Medical Assistance in Dying Committee on Oct. 21st, 2022

[The Joint Chair, Liberal, Marc Garneau]

Good morning, everyone.

Today is the 21st meeting of the Special Joint Committee on Medical Assistance in Dying.

I would like to begin by welcoming members of the committee, witnesses, as well as those watching this meeting on the web.

My name is Marc Garneau and I am the Joint Chair of this committee representing the House of Commons, together with the Honourable Yonah Martin, the Joint Chair representing the Senate.

Today, we are continuing our examination of the statutory review of the 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're recognized by name by a joint chair. As a reminder, all comments should be addressed through the joint chairs.

When speaking, please speak slowly and clearly. Interpretation in this video conference will work like in an in-person committee meeting. You have the choice at the bottom of your screen of floor, English or French.

With that, I'd like to welcome our witnesses for panel one, who are here to discuss the state of palliative care in Canada. As individuals, we have Julie Campbell, a nurse practitioner joining us by video conference, and Dr. Nathalie Zan, whom we hope will be on very soon. We also have, from the Christian Legal Fellowship, Derek Ross, executive director.

Thank you all for joining us this morning. We will begin with opening remarks by Ms. Campbell, followed by Mr. Ross and Dr. Zan. Hopefully Dr. Zan will have joined us by then.

Ms. Campbell, you will have five minutes to speak. The floor is yours. Please go ahead.

[Julie Campbell, Nurse Practitioner, As an Individual]

I want to thank you for the opportunity to speak with you today.

I'm here as an independent nurse practitioner and MAID provider, and I speak with the experience of supporting access throughout Ontario.

I want to start by sharing my appreciation for your support of the CAMAP national MAID curriculum project. I also acknowledge the good work done to establish the waiver of final consent to allow patients to fully optimize their pain and symptom management without fear that a loss of capacity would limit their choices. This work can continue by establishing advance directives specifically to address patients with conditions that by their nature will progress to impair capacity.

In previous testimony, you've heard references to the mounting research on the importance of identifying patients early for palliative care. I echo those comments and fully support education to integrate a palliative approach to care in all care settings.

Practitioners involved with MAID share concerns about late referrals. Of the 3,228 patients I was involved with who expressed an interest in MAID, only slightly more than half decided that MAID was the right choice for them. Many others did not proceed but had a choice. I believe that information can be a step toward reducing fear and uncertainty. Information doesn't promote MAID. It encourages progressive discussions with care providers and loved ones and encourages informed, thoughtful patient choice.

I echo the previous testimony on the high percentage of patients receiving MAID who also receive palliative care and the suggestion that we should continue to aim higher. This isn't just measured in percentages, but also in the level of interdisciplinary supports available and the reduction of barriers. Measurement of the quality and access of palliative care should be done within palliative care. Patients who choose MAID are only a small group, so it is important not to miss the experience of others.

MAID is not a failure of care. It is a choice about how one dies. I would add that the patients most likely to receive palliative care are those diagnosed with malignancies. We need greater identification of patients with serious life-limiting chronic conditions and even more focus on our frail elderly or patients with dementia who are least likely to be identified and to receive palliative care supports.

I'd like to complete my statement today with some suggestions for improving palliative care and MAID in Canada.

We need to leverage the successes demonstrated from interdisciplinary patient-centred teams of professionals and focus on those least likely to be identified for palliative supports. Federal statistics identify that the percentage increase in MAID provisions outpaces the increase in number of providers and, in particular, the number of providers with the experience to take on the increasing complexity of this work. This data does not acknowledge the health human resources needed to provide education and assessment for those who do not proceed with MAID.

Patients seeking MAID also need integrated teams. Some provinces offer some of this integration, but others significantly less. MAID has been described as a procedure. I think that's an oversimplification of the relationships fostered and the thoughtful, careful assessments that give us such insights into patients and suffering through their eyes.

As we increase the complexity of patients who may be eligible, we need to access expertise in a variety of conditions, including services with significant waiting lists, like specialty pain and psychiatric supports. We need coordination and administrative supports; mental health, social work, nursing and social supports; and an ability for clinicians to travel and optimize virtual care to promote equity. An additional advantage of building these teams would be to provide remuneration for nurse practitioners, who remain without the independent funding support provided to physician colleagues. They play an important role in ensuring access.

We need to remove organizational barriers to integrated care that force transfers of patients in their moments of greatest vulnerability. We also need targeted federal health care transfer payments to bridge the gap between federal legislation and provincial implementation. We must ensure that integrated, interdisciplinary MAID access isn't just legal, but an available choice.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Campbell.

We'll now go to Mr. Ross.

Mr. Ross, you have five minutes.

[Derek Ross, Executive Director, Christian Legal Fellowship]

Thank you, Mr. Chair.

Good morning, and thank you to the committee for this opportunity. My name is Derek Ross. I'm the executive director and general counsel for Christian Legal Fellowship. We are a national organization of lawyers and an NGO that has special consultative status with the United Nations. CLF also intervened at all levels of court in the Carter case.

