliative care that is being provided or to know who is providing it. We do not have any standards or ability to collect data nationally, as we can for MAID statistics. Unfortunately there is no ability to make those conclusions.

We know that clinicians have a large misunderstanding about palliative care and don't understand how it can make such a difference in someone's life early on to prevent getting to the point of irremediable suffering. How palliative care is explained to patients when they request MAID is only as good as the person who is giving the explanation. We know that patients often get wrong information and have a very limited understanding.

I think one of the biggest problems is that if you're only hearing about palliative care when you get to the point where you're asking for death, then we have a big problem, because we failed upstream to treat the problem in the first place. That's the part that we need to focus on.

There is so much suffering that's not being alleviated because palliative care is not readily available to patients when they need it, when they start having symptoms and suffering because of serious illness. It needs to be integrated early into chronic illness, and right now, in our very best data, which is subjective reporting by MAID providers who may not understand what's involved in palliative care, we're seeing 35% of people have palliative care maybe within two weeks of their request, which is probably much too late, or maybe receiving none at all. Even four weeks prior to the request, I would say, is inadequate to prevent irremediable suffering.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

I don't want to infer something that you weren't intending with your remarks. Could you just clarify very quickly, if you wouldn't mind, what you think about the claim from that same witness or that same testimony that there are very few cases of non-compliance per year?

[Dr. Leonie Herx]

We cannot draw the conclusions. We do not have the data to draw those conclusions.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Okay.

I believe that you said—and pardon me for paraphrasing—that palliative care does not hasten death and is internationally recognized as a practice distinct from MAID. Can you comment on the specific statement by Health Canada in that same testimony in our last meeting that MAID and palliative care are not separate?

[Dr. Leonie Herx]

Yes, absolutely.

The national palliative care organizations, including the colleges that are responsible for setting the competencies for the certified training programs, including a two-year Royal College program in palliative medicine and a one-year College of Family Physicians program, are much different from the continuing medical education modules we're talking about for MAID. Those certification programs and the national bodies for palliative care and the international organizations recognize that palliative care does not hasten death at all. It accompanies people through suffering and helps them live well until they die.

The difficulty we are experiencing in palliative care is that MAID has been forced into that care by health authorities and non-palliative experts who've said that you have to provide it in your hospices and your palliative care units, and that is forcing us to be involved. That's also a bit of a misrepresentation, I think, that Health Canada reported. They're not completely separate because they've been forced to go together by external authorities who are not experts in palliative care.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Right. I think I have 30 seconds left, Dr. Herx. Thank you for your responses.

Do you have any thoughts on the regional variation of MAID rates, with a very high number—the highest in the world—coming from Victoria, B.C., and does this cause you concern?

[Dr. Leonie Herx]

It's very alarming. I think that if there is an area where any medical procedure is being done at much higher rates than anywhere else in a country or in a program, it should be put under significant scrutiny and reviewed to find out what is happening there that's so awry with the rest of the country. I would hope that an assessment of the situation on Vancouver Island is going to be happening.

[Michael Barrett, Conservative, Leeds—Grenville—Thousand Islands and Rideau Lakes, ON]

Yes. Thanks very much, Dr. Herx.

Thank you, Madam Co-Chair.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

The next person will be Dr. Fry, for five minutes.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you very much. I want to thank everyone for coming today and giving us their time on a very complex issue.

I'm a family physician, or I used to be family physician, for very many years, and I find that what I'm hearing today is people suggesting that it is one thing or the other, that you either seek MAID or you seek palliative care, and I don't think that's true.

I really do, in terms of my own experience with patients, feel that palliative care has a place. A lot of people wish for palliative care, and then after that, they may get to a point where they decide that whatever is going on with their lives is unbearable and that they want to access MAID.

You have questioned Ms. Hoffman's and Health Canada's report that 82.8% of people who accessed MAID had palliative care given to them. I think the "either/or” concerns me a little bit, the idea that there is one silver bullet that if accessed by everyone would enable them to get better.

I think Dr. Naud said it extremely well. I almost got up and applauded when he said that assessing or giving a patient MAID or palliative care, or whatever else you may do to give them support, is about the patient. It's not about whether the physician believes that their decision is the most important decision for the patient; it's about knowing and assessing your patient and knowing when your patient has come to the point where they can trust you to tell you, “You know what? This has been working well. I am feeling very good about myself, but I really don't want to do it any more. I've just had it, with my years, etc.” I think it's really important for us to start talking about the things that happen if a patient who is in palliative care says, “I would like to have access to MAID.” What is it that you would say to that patient, Dr. Herx?

