Download as PDF

THE STANDING SENATE COMMITTEE ON LEGAL AND CONSTITUTIONAL AFFAIRS

EVIDENCE


OTTAWA, Monday, February 1, 2021

The Standing Senate Committee on Legal and Constitutional Affairs met with videoconference this day at 10 a.m. [ET] to give consideration to the subject matter of Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).

Senator Mobina S. B. Jaffer (Chair) in the chair.

[English]

The Chair: Honourable senators, welcome. I am Senator Mobina Jaffer from British Columbia and I have the pleasure of chairing this committee.

Today, we are conducting a hybrid meeting of the Standing Senate Committee on Legal and Constitutional Affairs. This being a hybrid meeting, I ask everybody to be patient, as we may run into some technical issues.

[Translation]

Before we begin, I would like to make some practical suggestions that we think will help you participate in an efficient and productive meeting. Please keep your microphone muted during the meeting unless it is your turn to speak, in which case you may unmute it, and mute it again immediately after speaking. When you speak, please speak slowly and clearly. I also remind you that, when you speak, you must be on the channel of the language you are using.

[English]

Should any technical challenges arise, particularly in relation to interpretation, please signal this to the chair or the clerk, and we will work to resolve this issue. If you experience any other technical challenges, please contact the committee clerk. Please note that we may need to suspend during these times, as we need to ensure that all members are able to participate fully.

Senators, I will do my utmost to make sure that everyone is able to ask a question of the minister, but in order for me to do my job, I ask senators to try and keep their questions and the preambles to their questions brief. I know that most members of the committee will have questions of the panels, so may I ask please, that you do not signal to the clerk through the Zoom chat. Only signal to the clerk through the Zoom chat if you do not have a question. If you have a question, I will call on you. Otherwise, I will call upon all members for questions.

If you are not a member of the committee, please signal to the clerk if you have a question. Senators, I will try my utmost to accommodate you, but I anticipate the time to be short.

Today, we are tasked with studying Bill C-7, An Act to amend the Criminal Code (medical assistance in dying). As you know, we have three long days of meetings this week, culminating in clause-by-clause consideration Wednesday afternoon. I remind you all that if you have any observations, please give them to the clerk before Wednesday in both official languages.

We are beginning today with Minister of Justice David Lametti for 90 minutes. Then his officials will stay afterward. We will allow five minutes per senator for the questioning of the minister. Please note that we have officials for 90 minutes after the minister leaves, so please keep technical questions for the officials.

Minister Lametti, I want to thank you for being here today. I want to let you know it is not lost on us that this is the second time you have come to speak to us about the subject matter of MAID. We also very much appreciate that you are going to give us extra time today. We know we are going to learn a lot about the bill from your point of view.

I also want to welcome the officials from the Department of Justice, who are François Daigle, Associate Deputy Minister and Laurie Wright, Senior Assistant Deputy Minister.

[Translation]

Minister, I would like to take a few minutes to introduce the members of the committee taking part in today’s meeting: Senator Batters, our Deputy Chair, Senator Boisvenu, Senator Boniface, Senator Boyer, Senator Carignan, who is the critic of the bill, Senator Dupuis, Senator Griffin, Senator Harder, Senator Keating, Senator Kutcher and Senator Tannas. Senator Gold, de facto member, and Senator Martin, ex officio member.

[English]

We also have several non-members participating in this important Senate study: Senators Woo, Moodie, Seidman and Pate, Senator Petitclerc, who is the sponsor of this bill, and Senator McCallum.

Minister, you now have the floor.

[Translation]

The Honourable David Lametti, P.C., M.P., Minister of Justice and Attorney General of Canada: Thank you, Madam Chair. Thank you for the invitation to appear before you today to discuss Bill C-7, An Act to amend the Criminal Code (medical assistance in dying).

I want to recognize the considerable work the committee has already done as part of its pre-study of Bill C-7, during which you heard more than 80 witnesses, examined even more briefs and prepared a report outlining the many challenges and complexities involved in this issue. I would also like, first of all, to thank Senator Petitclerc, who sponsored the bill in the Senate, and assistant deputy ministers François Daigle and Laurie Wright.

My remarks today will focus on two points that figured prominently in the pre-study of Bill C-7 and in the debates on second reading in the House. Those points stem from the proposal to repeal the eligibility criterion for medical assistance in dying requiring that natural death be reasonably foreseeable.

The first point has to do with the concerns that certain persons with disabilities and many organizations representing their rights and interests have with respect to the potential negative impacts of the bill on persons with disabilities. The second concerns the exclusion from eligibility for medical assistance in dying of persons whose sole underlying medical condition is a mental illness.

[English]

For some individuals living with a disability and for numerous organizations that represent such persons, there’s a concern that eligibility without the requirement for “reasonably foreseeable death” singles them out as persons whose death can appropriately be facilitated, since a person with a disability could be eligible for MAID but a person who does not have a disability, illness or disease and who is not in an advanced state of decline and capability could not be eligible for MAID, no matter how much they were suffering.

This is viewed as a source of discrimination and stigmatization. Put simply, it is feared that disability itself would become a justification to end life. It is also feared that an assisted death would be easier to access than the care needed to live with dignity, and that some will choose death when they would rather go on living.

However, for other individuals living with disabilities whose natural death is not reasonably foreseeable, the requirement of a reasonably foreseeable death was seen as a direct violation of their autonomy and deprived them of access to their preferred means of relieving intolerable suffering.

The Superior Court of Quebec also found this to be the case. Let me be very clear: The Government of Canada absolutely believes that all lives are equal and of inherent value and that having a disability is not a justification to end life.

We are also mindful that intolerable suffering, some of which, tragically, cannot be sufficiently alleviated despite best efforts, or for which there are treatments that the person is not willing to undertake, can exist throughout one’s life.

Bill C-7 is grounded in the objective of giving autonomy to Canadians to relieve intolerable suffering associated with a medical condition when they decide they can no longer go on. We believe Canadians are best placed to make that determination for themselves.

[Translation]

Despite the challenges inherent in reconciling individual autonomy with the assertion of the value of all lives and the protection of vulnerable persons, I firmly believe that the other eligibility criteria, as well as the new safeguards proposed for persons whose death is not reasonably foreseeable, would help effectively address those concerns.

To qualify for medical assistance in dying, Canadians will nevertheless have to be capable of making decisions, making a voluntary request, particularly under outside pressure, and providing informed consent to receive such assistance. These elements protect the fundamental value of individual autonomy that is central to the policy on medical assistance in dying, or MAID.

Since the extension of eligibility to persons who are not approaching death constitutes a fundamental change in the policy on medical assistance in dying in Canada, the bill before you proposes a new set of safeguards, which are specifically designed for persons whose death is not reasonably foreseeable and who present greater risks.

[English]

As part of the development of Bill C-7, the Minister of Health, the Minister of Employment, Workforce Development and Disability Inclusion and I met with organizations and individuals speaking on behalf of persons with disabilities at round table meetings, held across the country in January and February 2020.

One of these round tables was focused precisely on disability rights and mostly made up of national and regional disability rights organizations. This legislation reflects concerns raised at these consultations, with the inclusion of a two-track system with greater safeguards, for those whose death is not reasonably foreseeable.

Let me address the safeguards where death is not reasonably foreseeable. First, the assessment period. The bill would first require an assessment period that must last a minimum of 90 days. It has been suggested that three months is too long for some, not long enough for others. I want to be clear on the purpose of this safeguard. This safeguard requires a minimum 90-day period to assess a person’s eligibility for MAID. It is not a waiting period for the person requesting MAID after having been approved, nor is it a mandatory minimum period for which the person must live with their medical condition before seeking MAID. Again, it is a minimum amount of time that the practitioners have to devote to the assessment of a person’s eligibility.

The 90-day assessment period provides a reasonable minimum time frame, taking into account the diversity of cases that practitioners may encounter. It is not meant to address any specific type of situation. We must remember that the measures proposed in Bill C-7, and indeed Parliament’s jurisdiction in the area, are matters of criminal law. As criminal law, these measures must set down a general framework of minimum standards for all MAID cases and not a series of specific rules that depend on the particular features of different types of medical conditions or the unfettered discretion of individual practitioners.

[Translation]

Bill C-7 provides for another safeguard, that the opinion of an expert be required in assessing eligibility. In its initial version, the bill would have required one of the two assessors to have expertise in the condition causing the person’s suffering.

According to the witnesses who appeared before the House of Commons Standing Committee on Justice and Human Rights, the experts are generally inclined to provide opinions in their area of expertise when consulted but rarely conduct full MAID eligibility assessments on their own.