I think it's important to look at that decision in our deliberations and discussions today. The Carter case, as you know, called for the legalization of MAID, but only for competent adults who are irremediably suffering, fully informed, non-ambivalent, clearly consenting and free from coercion or duress, and only in the context of a carefully designed system imposing stringent limits that are scrupulously monitored and enforced.

It's important to review our compliance with that criteria and how we can ensure the conditions necessary for a patient's choices to truly be, in the words of Carter, “non-ambivalent”, “voluntary” and “fully informed”. One such condition is that a patient should have meaningful access to quality services that can alleviate their suffering, such as palliative care. If a person wants to live but is accepting death because they lack basic supports, then they haven't made a free choice at all.

The Criminal Code requires that all patients be “informed of the means that are available to relieve their suffering” before MAID. However, palliative care and/or disability supports were not accessible in hundreds of cases of MAID thus far, according to Health Canada. Even where they were accessible, their adequacy and quality were unclear from those reports. A number of other concerns have emerged, which are set out in our brief and which have been echoed by United Nations human rights experts. Canadians must know that these concerns are being investigated and addressed. It is not enough to simply report on safeguards; the government must, in the words of Carter, “scrupulously” enforce them.

Provision of MAID in circumstances where reasonable supports are lacking may also raise charter concerns. As we explain in our brief, if the government were to offer death as the only accessible option for patients while failing to deliver health care in a reasonable manner, it could be interfering with the right to life and security of the person, protected by section 7 of the charter.

Previous witnesses have raised concerns about inadequate resources and funding for palliative care and a lack of public awareness about what it offers. It is crucial to address these concerns, especially, we would add, in the pediatric context. The CCA expert working group observed that “little is known about how mature minors make meaning of end of life care”. We need to know more about how specialized pediatric palliative care can be prioritized to better support youth.

Neither Carter nor Truchon required MAID for minors. They certainly did not require involuntary euthanasia for infants, no matter how severe their disability nor how short their predicted lifespan. We would urge this committee to reject any proposal in that regard, such as what was proposed before this committee. It would eliminate the requirement of consent, which infants cannot provide, and would infringe the charter's protection of the right to life and the right to equal protection of the law without discrimination based on disability. This is not to deny that Canadians of all ages who are suffering deserve better solutions. They do. It is because they do that we must prioritize palliative care.

We would recommend that all patients not just be informed but be offered consultations with professionals who provide care to relieve their suffering, including palliative care. Those are patients in track two and track one. We would also endorse the observation that the Standing Senate Committee on Legal and Constitutional Affairs made last year: “The Government of Canada should create an oversight body or mechanism to ensure compliance with MAiD regulations and to oversee that appropriate accountability and medical care have been provided to all patients”.

I look forward to your questions. Thank you again for the opportunity to present today.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Mr. Ross.

Before I turn it over to my co-chair, I just want to confirm that Dr. Zan has not yet joined us.

I'll now turn it over to my co-chair, Senator Martin.

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

Thank you very much.

Thank you to our witnesses this morning. Your testimony will be very valuable for the study we are doing at this time.

We will begin with questions from members of Parliament.

Mr. Cooper, you have five minutes.

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

Thank you, Madam Chair.

I will direct my questions to Mr. Ross.

Can you speak to the legal distinction between palliative care and MAID? We hear about the continuum of end-of-life care involving both palliative care and MAID. Can you clarify the legal distinctions?

[Derek Ross]

To address that, I would direct the committee to legal principles in a couple of areas of our case law and legislation, starting with Carter. In the trial decision in Carter, the trial judge defined palliative care and assisted dying separately.

The court defined palliative care as treatments aimed at alleviating suffering. It aims to neither hasten nor postpone death but affirms life and regards dying as a normal process. That was at paragraph 41 of that decision. Assisted dying, on the other hand, involves the intentional termination of the life of a person at their request.

Those practices were recognized as distinct in Carter. Palliative care exists to improve the quality of life throughout life and throughout the natural dying process. MAID involves an intentional act to terminate the life of a patient at their request. In fact, in Carter, the trial court, after reviewing the evidence, observed that adequate palliative care can reduce requests for euthanasia or lead to their retraction.

That also led to another—

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

That dovetails into my next question. Can you speak to what the courts have said about palliative care as a safeguard in the context of MAID?

[Derek Ross]

Yes. That was also discussed in Carter. One of the aspects is ensuring that a patient who receives MAID or at least seeks MAID has the benefit of informed consent and has information about all available options. In Carter, the trial judge said that the range of treatment options described would have to encompass all reasonable palliative care interventions in order for that informed consent standard to be met.

The trial judge in that case required that the plaintiff be referred to a physician with palliative care expertise for a palliative care consultation before proceeding with MAID. That was something that the trial judge wanted the treating physician to certify.

