Medical Assistance in Dying Committee on May 9th, 2022

[Danielle Chalifoux]

That, in fact, is exactly what the Institut wants to emphasize. If someone wants to put an end to their suffering when they become incapacitated and meets the conditions for receiving medical assistance in dying, the only way to arrange for that is with an advance request. Once the person is incapacitated, it's too late. They can no longer give their consent. It also becomes impossible to obtain a proxy consent.

The vast majority of people do not want to experience such a situation. People have often said that to me that at my lectures, particularly people with cognitive disorders. Such people have often seen members of their family suffer terribly and lose every ounce of their dignity. They don't want to live through it themselves. It's important to be able to make things easier for them in every possible way.

I know that it's a sensitive issue and that it is not necessarily easy, but conditions are often anything but ideal. I believe that it's definitely possible to take appropriate safeguards that could prevent people from suffering intolerably at the end of life, once they have become incapacitated.

[Pamela Wallin]

For anybody who has had any experience with this—a loved one or family member who has gone through this and has suffered through something like dementia or Alzheimer's—it is reasonably foreseeable what the outcome will be. Therefore, it seems we could make that advance request.

[Danielle Chalifoux]

I fully agree with you, Ms. Wallin.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Wallin and Ms. Chalifoux.

Senator Dalphond now has the floor.

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

Thank you, Mr. Chair.

I'd like to thank the witnesses for their insightful testimony.

Ms. Chalifoux, you said that advance requests should not be restricted to cases of neurocognitive disease because that would exclude all other types of medical problems, such as strokes.

For the former, the assumption is that a person received a diagnosis and is still capable of making a decision, but this decision cannot be reviewed afterwards because the person's capacity to give informed consent will have disappeared. For the latter, a person who has had a stroke or who is suffering from another disease may have made a decision 10 years or even 20 years earlier, and it would be possible to develop a mechanism that would review the circumstances every five years, for example.

What you're really suggesting is introducing different regimes depending on the type of advanced directives.

Is that correct?

[Danielle Chalifoux]

Well, the two aspects of the question are not altogether different, because the underlying philosophy for respecting the right to self-determination continues to apply in both. The laws of genetics tell us, for example, that people whose parents have had a stroke also risk having one, and that they are probably worried about it. They say to themselves that they would like to be able to guarantee their right to medical assistance in dying through advanced medical directives.

I believe Mr. Arseneault suggested earlier that there could be an update process to review advance requests every five years, for people to confirm or cancel their decision, if they wish. It's true that this would not exactly be contemporary to the request, if I can use that wording, and it would be up to people to take responsibility for confirming or cancelling their decision. It would amount to a guarantee, or a safeguard, that could facilitate matters.

I'd simply like to mention that in nursing homes and palliative care units I often saw people who had had a stroke and were incapacitated, suffering, and asking to die every day.

I don't see how we could make a distinction between people who have received a diagnosis of a disease about which they can do absolutely nothing, and people who have had a stroke. A stroke happens suddenly, unexpectedly and unforeseeably. These people would be deprived of a right available to others.

[Pierre Dalphond]

I understand that it's a different regime, and that it might require different guarantees and safeguards.

[Danielle Chalifoux]

Yes, precisely.

[Pierre Dalphond]

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Dalphond.

We'll now go to Senator Martin.

Senator Martin, you have three minutes.

[The Joint Chair, Hon. Yonah Martin]

Thank you, and thank you to all the witnesses. My question is for Professor Lemmens.

I think we have the opportunity to learn from the mistakes of other jurisdictions, if there are such lessons to be learned. Based on your experience studying the Benelux countries, are there concerns with respect to abuse or subtle pressure in the context of an advance request? Can you continue from the answers to some of the questions that other members have asked, and what recommendations or what cautions do you have for us?

[Dr. Trudo Lemmens]

Thank you for giving me the opportunity to respond, contrary to what Senator Wallin did. She basically questioned my integrity.

I have studied what's happening in the Netherlands, and the practice they described is actually the reason there are more physicians in the Netherlands who are now opposed to medical assistance in dying for persons with dementia than there were before. Contrary to what Maître Chalifoux says, the Netherlands actually did not have the practice of advance requests for MAID in the first years of its legalization. It took many years to start implementing it, and it has become, and remains, more problematic precisely because of the things I described.

Most physicians are now reluctant because of the uncertainty and what it involves. In other words, my message is that we're sending false hope to people that they will actually easily have an implementation of an advance request, because we do not know how the disease will evolve. Four out of 16 cases that the Council of Canadian Academies expert panel studied—so we're not talking about the broad practice that was implemented—involved patients with questionable capacity who received MAID. In those cases, the review committees, which do much more detailed work than we have currently done in Canada, judged that the due care criteria were not respected, so they had questions about the practice.