The Committee on Justice and Human Rights therefore adopted an amendment requiring medical practitioners and nursing practitioners who conduct an assessment to consult a physician or nursing practitioner who has expertise in the person’s condition where neither of the assessors has the expertise in question.

That amendment received the government’s support since it is logical from the practitioners’ standpoint. It eliminates potential barriers to access to MAID yet still assists in achieving the protection objective of including in the eligibility assessment the medical practitioners’ knowledge of and expertise in the condition causing the person’s suffering.

The government’s view is that it is essential to ensure that all possible and reasonable means to relieve a person’s suffering be known before ending the life of a person whose death is not yet reasonably foreseeable.

[English]

Practitioner expertise will also help fulfill two other safeguards that target truly informed consent. These are, first, that the person be informed of means available to relieve their suffering and be offered consultations with professionals who offer relevant services and care; second, that the two assessors discuss such alternatives with the person and are confident that the person has seriously considered these means.

To be clear, there is no requirement that the person actually try any treatment or service that could alleviate their suffering. The government is of the view that requiring a person to have tried all reasonable treatments would go too far and would be inconsistent with the fundamental principle of autonomy. However, we do think it is critical that a person be informed of all reasonable treatments that are available and that the practitioners be satisfied that the person has given serious thought to these alternative ways of relieving suffering before their life has ended. This is consistent with one of the objectives of the bill, which is to alleviate the suffering of Canadians.

MAID is an incredibly serious action, with irreversible consequences, and its gravity is only amplified where the life that is ended could have gone on for decades yet. We must do more as a society to support those in our community who are suffering from a variety of complex and often intersecting reasons.

MAID is meant to be an exceptional avenue when nothing else is satisfactory to alleviate suffering. As a matter of criminal law, we must acknowledge there are challenges that cannot be resolved through Bill C-7, for example, guaranteeing access to health care or social services.

[Translation]

That being said, the proposed safeguards would help to strike a fair balance. They do not raise barriers to access to medical assistance in dying for persons who are determined to obtain it, but they will help ensure that no one obtains medical assistance in dying without enough time and attention being devoted to the vulnerabilities of each person and the options available in his or her medical situation.

That leads me to the second aspect I mentioned, the mental illness exclusion, where mental illness is the only underlying medical condition. I note at the outset that it is not my role, as Minister of Justice and Attorney General, to provide legal opinions to parliamentary committees, which, of course, have access to their own legal advisors and independent witnesses.

As you know, however, I have an obligation under the Department of Justice Act to vet government bills for any inconsistency with the Charter. It is my responsibility to prepare Charter statements respecting government bills.

Charter statements are not legal opinions. Their purpose instead is to provide the public and Parliament with legal information on the potential effects of a bill on Charter rights as well as considerations that support a bill’s consistency with the Charter.

Pursuant to my obligations under the Department of Justice Act, I tabled a Charter statement in connection with Bill C-7 on last October 21. That statement concerns the exclusion from eligibility for medical assistance in dying where mental illness is the only underlying medical condition.

[English]

The wisdom and constitutionality of this aspect of Bill C-7 have, as you know, been the subject of considerable debate both within Parliament and in the public domain. It is in this context that I propose to go through the considerations set out in the Charter Statement on this issue and to provide a little more information about the reasons why eligibility for MAID has been limited in this way.

As the Charter Statement indicates, the exclusion of eligibility for MAID where a mental illness is the sole medical condition engages the equality guarantee under section 15 and potentially engages the liberty and security of the person under section 7. Before I turn to the rationale for exclusion, it is important to note that the constitutional considerations associated with MAID for persons solely suffering from mental illness have not been conclusively addressed by the courts.

In Carter the Supreme Court of Canada stated that MAID for “persons with psychiatrist disorders” did not fall within the parameters of its reasons. Similarly, in the Truchon case in Quebec the court expressly noted that the evidence on MAID where mental illness is the sole underlying condition was of doubtful relevance, because both of the plaintiffs who were seeking MAID were doing so because of physical illness.

[Translation]

As regards the exclusion, it might be helpful to begin by describing what the exclusion is not based on.

Contrary to what some have suggested, the justification is not based on the assumption that persons suffering from a mental illness do not have the capacity to make decisions. A mental illness would not exclude a person from eligibility for medical assistance in dying if that person otherwise met the established criteria.

Similarly, the exclusion is not based on the idea that mental illness does not result in profound or grievous suffering, or that it is a lesser cause for concern than physical illness. To put it simply, the exclusion is based on a concern regarding the sole and grievous risk that medical assistance in dying presents in cases where mental illness is the sole underlying condition.

[English]

Following the legalization of MAID, the government asked the Council of Canadian Academies, the CCA, to conduct independent evidence-based reviews on three potential areas of expansion for Canada’s MAID regime, including mental illness as the sole underlying medical condition. The CCA report on mental illness reflects the deeply divided opinion and evidence in this area. Although the report does not come to a consensus view on the issue, it includes evidence and expert opinion to the effect that relaxing the prohibition on MAID in these circumstances would pose untenable risks, compromising the objective of protecting vulnerable persons.

I would like to touch on three areas of particular concern from the CCA report, all of which are also referenced in the Charter Statement. The first relates to the evidence on the challenges associated with screening for decision-making capacity in this context. While most people with mental illness have the capacity to make treatment decisions, some mental disorders can impair decision-making and increase the risk of incapacity. There is evidence that screening for decision-making capacity is particularly difficult and subject to a high degree of error in relation to persons who suffer from a mental illness serious enough to ground a request for MAID. This is because hopelessness, feelings of worthlessness and the wish to die are common symptoms of some mental illnesses. It can be difficult, even for experienced practitioners, to distinguish between a wish to die that is autonomous and well considered, and one that is a symptom of a person’s illness.

A secondary concern relates to the evidence on the nature and trajectory of mental illness. There is evidence that mental illness is generally less predictable than physical illness in terms of the course it will take over time. Many people with a poor prognosis will improve, at least in terms of their suffering and the associated wish to die. Although some will not improve, there is no reliable way of identifying these patients in advance.

[Translation]

The third concern is related to the data coming from Belgium, the Netherlands and Luxembourg, the few countries that permit medical assistance in dying where mental illness is the sole underlying medical condition.

Recent practice in those countries has raised concerns regarding both the increasing number of cases and the broad range of mental illnesses resulting in the provision of medical assistance in dying.

Based on current conclusive data, it is unclear whether a measure other than the proposed exclusion would help mitigate the significant risks and provide adequate protection for the vulnerable individuals who request medical assistance in dying on the basis of mental illness.

[English]

It has been our plan, as a government, to study mental illness as the sole underlying condition as part of the parliamentary review that will come in the future. For these reasons, it is my view that prohibiting MAID for persons suffering solely from mental illness is an option that is open to the government and is consistent with the Charter. There will be an opportunity to carefully examine this question and to consider new or emerging evidence, or new or emerging consensus in the medical community during the parliamentary review of the MAID legislation. I believe that is the most prudent approach at this time. It is our duty to enact clear legislation and to commit further to reflect on the issue through the parliamentary review.

Thank you. I look forward to the committee’s questions.

The Chair: Thank you very much, minister.

Minister, I was remiss. I did not introduce Senator Cotter and Senator Pate, who are joining us today.

[Translation]

Senator Petitclerc: Minister, thank you very much for being with us once again today and for the time you are taking to answer our questions.

[English]

Minister, I would like to hear about something that you have not mentioned in your opening statement, but we heard a little bit about it in the pre-study. It is considering Audrey Parker’s amendments and the waiver of final consent. Specifically, some have asked why the waiver of final consent applies to the individual whose death is reasonably foreseeable but not for an individual whose death is not reasonably foreseeable. I want to have your thoughts on that and on why this was the direction that the government has chosen.

Mr. Lametti: Thank you very much, senator. Again, thank you for your work shepherding this bill through the Senate.

The question is a very good one. The very limited Audrey Parker amendment, in fact, does only apply to the end-of-life scenario, and it was explicitly meant to apply only to the end of life scenario, because there was a large consensus, obviously. An incredible amount of sympathy was generated by Audrey Parker’s situation and like situations in the end-of-life scenario, in which we decided we could safely move on that consensus to allow this advance consent in a very restricted scenario, that is, where the person’s life was coming to an end.

In the non-end-of-life scenario, this is something that falls more clearly into the larger question of advance requests. That is something that has always been envisaged as being part of the parliamentary review. It was one of the other three issues that were raised in 2016 as something that required further review. There are some people who would like to see that kind of power extended well into the future. There are others, particularly with certain kinds of illnesses, who would not like to see that extended.