That's also reflected in the preamble to the Framework on Palliative Care in Canada Act, which states:

a request for physician-assisted death cannot be truly voluntary if the option of proper palliative care is not available to alleviate a person’s suffering

That refers to the final report of the external panel on options for a legislative response to Carter. Certainly the case law suggests and, in fact, affirms that information and access to palliative care are important for there to be informed consent for patients seeking MAID.

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

Thank you for that.

You spoke about the Carter decision at some length. We hear a lot about autonomy, and the court certainly recognized individual autonomy in making a choice with respect to MAID. However, the court also talked about balancing that against the real risks involving vulnerable Canadians.

Can you elaborate on what the court said in that regard?

[Derek Ross]

I think it's important to remember how the court in Carter framed the issue. The court said that MAID would be an exception, a stringently limited exception, that would be “scrupulously monitored”, and the stringent limits would be scrupulously enforced precisely because there are inherent risks in any regime that permits assisted death. That's not—

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Mr. Ross.

Next we'll have five minutes for questions from Monsieur Arseneault.

[René Arseneault, Liberal, Madawaska—Restigouche, NB]

Ms. Fry will be speaking now, Madam Chair.

[The Joint Chair, Hon. Yonah Martin]

I'm sorry; you're right.

Dr. Fry, I reversed the order by mistake. You have the floor for five minutes.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you very much, Chair.

I want to thank the witnesses for coming once again and exploring with us some of the questions we need to ask about this very important topic.

I think what I heard from Mr. Ross is that palliative care is an actual continuum or spectrum of care as a person seeks MAID, and palliative care is an integral and important part of that. What I'd like to find out is this. As you well know, inherent in the Carter decision is the idea that this is about the patient's fully informed choice, as you mentioned. However, it is a normal part of practising medicine that you must fully inform your patients of all their options in treatment and care before they start making choices.

As Carter said, if this is about the patient's decision eventually, for whatever reasons, once they're fully informed, what do you think would happen if the patient decided that given all that information, they did not want to go into palliative care? That's the first question I want to ask you.

The second question I want to ask is about whether or not palliative care, which is in provincial jurisdiction, is readily available for a particular patient. We've heard the stories that sometimes they're not ready or they're not available, or the patient doesn't have an ability to live life because they don't have support systems. If all that is there and is available to them, do you believe they must have palliative care, or do you believe there is still an option based on informed consent?

[Derek Ross]

Thank you so much for those thoughtful questions. I'll do my best to address them. They are very important.

At the outset, though, you indicated that you thought you heard me say that palliative care and MAID are part of a continuum. That is not what I am suggesting. In fact, I think it's important to recognize that these are distinct practices. These are distinct fields that were recognized by the framework on palliative care in Canada.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Yes, I understand that, and I'm sorry if I.... What I'm saying is there is a continuum of care in any care. It's the whole bandwidth of care that's available to a patient. Palliative care is part of that; MAID is another part of that. I'm not suggesting that the two are conflated.

What I'm asking is that given fully informed consent, do you think the patient, under Carter, has the right to refuse palliative care? Do you believe, in fact, if palliative care and everything is available, that the patient eventually is the one who will make that decision?

[Derek Ross]

Yes, I think Carter is clear that a patient cannot be forced to undergo treatment that is unacceptable to them, so that is certainly part of the consideration.

As you said, the emphasis here is on a patient's choice. What we're trying to emphasize today is the choice for patients who are seeking palliative care, or at least who want to explore it but currently don't have the ability to do so because of a lack of access or information. That is so important for us to be emphasizing in this question around choice.

[Hedy Fry, Liberal, Vancouver Centre, BC]

I'm sorry, Mr. Ross, but I don't have a lot of time and I want to ask you one more question.

Given that there is a spottiness in the provincial jurisdictions and in availability in different provinces, what do you think the federal government should do to ensure that patients have their full choice?

[Derek Ross]

That is such an important question.

I think first and foremost there needs to be a prioritization of this issue at the federal government level. They've done some great work with the framework, but that needs to be implemented. That requires very close and concerted coordination and implementation with the provinces.

One thing I think the federal government can do is prioritize the re-establishment of the office of palliative care, which would be an office in the federal government to help coordinate these efforts and ensure that this is a policy priority being advanced and worked on in conjunction with the provinces. The federal government can also earmark funding for palliative care projects, supporting organizations that work in this area that try to provide logistical support to patients and families who are seeking access to palliative care.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Chair, do I have any more time? How am I doing here?

[The Joint Chair, Hon. Yonah Martin]

No. We're at five minutes now. Thank you, Dr. Fry.

[Hedy Fry, Liberal, Vancouver Centre, BC]

Thank you very much.

[The Joint Chair, Hon. Yonah Martin]

Colleagues, I have to pause here to recognize that Dr. Zan, our third witness, has now joined us.

Dr. Zan, would you turn on your camera? We hope the sound will come through. We know that you don't have the headset we sent you.

We'll give you the floor at this time—if that's okay, colleagues—to hear from you.

Go ahead, Dr. Zan.