I'm simply stating the facts, and I find it problematic that a senator questions my integrity when I studied this honestly and with professionalism, and I have come here as an expert to convey what's happening in the Netherlands and what legal scholars and ethics scholars have again recently discussed. This is the dilemma that we face. We will have to surreptitiously medicate people. We will have to deprive them of their ability to express a current wish in order to facilitate the ending of life.

I'm actually very disturbed that a senator makes it difficult for witnesses to talk and to convey the knowledge that they have about practices in other jurisdictions. I find it very inappropriate. We are here in a parliamentary democracy. You invite experts to come and talk about what they know, and you treat them like this. I think it's inappropriate.

I apologize, Mr. Chair and Madam Chair, for saying this here, but I am very disturbed by this.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much. Unfortunately, this ends our first panel.

All that's left for for me to do, Mr. Chalifoux, Professor Lemmens and Mr. Bernier, is to thank you for having been with us this evening, even though it was on only a week's notice. Thank you very much for your testimony and for having answered our questions on a subject which, as you are well aware, is so serious and has such an important impact on people. Your testimony will be included in our report, to be tabled in the fall.

Thank you once more for having come here today.

With that, I will suspend the meeting temporarily as we prepare for the second panel.

Thank you, everyone.

[The Joint Chair, Liberal, Marc Garneau]

Senator Martin, will you be starting the second panel?

[The Joint Chair, Hon. Yonah Martin]

Yes, I will, Mr. Co-Chair.

For the benefit of our new witnesses, before speaking, please wait until you are recognized by name.

As a reminder, all comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly. An interpretation in this video conference will work like an in-person committee meeting. You have the choice at the bottom of your screen of “floor”, “English” or “French”. When you are not speaking, please keep your microphone on mute.

With that, I'd like to welcome our witnesses for panel two.

We have, as an individual, Jocelyn Downie, university research professor, faculties of law and medicine, Dalhousie University; Dr. Catherine Ferrier, physician, division of geriatric medicine, McGill University Health Centre; and Dr. Susan MacDonald, associate professor of medicine and family medicine, Memorial University of Newfoundland.

Thank you all for joining us this evening.

We'll begin with opening remarks by Ms. Downie, followed by Dr. Ferrier and Dr. MacDonald.

Ms. Downie, you have five minutes. The floor is yours.

[Dr. Jocelyn Downie, University Research Professor, Faculties of Law and Medicine, Dalhousie University, As an Individual]

Thank you and good evening.

Thank you for the invitation to appear before you.

My name, as you've heard, is Jocelyn Downie, and I'm a university research professor in the faculties of law and medicine at Dalhousie University.

I have provided written submissions, including relevant references, to the clerk, and in my five minutes I will introduce some key points for your consideration.

I believe that there are three main questions before you on the issue of advance requests for MAID: one, whether to allow them, and if so, two, when to allow them, and three, how to implement them.

First I'll have a word about terminology: Throughout my remarks, I will use the phrase “advance requests” instead of “advance directives”. This is critical to avoid confusion between the relatively new federal regime for MAID, governed by the Criminal Code, and the already well-established provincial/territorial regimes for other health care.

With that, I'll go on to the questions at hand.

Let's start with whether to allow advance requests for MAID. I encourage you to recommend that Parliament do so, for a host of reasons.

First, all of the many expert committees and panels that have studied the issue and had a mandate to make recommendations have recommended this.

Second, public opinion strongly and consistently supports it.

Third, the courts and provinces and territories have said that individuals should, while capable, be able to make refusals of treatment, refusals that are binding after they lose decision-making capacity. What this means is that I can have an advance directive that says when I reach stage 7 of Alzheimer's or have lost capacity due to Huntington's disease, I refuse all food and liquids. The clinicians must respect my directive, so I will die of dehydration and starvation, or, if you change the law, I could have MAID. To deny MAID is both illogical and cruel.

Fourth, Parliament has already made the decision to allow some advance requests for MAID: “Final consent — waiver” and “Advance consent”, introduced through Bill C-7, are two forms of advance request.

Fifth, some persons with dementia already have access to MAID. They are carefully tracked by a provider closely monitoring their diminishing capacity, state of decline in capability, and suffering. After they have met the eligibility criteria for MAID but before they have lost capacity, they can either access MAID through what is known as the “ten minutes to midnight” protocol or sign a final consent waiver, but they must have a provider willing and able to do this, and they may live for years in fear of not getting the timing quite right and not getting MAID.

Sixth, the concerns that you will hear during your process either aren't conceptually coherent, apply to that which we already allow, and/or can be addressed through procedural safeguards. I cannot, in the time allotted, do justice to the complexities of, for example, personal identity, critical interests, precedent autonomy and the paradox of disability, but I can commend to you the analysis in the 2019 report from the Quebec expert panel on the issue of incapacity and medical assistance in dying.