That, again, is something that ought to be looked at a lot more carefully. Again, we have the work of the CCA in that regard as well. But, for the time being, we were simply trying to respond to the Truchon decision on the end-of-life scenario and incorporate a couple of measures in the end-of-life scenario where there was a great deal of consensus across Canada including Audrey Parker’s amendment.

Senator Petitclerc: Maybe a quick one on the protection of conscience rights of our practitioners. You may have heard in the pre-study some have suggested that even requiring a health care professional to make a referral to MAID if it goes against their conscience might infringe their rights. What can you tell us about that?

Mr. Lametti: Thank you again for the question. Again, nothing in the legislation forces a practitioner to furnish MAID to another person. Remember that we’re talking about the Criminal Code and Criminal Code provisions. The referral provisions are generally made by the provinces under the auspices of their jurisdictional power over health care, and in view of the practical requirements and resources available at hand.

It is true that the Ontario Court of Appeal has decided that the lack of a referral would be a barrier to MAID in that jurisdiction, but, once again, we feel that the Criminal Code provision that we have put in place does not force anyone to participate in MAID. We feel that that is sufficient.

Senator Petitclerc: Thank you.

[Translation]

Senator Carignan: My question is for Minister Lametti. Minister, when Judge Baudouin rendered her judgment in Truchon, she granted the parties time to declare the provision unconstitutional. At paragraph 744, she held, and I quote:

…this suspension period will allow Parliament and the legislature to coordinate in order to avoid perpetuating the existing incongruities in medical assistance in dying in Quebec.

In March 2020, during the second extension, the judge granted more time and wrote at paragraph 15:

…the need to foster consultation and coordination with the provincial and territorial legislatures.

However, more than 16 months have elapsed since that declaration of unconstitutionality. I have received a copy of a letter that the justice and health ministers of the Quebec government sent you on December 15, 2020. It doesn’t appear from their letter that they were consulted. In fact, they told you they would like to work toward improving the bill and to share Quebec’s experience, particularly on the mental illness issue. Nowhere in the letter is it suggested that any exchange took place between you before Bill C-7.

Given that the judge had asked you to do that coordination and to speak to the legislatures, particularly in the Government of Quebec, to avoid the incongruities, did you have any discussions or exchanges with the Quebec government concerning Bill C-7 before the bill was tabled and adopted in the House of Commons?

Mr. Lametti: Thank you for that question, senator. I can assure you that I am in touch with my counterparts in Quebec City. I was part of the team, as it were, that developed Bill C-7. We were in direct contact with the two ministers responsible in Quebec at the time. This is a work in progress, but there was some dissatisfaction with our efforts at the time before the original bill was introduced. We are still prepared to work on the mental illness issues with the provinces and territories, including Quebec. I initially had discussions with the minister at that time. As I mentioned in my introductory remarks, we believe for now that the responsible approach is to address this question as part of the parliamentary review process, and we will obviously be in talks with the provinces and territories on the mental illness issue at that stage.

Senator Carignan: My second question concerns the mental illness exclusion. When you testified here the first time, we spoke to you about the Supreme Court’s judgment in G, which had been rendered previously, and which held that mental illness could not be excluded. Differential treatment between individuals who have a mental illness and those who do not is a violation of section 15 of the Charter. Furthermore, that differential treatment perpetuates discriminatory perceptions or imposes or exacerbates an unjustified disadvantage on persons suffering from mental illness.

In your previous testimony, your justification for the mental health exclusion was to say that you didn’t have the time and couldn’t go into the matter. Today you’re telling us that it’s because consent and prognosis are difficult matters regarding certain illnesses. So you’re being slightly more precise, and I see you’ve spoken to your officials.

During the pre-study hearings, the experts told us exactly the opposite, that it was possible to assess the quality of an individual’s consent. We are also much more efficient with prognoses; we’ve received testimony on that point. Why continue to exclude an entire group of persons with mental illness when the evidence now before us is that it is possible to draw distinctions where the illness precludes free and informed consent?

Mr. Lametti: Thank you once again for that very important question.

Above all, we share the concern that mental illnesses should be treated in the same way as other illnesses. We are aware of the fact that they are diseases. I believe our point of view is the correct one.

That being said, we believe that the judgment the Supreme Court rendered last December is consistent with what we are trying to do. My justifications haven’t changed. We’re working with experts and with our legal teams. I am committing to work with you to find solutions during the next stages.

We do anticipate that it will be a temporary prohibition. We’ve received the same evidence as you, but we also have other evidence and other opinions from experts who have said it is still very difficult to assess mental health cases. So there is no consensus. Perhaps consensuses are emerging, but this is an issue for the next phases. We are prepared to address the real challenges and to find solutions. Personally, I am prepared to work on that, and I can speak for the government in saying that we are prepared to address these kinds of issues. However, that must be done based on all the evidence and by working with the medical community across the country. As I said, we have contrary evidence before us, and there is therefore no current consensus. However, I am optimistic; I believe we can achieve consensus, but we’ll have to work on it.

[English]

The Chair: Before we go to the next person, may I please ask senators to keep their preambles short? Otherwise I will be forced to proceed without the minister answering so that everybody can ask a question.

Senator Batters: Minister Lametti, you provided our committee with a Charter analysis that justifies the Charter compliance and constitutionality of your mental illness exclusion in Bill C-7, but the one page in your Charter Statement about this topic does not mention what is likely your strongest argument to justify excluding mental illness from MAID, and that is that almost without exception mental illness is not irremediable. This is key.

As such, mental illness as a sole condition does not meet one of the essential criteria for MAID eligibility in your government’s legislation. Please tell us more about how this important “irremediability” factor fits into your Charter analysis and justifies the constitutionality of your mental illness exclusion in Bill C-7.

Mr. Lametti: Thank you, senator, for your question. Let me begin by saying that we as a government recognize, I recognize personally, the profound nature of mental illness and its status as an illness. I’m certainly in favour of dedicating increasing resources to its studying and its understanding.

The Charter analysis that we have provided represents the uncertainty that the medical community expressed to us on this issue with respect to moving forward at this time. It reflects a number of concerns you have raised, but it also reflects other concerns that were raised, including concerns that were going in the other direction. Our point is that this needs to be studied more carefully. I’m not a doctor, so I’m not going to weigh the various — there are some doctors present on this committee, including people with expertise, so I’m not going to weigh the two of them, but I am going to commit to looking at the various concerns that you have raised, various concerns that others have raised and to working in good faith to see where this might land at the next step. I’m not committing to an outcome, but I am committing to a process and that it be done in good faith and with, as I said, the appropriate — the more than appropriate — measure of sensitivity towards mental illness and those who live with it, those who have lived with it and those other people around persons with mental illness. That is important to do.

Senator Batters: Thank you. Minister Lametti, you also provided us with your government’s gender-based analysis plus, GBA+, document for Bill C-7, and I note that it references Dr. Scott Kim’s study, but it does not state the alarming fact contained in Dr. Kim’s study that 70% of cases of psychiatric MAID in the Netherlands are women. This is a key fact to note a Bill C-7 GBA+ document.

Also in assessing why men are three times more likely than women to die by suicide overall, your GBA+ document omits another important fact, and that is a major reason why completed suicide rates are so much higher for men is that men use more lethal means to attempt suicide. However, MAID eligibility provides guaranteed lethal means. I would submit, minister, this needs to be part of your gender-based analysis on Bill C-7’s mental illness exclusion, and I’m asking you to please agree to consider including that.

Mr. Lametti: Thank you for that important question. I will take that back to my officials, and I think that that inclusion is very possible.

Senator Batters: Thank you.

The Chair: Senator Batters, your time is over. I will put you on the second round.

Minister, I also have a question on the gender-based analysis, and I want to sincerely thank you and the Prime Minister. You have taken gender-based analysis seriously. I want to commend that not only have you taken it seriously, but you have also released it to parliamentarians. My record is clear. For years and years, I asked many governments if they had carried it out and if they would release it. You’re the first minister to do it so bravely, and I really commend you for that.

Minister, when I asked you whether you would release the gender-based analysis, you said you would and you did. I asked you if race-based analysis was carried out separately, and you said no, that it was part of the gender-based analysis.

I have looked carefully at the analysis, and on page 2, first paragraph, it says the federal monitoring regime does not collect information about individual income, education level, ethnicity and gender diversity. And that was only speaking for the demographics. There is no other reference at all about race-based analysis.