I know that Dr. Naud talks about the patient and the patient's limits, the patient's tolerance. It is, at the end of the day, about the patient. I think the issue of advance directives is something I'd like to get into, but I don't think I'm going to have time.

How do you make a decision in the best interest of your patient, Dr. Naud, when your patient is going through the end of life, when they're going through pain and so on? How do you make those decisions on an individual case-by-case basis?

[The Joint Chair, Hon. Yonah Martin]

First we'll go to Dr. Herx, followed by Dr. Naud.

[Hedy Fry, Liberal, Vancouver Centre, BC]

No, I would prefer that Dr. Naud answer the question.

[Dr. Alain Naud]

Thank you very much for the question, which is indeed important.

Opponents of medical assistance in dying have long tried to portray medical assistance in dying and palliative care as mutually exclusive. That is the tactic that says you are with someone or against them. In fact, they are not in conflict. As I said, they are complementary and interrelated forms of care.

In Quebec, when the Act respecting end of life care was enacted and medical assistance in dying began to be offered, all public health institutions in Quebec had an obligation to offer this end of life care to all Quebeckers and to make it available.

The idea is not to impose medical assistance in dying, but to make it available. The only exception was for hospices, which are autonomous institutions managed by their own boards of administration. Originally, in December 2015, all these institutions had said they would never offer medical assistance in dying, because it was contrary to palliative care.

Determining for a patient what is the best way to die, for them, smacks of a medical paternalism that has no place in 2022. As caregivers, as physicians, our role is to inform the patient of the options available to them, make sure they clearly understand, and respect their choice, regardless of our own choice, our own values and our own convictions.

In end of life situations, there aren't 50 options, there are four: palliative care, medical assistance in dying, palliative sedation, and refusing or stopping treatment.

I'll come back to the 34 hospices—there are now many more than that in Quebec—that refused to offer medical assistance in dying. Today, more than half of them also offer medical assistance in dying in the care they provide.

We are focused on what the public requests and the interests of patients. One fact has always been true: among the patients who entered hospices, many requested medical assistance in dying along the way, because they could not suffer any longer. All that they could be offered was to put them to sleep until they died. That is not what people wanted.

[The Joint Chair, Hon. Yonah Martin]

There are actually less than 10 seconds.

[Hedy Fry, Liberal, Vancouver Centre, BC]

My goodness, I just wanted to ask Dr. Herx something. She is making a point that there must be more palliative care available to people.

I do agree with Dr. Naud, because I think it is paternalistic to tell a patient at the end of the time when that patient makes a decision what is best for the patient or not.

[The Joint Chair, Hon. Yonah Martin]

Okay, thank you, Dr. Fry.

Next we'll have Mr. Thériault for five minutes.

[Luc Thériault, Bloc, Montcalm, QC]

Thank you, Madam Chair.

Dr. Naud, you are entirely right to talk about experience in Quebec, which has included in a continuum of care the possibility that a request for medical assistance in dying will emerge along the way, rather than treating it as conflicting with other care.

Dr. Herx said that we had to take a holistic approach, and I absolutely agree. However, how would palliative care, this comprehensive support in dying, suddenly create a feeling of failure if one fine day, because the dying person has received good palliative care, they are completely calm and say they are ready to let go? It might also be a success for palliative care, to allow for genuine support in dying, might it not?

[Dr. Alain Naud]

You are entirely correct. We must certainly not see it as a failure, but as an element in a continuum of care, quite simply.

Again, medical assistance in dying is a legitimate and legal type of care; it is not a shameful type of care. I have been involved in palliative care for 37 years and in medical assistance in dying since the beginning, and I have never promoted medical assistance in dying. In my opinion, that care is no more or less honourable than palliative care, sedation or refusing treatment. What is important is to offer the patient the options that are available, explain them clearly, and make sure the patient is making the decision based on their own values, beliefs and convictions.

In the field of palliative care, some of the opponents of medical assistance in dying oppose it based on religions conviction, which is often carefully concealed, and some out of ideological conviction. We could so a whole psychoanalytic examination of this. We know how important palliative care is and how significant a role it has played in the last 30 years. It was essential to be able to offer it to all Quebeckers. So I think that some physicians see medical assistance in dying as an admission of failure. They may unconsciously feel that they have failed when they find themselves in a situation where they have promised to support a patient until their death and they have to tell the patient that they can no longer support them at their end of life because the patient has made a choice they oppose.

Personally, as a palliative care physician, when I get a request from a patient who tells me that the oncologist says there is nothing left to be done, I tell them that there is everything left to be done, that we will do it together and I will hold their hand to the end, regardless of what end of life choice they make. I tell them I will be with them and I will respect their choice.