Finally, there has been enough time to consider this legislative reform, from the provincial/territorial expert advisory group in 2015 to the special joint committee of the House and Senate in 2016 to the 2019 Quebec expert panel and to the 2021 Quebec special commission. This has not been rushed—far from it.

Now, let's turn quickly to “when”.

I encourage you to recommend that advance requests should be permitted after diagnosis with a serious and incurable condition.

Finally, let's turn quickly to “how”.

I encourage you to reflect in your recommendations the philosophical justifications for advance requests for access and for protective measures, the values reflected in our existing laws and the realities of clinical practice.

To that end, I encourage you to recommend that the law first require that a valid advance request document spells out both what the person considers will be intolerable suffering as well as objectively assessable conditions for triggering the advance request.

Second, establish what to do if the now incompetent person appears to have changed their mind or does not appear to be suffering—specifically, follow what the person said should happen if they appear to have changed their mind or do not appear to be suffering—and require, as part of the informed consent process, the disclosure that this may happen.

Third, require that the request be renewed on a regular basis so long as the person remains competent.

With that, my time is up. I thank you for your attention and I welcome your comments and questions on anything that I have said or any other matters of interest to you.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Downie.

Next we'll have Dr. Catherine Ferrier.

[Dr. Catherine Ferrier, Physician, Division of Geriatric Medicine, McGill University Health Centre, As an Individual]

Thank you very much, Madam Chair and Mr. Chair. I'm happy to be here.

I've been a physician in the division of geriatric medicine at the McGill University Health Centre since 1984. My practice is focused on patients with dementia. I'm an expert in decision-making capacity assessment. I see victims of elder abuse. I teach on these topics and testify frequently in court for my patients.

I have cared for and accompanied thousands of people with dementia and their families. My perspective is very different from those who view my patients from an academic or political point of view. I have learned how well people adapt to the changes in their lives wrought by cognitive decline. There are many challenges, not least of which are the ageism, ableism and neglect they face in the health care system.

Despite this, most people do well when measures are put into place to support them and their families. In 38 years, none of my patients or their relatives have ever requested MAID because of a dementia diagnosis.

I've noticed in this debate the assumption that advance written directives are a proven tool that enables autonomy and provides adequate free and informed consent to medical interventions. This is false. For consent to be valid, it must be voluntary. The patient must have the capacity to consent and must be informed. Consent is informed when the patient has received and understands the detailed information in the diagnosis, including any uncertainty, the proposed investigations or treatments, their chances of success, available alternatives and their risks, and the potential consequences of leaving the condition untreated.

Advance consent can never be fully informed.

The 2018 CCA expert panel on MAID by advance requests cited knowledge gaps and a lack of evidence regarding its safety. They reviewed the literature on advance care planning, or ACP, a field that was developed to improve medical decision-making towards the end of life. ACP is not limited to advance directives. In fact, its scope is becoming broader over time, as the limitations of such directives, also called living wills, become evident. Articles published by experts include “Why I don't have a living will”, in 1991; and “Enough: The Failure of the Living Will”, in 2004.

Definitions of ACP refer to a reflection and communication process to ensure goal-concordant care near the end of life for people lacking decisional capacity. Components include discussion of broad life and health care goals and naming a substitute decision-maker.

Of the research reviewed by the CCA panel, very little studied written directives alone. The report mentions no evidence that written directives effected any meaningful outcomes. In one Canadian study, the documented preferences did not match the expressed wishes of the patient 70% of the time.

A 2020 review of 69 studies found no effect of advance care planning on goal-concordant care or quality of life. These results make sense, given the evidence that people predict poorly their quality of life in hypothetical situations. This has been attributed to known cognitive biases, such as projection bias, projection of current preferences onto future situations; focalism, focusing on what gets worse, not what remains positive; and immune neglect, underestimating one's adaptive capacity.

We often see a change in preferences for care as a person adapts to advancing illness. This is true even in dementia, and it is is why we respect the current wishes of incapable patients as long as they are not harmful to the patient.

More and more end-of-life experts express serious doubts about the utility of written advance directives. Recent articles include “Advance Directive/Care Planning: Clear, Simple, and Wrong”, in 2020; “What's Wrong with Advance Care Planning?”, in 2021; and “Should we still believe in advance care planning?”, in 2022.

Morrison et al, the authors of one of those articles, state:

Treatment choices near the end of life are not simple, consistent, logical, linear or predictable but are complex, uncertain, emotionally laden, and fluid. Patients' preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden.”

For these reasons, there's been a shift in practice from promoting written documents to a dynamic process of dialogue. This is the standard of care for end-of-life decision-making.