Minister, we have just had a terrible year, since last July, on issues facing race, and even all the issues that have faced race, there is nothing in this analysis about race-based analysis. I don’t want to get into a banter with you, but on this day of Black History Month, may I please get a commitment from you that from now onwards there will be a serious race-based analysis in the gender-based analysis or a separate one?

Mr. Lametti: Thank you very much, senator. It is indeed the first day of Black History Month, and I share your concerns.

I commit to doing my best, to doing better. The serious problem that we have across government, which has been illustrated in a number of different contexts, including this one, as well as our response to COVID-19, is the lack of disaggregated data. The challenge across government is to get better data, to have disaggregated data that allows us to answer the kinds of questions that you’re asking and to do the kinds of race-based analyses that are absolutely necessary.

It’s a problem that we are aware of in government, and we’re trying. Statistics Canada is aware of it, and we’re committed in a number of different ministries and departments across government to do a better job getting disaggregated data and to get the consent of the provinces to help us where they’re the ones holding the data particularly in health care scenarios.

We will work harder on that. We all need allies — we need allies in this particular quest as well — and we will do better.

On another race-based issue, we did our best in the time that we had to reach out to Indigenous peoples, representatives of Indigenous peoples, across Canada with respect to MAID. There is always — in part because of data, in part because of complexity — a better job that can be done. We’re continuing to get better at it, but I want to assure you that we did make best efforts to do that here.

The Chair: Minister, when you talk about allies, I very clearly remember that when the Black caucus was meeting, and we were struggling with the issues from July onwards, you were there and you were supportive. I know you’re very serious about this. That’s why I didn’t want to get into a banter with you regarding the nonexistence of any race-based analysis. But one of the things — and you’ve put your finger on it — that really bothers me is when government officials look at data and they look at data in the United States. We are very different, and I think one of the greatest things you could do is start a database for race-based analysis. You’ve already said that, but please do not bring U.S. data, because that’s almost insulting because our realities are different.

Thank you, minister.

Senator Harder: Thank you, minister. During the committee’s pre-study of this bill, a number of witnesses suggested that in this case it would be appropriate to allow the Quebec Superior Court suspension of invalidity to lapse. The Truchon decision would then apply only in Quebec and it would create a legal vacuum around the issue of reasonably foreseeable death.

In their view, legal vacuums are not uncommon, nor is it uncommon for court decisions to apply only in the province in which it was rendered. What are your thoughts on this perspective?

Mr. Lametti: Thank you, senator, for that question — again, an important question. I disagree with the view that you have repeated here. There are a number of reasons why.

First of all, again our domain here is the criminal law, and we would want the criminal law to apply in a uniform fashion across Canada; and we would want medical practitioners practising MAID — particularly in Quebec but also in the rest of the country — to be able to do so with certainty that what they are doing is not in any way contrary to the criminal law. It’s the most serious hammer, if you will, that the government has, a government has. It represents the most serious kinds of crimes, and we therefore don’t want that uncertainty as a matter of general concern.

The other thing I would say is that the point of passing this particular bill right now is to reduce suffering. That is something we wanted to address both in Quebec, the suffering that Jean Truchon was going through, and Nicole Gladu. But there are also other provisions that would not be available then if we didn’t pass this legislation.

We have Audrey Parker’s amendment. We have taken out some of the impediments in the end-of-life regime that medical professionals across Canada — and people who have gone through MAID with family members — told us, univocally, that they serve no purpose, the 10-day waiting period, for example.

The benefits of this particular piece of legislation would be lost on part of the population. So it is worth doing this. It is worth passing this, I think, positive piece of legislation, this positive step, as we move forward to look at, in a parliamentary review, remaining issues and as Canadian society evolves with respect to this issue.

Senator Harder: Thank you very much. I share your view. I want to ask the same question with perhaps a different angle. I, like many senators, have received an overwhelming number of emails from individuals and groups saying that we should defeat this bill. Could you tell us clearly what the consequences of defeating this bill would be?

Mr. Lametti: Thank you for that question. First of all, in Quebec there would be an end-of-life regime that would be possible for MAID, but there would also be a non-end-of-life regime that would be possible for MAID without any safeguards in the system.

But in particular — if you have heard the concerns as I have heard the concerns of people living with disabilities — we constructed this regime in this bill precisely based on the comments we heard from their leadership groups that a second track in the non-end-of-life regime, with additional safeguards tailored to the questions of where end of life is not in view, were important to them. This is a very meaningful critique from the leadership of the disability community. Those safeguards would not be present in Quebec, and that is hugely problematic.

I’ve mentioned the lack of coherence in the criminal law across Canada. That, too, is hugely problematic, in my view. And in the other nine provinces and in the territories, if we defeat this bill, people in the end-of-life scenario — first of all, there would be no non-end-of-life scenario there either — but in the end-of-life scenario they would lose the benefit of things like Audrey Parker’s amendment, which are serious improvements in this act and are precisely there to reduce people’s suffering.

Senator Harder: Thank you.

Senator Martin: Thank you, minister. I think all of us have come to appreciate the importance of protecting the rights of Canadians in what we’re talking about with this bill and the importance of this bill.

I’d like to look at the rights of those who are going to be administering. Minister, the issue of conscience protection was raised repeatedly throughout our pre-study. Ontario physicians are mandated to provide an effective referral, whereas the Canadian Medical Association called it the endorsement of a procedure to patients.

When you were asked about this during our pre-study, you referenced the clause in Bill C-14 and said that safeguard is still there. But we did hear from witnesses otherwise, who were still concerned. Clearly, when physicians are being required to participate, no such safeguard exists.

We heard from Indigenous physicians and nurses and other conscientious objectors who simply believe this practice is in contravention of their morals or ethics as medical practitioners.

Minister, are you concerned about the practitioners who have indicated that they will leave the country or this profession if this bill passes without explicit conscience protection?

Do you recognize the role that the federal government — who has created this paradigm-shifting regime — has in protecting the ethical integrity of its physicians?

Mr. Lametti: Thank you very much, senator, for that question. Let me reiterate that conscience is protected already in this piece of legislation, as it was protected in the original bill, C-14, in 2016. No one is forced to participate in MAID as a health practitioner, and that remains an inviolable provision in this act.

As I had stated — and this is true in other cases, for the provision of other health questions; the abortion issue immediately springs to mind — certain provinces will make decisions with respect to a referral policy, depending on their resources and their availability. This is a point of balance, but the Supreme Court has held in the Carter decision that a person does have a right to medical assistance in dying as a matter of right, as a matter of a Charter right, and the state — and in this case the provinces who provide health care services — has an obligation to provide that service, and they will decide in terms of how to do it. But there is clearly no province that I know of that requires a health care practitioner to participate in MAID. That is enshrined in our legislation as a matter of right for practitioners.

So I think the balance is quite well struck. We didn’t have an exodus after 2016 of medical practitioners from Canada. We had a group of medical practitioners who began to develop expertise in MAID. We heard from them in the course of our consultations. They did not raise that issue. They’re more concerned about clarity of the law, quite frankly, and they gave us very constructive suggestions moving forward in terms of how to meet the Superior Court challenge in Truchon, as well as how we might improve the act now. So I’m not worried about an exodus of medical practitioners, and we’ve done our very best to make sure that the rules are clear.

Senator Martin: Minister, we’ve heard from medical professionals. I’m in B.C., and in 2016, it was new. But since then, we are seeing other concerns. I hope this is something you will consider.

On this point, we also heard from many Indigenous witnesses who told the committee that the consultation was wholly inadequate. Perhaps if it had been more extensive, your government would have been more understanding of the need to protect the conscience rights of Indigenous physicians.

Did your government consult with Inuit or Metis physicians and nurses and the communities? Can you elaborate on that specific process? Did you consult with any Indigenous Canadians with disabilities?

The witnesses who testified before this committee indicated that you had not adequately done so.

Mr. Lametti: Thank you for that question senator. I provided Senator Jaffer with an answer to our consultations.

We did do our best in the time that we had, in the period that we had, to reach out and consult with experts in the Indigenous context. I would reiterate that nothing in this act requires any practitioner to participate in MAID.

To the extent that there may be spiritual or cultural objections to MAID, nothing in this act requires a practitioner to participate. Nothing in this act requires anyone to seek MAID. It is an autonomous decision for the patient as well.

Obviously we, as a government, are committed to reconciliation — we’re committed to meaningful consultation with Indigenous peoples across Canada — on a distinctions-based approach. So, with respect to Inuit, Métis and First Nations, we did our best in this context to do that. Could we have done better? One can always do better and we’re always open to suggestions on how we might do it better next time.

But I’m satisfied with the content of the suggestions that we got from our interlocutors who were both Indigenous and non-Indigenous but familiar with the Indigenous context.

Senator Boyer: Thank you, Minister Lametti, for your presentation today. Thank you to Senator Martin for bringing up the topic that I’m going to talk about as well.

During the consultations that we had with Indigenous people on the pre-study and Bill C-7, many common concerns were not addressed in this bill. Among those shared concerns is that an Indigenous person may feel like they may have to choose MAID due to the lack — [Technical difficulties]. My question relates to the effectiveness of the safeguards found in subsection 3.1 (g) and 3.1 (h) of Bill C-7 that require a medical practitioner to ensure that the patient wishing to access MAID has been informed of all the means available to them to relieve their suffering and has given serious consideration to these alternative means.

In the context of unequal access to health care that primarily affects those who would be most in need, how will these subsections serve as truly effective safeguards for all Canadians, including Indigenous peoples?

Mr. Lametti: Thank you for that question, Senator Boyer. Again, it is profoundly important in the larger context of how we deliver health care across Canada and our aspirations to do a much better job with it.

I certainly share the view that we need to work with provincial and territorial governments to ensure that the delivery of health care is improved across Canada and that, particularly in remote northern regions of the country and particularly in Indigenous communities, that health care delivery be done better.

I work with my colleagues around the table — Minister Miller and also Minister Qualtrough — with respect to the disabilities aspect of it to make sure that we’re pushing as hard as we can for what can be done by a federal government to aid, promote, provide resources, et cetera, to make sure that health care is of the highest standard. Also, we work with the provinces, obviously, because it is their jurisdiction.

I fully share that. This bill — this projet de loi — in front of us is about autonomous choice and making sure that individuals are aware of the options that they have to live with dignity or to choose MAID based on their condition and based on their evaluation of that situation. That’s the role that I have. I’m hoping that this piece of legislation will provoke the kinds of discussions that need to be had where the provision of a meaningful alternative, for whatever reason, isn’t up to the standard it should be.

I think those discussions are already beginning to happen, which is a good thing. Hopefully we can move the dial with respect to the examples that I think are the most obvious: the provision of health services in remote northern and Indigenous communities as well as the provision of services to the disabled. Hopefully these will improve, having been, I think, nudged along by this piece of legislation.

Senator Boyer: Thank you very much for that answer. I hope to see that as well.

[Translation]

Senator Keating: Thank you for being here with us this morning, minister. I’m grateful to you for taking the time to answer questions. It’s very helpful. Minister, Senator Carignan asked the question that I had in a much more eloquent way than I could have done. You answered it, but you said in your answers that many experts have also said it’s difficult to analyze mental illness and these questions about mental health patients’ freedom to make choices about MAID. However, the difficulty, in my opinion, is that the act or the amendment to the act fails to define mental illness and thereby, I believe, excludes certain illnesses and thus the right to choose and to provide MAID. I was wondering whether, in the review of MAID, you intended to examine the actual definition of what constitutes mental illness. Thank you.

Mr. Lametti: Thank you for your question, senator. Yes, of course, the next step is to examine the definition itself. For the moment, I would like to emphasize that it’s now excluded in this bill solely where mental illness is the only underlying condition. There are obviously examples in which mental illness is combined with other conditions. Those types of circumstances are not excluded in the bill. This is a fairly narrow exception, but it’s true that we must absolutely examine the definition. We have to reach a consensus on the practice and also find a way to frame the practice in the Criminal Code. So, if a consensus emerges regarding mental illness, how do we frame it in a bill? These are tough questions.

Senator Keating: Thank you. I can agree with that. I certainly acknowledge that we’re just talking about people suffering solely from mental illness, but we have to know what constitutes mental illness so we don’t include diseases that, in principle, clearly should make MAID an option that can be offered. Thank you.

Mr. Lametti: There’s currently no definition, but we’re talking about diseases that require psychiatric care. So that’s not satisfactory; we’ll study everything properly.

[English]

Senator Cotter: Minister Lametti, thank you for joining us a second time for our consideration of this important, difficult, maybe profound piece of legislation, as you noted yourself.

You also noted, I think wisely, a series of what I guess might be called policy choices to try to work through the challenges of proper safeguards, proper choices and the like. I want to say I respect those choices. I think we can offer advice back to you and your officials and the Government of Canada, but many are policy choices.

As you noted, this is a criminal law, a big law, an important law in Canada, but there is a bigger law and that is the Charter of Rights. I think some of the questions presented by this bill have constitutional implications.

It’s fair to say that we can anticipate constitutional challenges, whatever is the outcome of this bill. In the doing of that, when people do make those challenges, they will bear the burden — the financial, the time, the emotional stress of advancing a constitutional argument that this bill goes too far or doesn’t go far enough. Mental illness is obviously one dimension of it as a sole underlying condition.

As you’ll know, some have suggested that a constitutional reference could be an appropriate way of addressing those concerns, which will inevitably come even after the outcome of a review. That would enable the Government of Canada to carry on the responsibility of addressing the parameters of the constitutionality of the legislation.

Would you be able to speak to some of the considerations that you and the Government of Canada have given to that option of stating a constitutional reference and why, to date at least, the Government of Canada has not taken that choice? Thanks.

Mr. Lametti: Thank you very much, Senator Cotter, for your question and your work on this issue.

We are aware that there are potential constitutional issues. We flagged them in the tabling of the Charter Statement before the House of Commons.

We, obviously, have considered a reference to the Supreme Court of Canada. My goal in all of this is to get through this step as expeditiously as possible in order to most quickly reduce the suffering of the greatest number of people. A constitutional reference also takes time. We think that we have, in this particular piece of legislation, come much closer to being on all fours with the Carter decision, which was a decision of the Supreme Court of Canada and which is our sort of guiding touchstone, if you will.

I think that this is a more expeditious way forward to quickly alleviate the suffering of people. Yes, there will be potential challenges, but we think we’ve narrowed the field both in terms of scope and also in terms of time because we will, I hope, get to the next step, which is the parliamentary review. That will look at the other outstanding issues in an expeditious way, in a thoughtful way. Therefore, we’ve really narrowed both the scope and the time frame for those constitutional challenges. I think we’ve done it relatively effectively and efficiently in order to minimize the suffering that people will go through.

But I take your points. It always remains an option, but I’ve never been convinced that it was our best option.

Senator Boniface: Thank you, minister, for being here. Senator Harder asked my first question.

The second question: You made reference to the parliamentary review in a number of your answers. Since you were here in November, have we made any progress on that? As you know, this is a matter that many of us feel is urgent and overdue. Do you have any update on that?

Mr. Lametti: Thank you, senator, for the question. I don’t have a formal update. I can tell you that I do my best to convince our house leader. It’s a matter of negotiating across two houses and multiple political parties of different types in both houses. We’re committed to doing it. I can’t give you any details on what form that parliamentary review will take, but I have been pressing to the best of my abilities to be in a position to make that announcement as soon as possible.

Again, I think it’s important. I share your view that it’s critically important to have an idea of how we will move forward across both the House of Commons and the Senate and to ensure that we have adequate time to work with experts and work with each other, quite frankly, in order to get the next stage done. I’m sorry I can’t give an answer on the actual vehicle at this stage.

Senator Boniface: Thank you, Madam Chair. That’s my question.

[Translation]

Senator Boisvenu: Good morning, minister. I have two questions for you.

The first concerns the adoption of Bill C-14 in 2016. Your predecessor promised the Senate she would be amenable to amendments to the bill, which was done by the Senate. I think the Senate at the time had proposed some very good amendments. However, none of those amendments were accepted once they reached her office.

Minister, when the Senate adopts this bill, will you be open to receiving the amendments that we make to improve it?

Mr. Lametti: Thank you for your question, senator.

Yes, I am always open to amendments. I will assess them in good faith and discuss them with the Senate. In my two years as minister, I believe I have sincerely shown the Senate that I was open to improving bills by collaborating with you on other bills in the past.

However, that’s not a guarantee that I’ll agree with the amendments put forward, but I promise I’ll assess those amendments and work with you.

Senator Boisvenu: Thank you, minister.

The only part of your answer that troubles me is that you’re not guaranteeing you’ll accept those amendments; that’s virtually the same answer as your predecessor gave.