It is absurd and alarming that written directives, having failed for ordinary treatment decisions, are now being contemplated for MAID.

To cause the death of a person with dementia who is not asking for it on the basis of advance consent that is necessarily uninformed is contrary to autonomy and beneficence and has nothing in common with treatment withdrawal decisions. There is a broad consensus in ethics and medicine that to directly cause death is distinct from allowing death to occur through the natural progression of an illness.

Advance directives for MAID would lead to elder abuse through manipulation and forgery of directives. I've seen it with powers of attorney, where the consequences are not nearly as grave.

If MAID by advance request became legal and binding, Canada would be the only place in the world where a state agency is obliged by law to kill an innocent and defenceless person.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Ferrier.

Our final panellist is Dr. Susan MacDonald.

You have five minutes.

[Dr. Susan MacDonald, Associate Professor of Medicine and Family Medicine, Memorial University, As an Individual]

Good evening. Greetings from Newfoundland and Labrador.

I have practised palliative care for 30 years and have had the privilege of caring for thousands of patients and families. I provide secondary assessments for MAID and have had a close relative utilize MAID. My words today will reflect my personal thoughts on the subject rather than support any organization.

I feel that MAID is an end-of-life option that can be part of palliative care but is not exclusive to it. Many of us who practise palliative care are involved, to some degree, in the provision of MAID, whether it is to fully inform our patients of all their options, including MAID, to discuss this option in depth with our patients, to be the second assessor, or to be the primary provider. There will always be a divide among clinicians on this subject, but, regardless of a clinician's personal feelings, the patient has a right to know about this procedure, what the criteria are and how to obtain it.

From a practical point of view, here are my thoughts about MAID and advance directives.

My first concern is about palliative care. Not everyone has access to palliative care. Provincial and local issues dictate whether anyone with skills in this field of medicine is available. Virtual care has limitations and cannot fully compensate for this lack. Some patients could benefit from our services but are limited in access because their physician refuses to refer, because their local program has limitations regarding who can have services and for how long, or because there may not be anyone available to provide in-home care. There may be no paramedics trained to provide palliative care at home. In my jurisdiction, having this service very significantly reduces the number of admissions to institutions. Good symptom management and support at end of life, whether it be in the last years, months, days or hours, is a human right. We're failing the Canadian people when postal codes determine access.

My other concern is that MAID is not routinely offered as an option. Ideally, all choices for patients should be outlined early in order to give patients ample time to consider which options work for them and which do not. Not informing a patient that MAID is an option is unfair to the patient and doesn't follow the guidelines for informed consent. For example, would we consider that a patient newly diagnosed with cancer be offered surgery, radiation and symptom management only, if chemotherapy were also possible? Would we say to ourselves, “We don’t offer chemotherapy unless the patient specifically asks about it”? Of course not, yet this happens over and over with MAID, because there is a perspective among some clinicians that they cannot raise the topic and that to mention it encourages or solicits a patient. Patients require time to consider their options: “What's in keeping with my personal philosophy? What can I afford? What can I obtain? What do my culture, religion and personal values tell me is right?”

We know that some populations in this country have less access to MAID than others. We must continue to be mindful about this and work hard to ensure that all Canadians have the opportunity to avail themselves of all of the end-of-life choices that suit them. Patients should be able to obtain MAID wherever they live.

However, there are still institutions and organizations that deny MAID on their premises. My own relative couldn't go to her local hospice, because she wasn't allowed to have MAID there.

MAID providers should have adequate training and support. This should be standardized across the country. Many providers find they need adequate breaks or supports when involved in this type of care. We need to ensure there are enough clinicians who thoroughly understand what they're doing and how to do it. There has to continue to be clear oversight, data collection and frequent evaluation.

People should be able to determine whether they want MAID at a future date, should they become incapacitated. Many of my patients have told me over the years that the one thing they fear the most, beyond pain, shortness of breath or anything else, is the loss of the ability to make their own decisions. This creates tremendous human suffering.

MAID has been a positive addition to the list of possible ways for me to care for my patients. It's a gift to those who want the option of control: There's always an escape route if things get too bad. Sadly, many patients are very unaware that this option exists. They can't create a tool to ensure they get MAID when they want it.

The MAID deaths I’ve witnessed have been the easiest and most peaceful of my career. While most of my patients do not end up utilizing this option, more increasingly do.

[The Joint Chair, Hon. Yonah Martin]

You have 30 seconds.

[Dr. Susan MacDonald]

As a palliative care physician, it is my privilege to help all my patients get the death they want.

Thank you very much.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. MacDonald.

Now we'll go into questions from our members.

The first questioner, for five minutes, will be Mr. Cooper.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

I believe it's Mr. Barrett.

[The Joint Chair, Hon. Yonah Martin]

I'm sorry; it's Mr. Barrett.