In another connection, with regard to power of attorney requests for MAID, will this bill be expanded to include people who suffer from degenerative mental illnesses? I’m thinking of those suffering from Alzheimer’s disease. On that topic, I invite you to read an article that was published in this morning’s La Presse concerning Sandra Demontigny, who has just learned she has contracted that disease. Her father died as a result of it at the age of 53. She has three children aged 14, 18 and 22, and she wants to ensure that this bill will allow her to authorize via power of attorney — or proxy, so to speak — access to medical assistance in dying. Otherwise, she will have to travel to Switzerland — as many other families have had to do in recent years — and spend as much as $40,000 for that service.

Will this bill guarantee that families who have a member suffering from Alzheimer’s disease can authorize medical assistance in dying via power of attorney?

Mr. Lametti: Thank you, senator.

I am aware that many Canadians across the country would like to have access to that option. For the moment, it would be part of the next phase because it’s impossible to provide for that kind of power of attorney under this act. We made provision for the Audrey Parker exception in the end-of-life regime, but we can’t go any further in this bill.

That being said, the subject was addressed in 2016. Studies were commissioned because, as you know, there are people across Canada who would like to have access to it. We’ll have to discuss it during the parliamentary review.

Senator Boisvenu: Are you aware you’re forcing these families to turn to other countries or to an American state for access to those services, to spend enormous amounts of money and, potentially, as we’ve seen in the Quebec media, to commit suicide?

I would say to you, minister, that time is running out for these people. You should take the opportunity that Bill C-7 affords to offer death via power of attorney to these families, especially those suffering from degenerative diseases such as Alzheimer’s which result in terrible deaths. I think that would be a humanitarian gesture on your part.

Mr. Lametti: I feel considerable empathy listening to what you just said. I understand the situation. We started our online consultations precisely so we could ask questions about degenerative cognitive diseases. We’ve started the work, but it’s very complex. I’m very sympathetic to the suffering of these people. We need to act as soon as possible.

That being said, we have to be careful in striking the necessary balance and establishing safeguards. We have to look at the experience of other countries. I understand the suffering of these people. It’s hard, but, for the moment, it’s something we must study properly in the next phase.

Senator Dupuis: Good morning, minister. Thank you for being here with us today. At the start of your speech, you discussed new, enhanced safeguards — that’s the term you used — where death is not foreseeable. In your view, the risks are greater in those cases. What risks do you mean? I hadn’t heard you speak in those terms before. Why these enhanced safeguards since the risks are greater when death is not foreseeable? What are those risks? Thank you.

Mr. Lametti: Senator, thank you once again for your commitment and your question. They are risks faced by certain segments of our population, particularly those with a disability who feel some scepticism about a non-end-of-life regime. It must be understood that they view this possibility as an existential fear, that life with a disability will always be considered and treated as less valuable and less in need of protection.

What we tried to do with the non-end-of-life regime was precisely to use safeguards to strike a balance ensuring that a person exercised genuine autonomy after being informed and understanding options for living or choosing medical assistance in dying. They are enhanced in that sense. These are not necessarily issues that are raised in the end-of-life regime. The typical case is that of a person with advanced cancer. That doesn’t present the same challenge for people living with a disability, for example, as the non-end-of-life regime.

Senator Dupuis: So what you’re talking about are expressed fears. These aren’t factual risks that can be observed. They are people’s apprehensions, because we’ve heard them in the committee. There are apprehensions, and then there’s reality. Experience in Quebec shows that people are far less apprehensive because it has been shown that the regime is properly administered.

Mr. Lametti: We are evolving on the possibility of medical assistance in dying. The country has changed considerably since 2016. There is an acceptance of the practice. We saw that during the consultations. We can see it now from the discussion we’re having here. I think the same will be true of the non-end-of-life regime. We need data. We have to continue monitoring the situation. We have to continue talking to people with disabilities. We have to continue evolving.

I sincerely think a balance has been struck in dialogue with the leadership of the disability rights group. That’s something that acknowledges the fact that a person is entitled to medical assistance in dying. I think we’ve achieved a fair balance. That’s obviously something that could evolve in future.

Senator Dupuis: Can you tell me why you excluded or provided for the consent waiver solely in cases where death is foreseeable? Why not establish the option to waive consent in all cases?

Mr. Lametti: We think that falls under the heading of advance requests. It’s something that was identified as a topic for review during the parliamentary review. As I said in a previous answer, yes, there is a lot of popular support across the country, but there are also certain risks, and they are not unanimously acknowledged. There is still no consensus on that.

We introduced the Audrey Parker exception because there was a consensus on it, and it was under the end-of-life regime. Before offering the option in non-end-of-life regimes, we must first properly address the issue of advance requests together with experts and practitioners. This is something certain practitioners are very uncomfortable with.

[English]

Senator Griffin: Thank you, minister, for being here today. I have three quick questions. First of all, could you provide an exact date when Bill C-7 needs to be approved by the Senate so that the cabinet has an opportunity to consider any Senate amendments?

Mr. Lametti: Thank you, senator, for that question. I usually in prudence leave questions of dates up to my house leaders. As well as I see Senator Gold, from time to time, in one of the Hollywood squares in front of me as we’re speaking.

That being said, we’re obviously working backwards from the date for Royal Assent that has been extended to us by the Quebec Superior Court. I would hope you would get it back to us with time for cabinet to look at it and possibly the House of Commons to vote on it if necessary. So I would just say please give us sufficient time, if you are considering amendments. I have said in good faith we will look at those amendments and we will, in dialogue with you, see where we land, without promising any specific result. But I will leave it to Senator Gold to work out with you and with his counterparts in the House of Commons to make sure that we can get this done.

Senator Griffin: Thank you. Will your government allow for the government backbench to have a free vote on any Senate amendments?

Mr. Lametti: Again, I’ll leave that decision to the Prime Minister. This is a government bill, so it’s often the case that with government bills we compel a vote, but it’s also the case that it is one that has a conscience dimension to it, so those kinds of cases are often left to a free vote as well.

I’ll leave that up to the Prime Minister with respect to amendments.

Senator Griffin: Okay. My third question is, will your government be open to the Commons itself making any changes to the government message regarding Senate amendments?

Mr. Lametti: To be perfectly honest, senator, I’m not quite sure what you mean by that question. I certainly have always had a very respectful view, as a member of the House of Commons, to Senate amendments. I can think of a time when I was very supportive and happy that the Senate succeeded in a way that I hadn’t as a member of the House of Commons.

I don’t know that there is a policy view with respect to Senate amendments. I know that in my party, you will find supporters for Senate amendments on various issues, but I don’t quite know exactly what you mean by that.

Senator Griffin: Okay. We’ll leave it at that. Thank you.

The Chair: Minister, you’re almost at the end of your time. On behalf of our committee, I’m going to ask if you would be open to a few more questions, or do you have to rush? I respect either way. I’m not trying to put you in a difficult position.

Mr. Lametti: I can take a few. I am expected at another cabinet committee right now, but I know the agenda, so I think I can handle a few more questions.

The Chair: I sincerely appreciate it.

[Translation]

Senator Miville-Dechêne: Thank you for your answers. You mentioned Belgium when you said we weren’t ready for specific legislation for individuals suffering solely from mental illness. I’d like to cite the Belgium example in connection with other lessons or issues we might consider.

A euthanasia regime — as the medical assistance in dying regime is called in Belgium — has been in place for 18 years, and, in addition to the fact that the act is relatively strict, its administration is also a problem. The criterion of intolerable pain — we are all in favour of pain relief, myself included — is no longer the absolute criterion for granting medical assistance in dying, and authorities have come up with the idea of being “tired of living” for older individuals who are blind or have hearing problems. I’d like to hear what you have to say about the potential for abuse there. It’s one thing to draft clear legislation and quite another to administer it. Abuses have already been committed in connection with the end-of-life criterion. Are we running a risk of abuse by expanding the act now, before we’ve formed an actual idea of what’s happening on the ground?

Mr. Lametti: Thank you for your question, senator. First of all, I should point out that there are differences between our bill and the current regime in the Benelux countries. The first is the criterion of a person’s medical situation, which is characterized by an advanced state of irreversible decline in capability. Being “tired of living” is not a possible assessment criterion here. Based on my conversations with physicians and other specialists, I can tell you this is a very important criterion.

That being said, we have, in a way, a broader possibility, and by that I mean we do not require every possible treatment. We require only that the person be informed of reasonable treatments. As I said, being tired of living is not a criterion here. In that sense, this is much narrower than the regime in place in the Benelux countries.

I’d like to add that we closely monitor — we’re already doing this with the provinces, particularly Quebec, whose regime is quite extensive — cases in which medical assistance in dying has been provided. We intend to continue this process and to collect data. I think the fear you refer to is that we’ll fall into a situation in which the criteria will be applied to a lesser degree or less rigorously. We will monitor that closely to ensure that’s not the case.

Senator Miville-Dechêne: Thank you, minister.

[English]

The Chair: On second round, may I ask everyone to ask a short question so we don’t impose too much on the minister. Thank you.

Senator Pate: Thank you. Minister, in Carter, the Supreme Court of Canada explicitly limited its judgment to the plaintiffs before the court who are at the end of their lives. Justice Smith did as well. Disability groups and the UN Special Rapporteur on disability and extreme poverty have told us repeatedly not allowing MAID for people with disabilities at the end of life is contrary to equality rights under the Charter and contrary to the Convention on the Rights of People with Disabilities and Canada’s international obligations.

Given that the convention requires states to consult with representative disability organizations, and given that members of the disability community have also criticized the breakneck speed of the government’s roll-out of Bill C-7 as inherently ableist, I have two questions. First, how do you understand that critique? What does it mean to you and how do you propose to respond, other than just the response of one judge in Truchon?

And also, minister, you say that the Criminal Code must be consistent in every province. How do you respond to the fact mandatory minimum sentences, the provocation defence, consecutive parole ineligibility, conditional sentence orders and extreme intoxication are all applied differently in a number of provinces? Thank you, minister.

Mr. Lametti: Thank you for the question, Senator Pate. With respect to the second part of the question, those situations are not ideal and they are on my radar, if you will.

Senator Pate: We have a bill that you could use.

Mr. Lametti: I believe I knew that. With respect to the very legitimate concerns raised by the disability community and their leadership and with respect to the United Nations report, we feel this legislation recognizes the autonomy rights of persons living with disabilities. We have worked with the disability community, and indeed, the very architecture of this piece of legislation, the fact that there are two streams, is a direct result of the advocacy of the disability community, who made it clear to us that in the non-end-of-life regime, additional safeguards were required.

So it’s precisely in the architecture of this act that we are responding to the, I felt, very meaningful consultations that we were having with the leadership of the disability community. We met with them in round tables across the country. We had a specific round table with them. I attended another conference with other colleagues that they organized specifically for this issue. I think there was a great deal of influence on this piece of legislation that was had by the disability community, and I think we’ve reached a good balance. Again, I think it is a testament to the impact that they had.

I work with my colleague Minister Qualtrough with respect to improving the lives of disabled people across Canada and the choices they have, in valuing their lives and in fighting against the ablest biases that we have in our society. I better understand them now after working on this project for the past while.

Am I perfect? No, but we’re all doing our best to get to a better place.

I think that this bill largely avoids the pitfalls that the United Nations report has. It’s not simply enough to be disabled to get MAID. There are other criteria that have to be fulfilled, and I think that’s an important part of understanding that this is about autonomy. It’s about balancing. It’s about, obviously, creating a regime in which the rights of the disabled are protected, but it is also very alive to the fact that many disabled people told us that they wanted to have this choice should they fit into the allowed criteria.

Senator Kutcher: Thank you, minister, for being here and for taking the extra time. It’s very much appreciated.

In light of the widely raised concerns about the exclusion of mental illness as the sole underlying condition for both constitutional and psychiatric grounds — expressed both in the committee’s pre-study and widely elsewhere — would you be willing to accept a sunset clause amendment to the aligning section of the proposed legislation to allow the additional work that needs to be done in a timely way?

Mr. Lametti: Thank you, senator, for your work on this issue and your leadership on this issue. It’s very much appreciated. I will commit to looking at any amendment very carefully in good faith and working with you. I can’t promise a result. I can promise that I will also work in good faith to make sure that however we undertake the question of mental illness as a sole criterion that we will do it expeditiously and sensitively. But I will wait to see what your amendments are and I will work with you in good faith.

Senator Batters: Minister Lametti, on that same topic, a few days ago we had Bell Let’s Talk Day, and during our committee’s pre-study on the subject matter of Bill C-7, many witnesses spoke about the problem with completely detaching MAID requests from suicidality generally. These witnesses included those representing Indigenous peoples facing suicide crises, mental health experts and suicide prevention advocates. Your own department has a background document on the Justice Canada website noting that allowing MAID

. . . in circumstances where a person is not approaching natural death could be seen as undermining suicide prevention initiatives and normalizing death as a solution to many forms of suffering.

Do you and the Department of Justice, minister, stand by that statement, and how do you reconcile that with this legislation? Also, if you’ve changed your mind on this, what specific evidence led to that major shift?

Mr. Lametti: Thank you for the question. Again, the issue is critically important. That justice document represents evidence and medical opinions that were given to us, and we would have to take those into consideration, as well as everything else that you have just stated, in moving forward.

That being said, you’ve heard around this table, even in the last hour and a half as well as with witnesses who appeared before you, that other expert opinions have been advanced.

We will all have to work together in order to study the question as it needs to be studied with the appropriate care and concern that needs to be given and with all the empathy that is so necessary when treating these kinds of questions.

I’ll commit to doing that, and I’ll commit to listening as we move forward, however that process is conceived, and I certainly am open to all of the various viewpoints that you’ve put forward, senator.

The Chair: Thank you very much, minister. Minister, I pushed to get more time from you. You were generous. You gave, and then I pushed for more and you still gave. So thank you, and please know that you’re always welcome to our legal committee and we really appreciate working with your staff who have been very accommodating to us as well. So thank you very much for being here this morning. I know your staff are going to stay over to answer our questions. So thank you, minister.

Mr. Lametti: Thank you very much to everybody.

The Chair: We’re very pleased to have the minister’s officials with us. We have Joanne Klineberg, Acting General Counsel, Criminal Law Policy Section, Department of Justice Canada; Caroline Quesnel, Counsel, Criminal Law Policy Section, and Carole Morency, Director General and Senior General Counsel, Criminal Law Policy Section.

We will start with our questions with Senator Petitclerc.

[Translation]

Senator Petitclerc: I don’t exactly know to whom I should put this question. So thanks to anyone who can answer it.

Actually, I’d like to go back to the amendment’s adoption in the House of Commons. We know that a new section has been added to the Criminal Code, as a result of which, when the Minister of Health develops regulatory provisions, he or she must consult the minister responsible for the status of persons with disabilities where appropriate.

I’d like to know how you think all that will actually happen. What do you think will be the potential impact of that amendment, bearing in mind the fears certain disability groups have expressed?

Joanne Klineberg, Acting General Counsel, Criminal Law Policy Section, Department of Justice Canada: Thank you very much for your question.

As you mentioned, the purpose of that amendment was to confirm that the Minister of Health must consult the minister responsible for the status of persons with disabilities. In principle, that consultation takes place in any case. When the ministers develop regulations, a consultation process is conducted within government and with the public, and changes are made. From what we understand, this is a clarification of a measure that should have been adopted at any event. This confirmation is positive and ensures that all the concerns of disability groups are addressed in the development of regulations.

Senator Petitclerc: Thank you very much.

Senator Carignan: My question is for all the witnesses and concerns the 90-day waiting period. Why impose a 90-day waiting period? The minister tells us it’s necessary in order to proceed with the assessment. When a person whose death is not reasonably foreseeable requests medical assistance in dying, that individual often does so because he or she is sick or suffering from a disability or has been in poor health for some time. Consequently, it is very likely that assessment could be conducted in a period much shorter than 90 days. Why then impose a 90-day waiting period, which can be reduced only where the person’s intellectual capacity to consent to medical assistance in dying is deemed compromised? I find it hard to understand why this 90-day waiting period is necessary.

Caroline Quesnel, Counsel, Criminal Law Policy Section, Department of Justice Canada: Thank you very much for the question, senator.

The 90-day waiting period was generally considered the minimum period to be established for the purpose of providing a basic safeguard that must be complied with in all cases. It is true that, in some cases, the disease or disability has been present for several years and that there is a long-standing therapeutic relationship between patient and physician. In those cases, the treatments, measures for relieving suffering and other steps may already have been explored. However, the 90-day waiting period does not begin until the medical practitioner or nursing practitioner begins to assess the patient’s eligibility for medical assistance in dying, an option that is truly particular and unique. Previous discussions may simply have focused on ways to relieve suffering or to improve the patient’s condition but may not have touched on the possibility of offering medical assistance in dying. Consequently, now we will focus on what can be done to relieve suffering and on the importance of discussing other measures with the patient to ensure they are considered. It is that process, we think, that can take some time.

Senator Carignan: My second question concerns the definition of “mental illness.” The act is not identical to the support documents. We see in the support document that officials — you, in this instance — specify that Alzheimer’s disease is not one of the mental illness exceptions. You also discuss diseases that are treated by psychiatrists.

Why not amend the bill to clarify the definition of the term “mental illness” and to include the text of the bill in the support document you’ve prepared?

Ms. Klineberg: Thank you for that good question, senator.

A starting point in answering it would be to say that the support document is drafted in more general terms than a piece of legislation, for example. Our purpose in the support document was to describe the intent behind the term “mental illness.” From a legislative standpoint, you have to be much more specific when describing a mental illness. However, we don’t necessarily have the expertise in that area. Our initial purpose, when the bill was introduced, was for the document you mention to describe that intent. However, it is true that there is no clarification in the Criminal Code at the present time. The term could always be clarified in the bill. In the context of medical assistance in dying, the support documents, such as the one the Department of Justice, our Health Canada colleagues and the provincial governments have prepared, play a very important role in the application of medical assistance in dying. Although the term is not clarified among the other terms in the code, the other documents may clarify that point.

[English]

Senator Batters: Thank you to the Department of Justice officials.

During our pre-study, we heard from witnesses that the 90-day assessment period in the second track lacked a precisely defined start time in the legislation. In your view, in the legislation, what is the start date for the 90 days?

Ms. Quesnel: Thank you for the question, senator. The start date for the 90 days, as set out in the legislation, is when a first assessment begins. So I think the department’s view is that the 90-day clock, so to speak, begins when one of the practitioners assessing eligibility turns their mind to the assessment and begins the assessment. It is not tied to, for example, the written request for medical assistance in dying. It’s really determined by when the practitioner begins their process under their understanding of assessing eligibility.

Senator Batters: Bill C-7 provides that the 90-day time frame can be shortened. Is there a minimum time frame as a reflection period provided for in the legislation, and if not, why not? Because this second track is for people who are not in a position of “reasonably foreseeable death.”

Ms. Quesnel: There is no timeline that Bill C-7 specifies in those instances where the 90 days would be shortened because there is a risk of loss of capacity. However, the bill specifically requires that the eligibility assessments from both practitioners must still have been completed.

Senator Batters: Thank you. I have a number of other questions, so I will move on.

The Charter statement document lists that the Benelux countries that do allow MAID for mental illness says that part of the reason that’s not happening here is because of concerns about “a wide range of mental illnesses” that are covered in those particular countries. The minister today said those countries have “an enormous array of mental illness” that qualifies for MAID.

So could you please provide us with just a few examples of some of the most concerning cases where MAID did occur in those countries for mental illness?

Ms. Klineberg: Thank you for the question. Let me see if I can refresh my own memory as to some of those cases. It’s been a while, I think, since we have reflected on them.

One of them that I can remember was a case of a young woman, I think, who was sexually abused by her psychiatrist, and as a result of the abuse by her psychiatrist she, in combination, I think, with the rest of the conditions she was suffering from, her mental illness, she sought and did ultimately obtain MAID. That would be one case.

Unfortunately, senator, I’m drawing a bit of a blank on some other cases. We can certainly endeavour to share some of those with you.

Senator Batters: That would be great.

Ms. Klineberg: Unless some of my colleagues can remember other examples.

Senator Batters: That’s okay. I just have one final thing to ask on this round.

The second track provides that one out of two medical practitioners needs “. . . expertise in the condition that is causing the person’s suffering.” Yet there is not a requirement that that person has to be a specialist. How is “expertise” defined and who ensures that that requirement is actually met?

Ms. Klineberg: Thank you again for the question.

There was a fair amount of questioning when the bill was tabled as to what the meaning of “expertise” was. I believe the legislative background makes clear that it is not intended that that require board certification, for instance. So the practitioner with the expertise does not have to be a certified expert in a particular condition, but they do have to have enough experience with and knowledge of the condition in order to be able to provide that special —

Senator Batters: Where it’s enough.

Ms. Klineberg: Right. So this, I think, is going to be within the professional judgment of the practitioners in question.

Senator Batters: So their own say-so?

Ms. Klineberg: Well, most aspects of the exemption regime in the Criminal Code are dependent on the reasonable and competent care and judgment of the practitioners involved, and there is actually a clause which was inserted into the Criminal Code during Bill C-14, which, in addition to all of the specific requirements in the Criminal Code, also requires medical assistance in dying to be provided with reasonable care and skill and in accordance with any applicable provincial health standards and so on.

So yes, it is built into the regime that reasonable competence in these matters that are within the judgment of the practitioners is expected to be exercised in these cases.

The Chair: I have a question. Further to what I was asking the minister on gender-based analysis, I’m not sure if the two of you are the right people. If not, if you could give me a written answer. How is data collected for gender-based analysis? Generally, for all the gender-based analysis plus, how do you go about collecting the data?

Ms. Quesnel: Thank you for the question, Madam Chair.

In general, at least in our experience, in preparing the GBA analysis we would rely on data that is available at the time that we are preparing it. So we would rely on data that is out there, public existing or available to the government, as opposed to gathering data specifically for the purpose of the GBA analysis.

The Chair: Thank you. As you know, GBA+ and the Justice site sets out all the different groups that you analyze: age, culture, language, culture, ethnicity, religion, disability, geography, income, sexual orientation, education. There’s a whole slew of things. As you can imagine from the question I asked the minister, my concern at this stage is on the race data collection.

I am really troubled that all the mention that was made on race was just as a demographic and nothing else. I’m wondering how this happen when GBA+ is supposed to be looking after all those things? And especially since last July, there is no mention of anything about race data collection. Can you explain that, please?

Ms. Quesnel: We prepare the gender-based analysis based on the data that’s available in relation to medical assistance in dying at the time. As I think the minister mentioned, it’s hard to obtain disaggregated data about medical assistance in dying right now. Certainly an area that should be improved for the richness of that data, especially going forward. But the GBA+ analysis was prepared using what was most relevant in relation to medical assistance in dying at that time, and not all of these factors necessarily arose out of the data, as we had it under the time pressures that we had to prepare the analysis. But certainly, there is always room for improvement.

The Chair: My concern is that I specifically had asked the minister if this GBA included race-based analysis. He told me that it did. I have no doubt that if he said it exists. I’m wondering, does it exist anywhere else and it just wasn’t mentioned in the report? Is there something else that we can get to show that it was analyzed? Because here there’s nothing there. It looks like there was no analysis taking place.

Ms. Quesnel: I see my colleague Carole’s hand up. Would it be okay —

The Chair: Absolutely.

Carole Morency, Director General and Senior General Counsel, Criminal Law Policy Section, Department of Justice Canada: Thank you, Madam Chair. Really just to reinforce the commitment that the minister made and the challenges that he noted. The department conducts GBA+ analysis in accordance with policies set forth by the Treasury Board. However, the challenge is, as my colleague has noted, finding the data that supports that more detailed analysis, as and when items are developed for the government.

In this case, the fact that the analysis does not provide more information was a reflection that we weren’t able to identify more precise information that would help to better articulate that analysis.

We definitely do work with colleagues within the department and across the federal government to try to collect that, including Statistics Canada and our GBA policy leads. From a policy perspective, our colleagues at Health Canada, for example, if they had different information that might have been available through their monitoring, whatever information might be available through FPT for a research more generally, we do our best to try to pull that together. But as the minister has said, it is a great challenge, and it is one that the minister has demonstrated commitment to try to address more concretely going forward.

The Chair: Ms. Morency, I hear everything you say. The concern I have is because of the assurance that the minister had given that there was race-based analysis. Obviously, I understand now that it was a little bit lacking. I’m hoping that in the next bills that come we will have appropriate race-based analysis because this was non-existent.

Senator Martin: I wish that we could be looking at this bill after a review. Unfortunately, that hasn’t happened. And Senator Boniface did ask this to the minister.

Simply, in the House of Commons, when the Justice Committee, the minister was asked about the five-year review, he stated it would be an opportunity to look at advance directives, mature minors and mental illness as a sole criterion. I’m asking the officials, as we prepare for the review that does need to happen sooner than later, will the review also consider enshrining additional safeguards to make sure vulnerable Canadians are protected rather than it being an opportunity to further expand the regime?

I say this because in the pre-study we heard from witnesses of the gaps that do exist and safeguards that are needed because post-2016 this was a new regime so naturally there are gaps and we need to strengthen rather than remove all safeguards. Therefore I want to get those assurances from the officials today.

Ms. Klineberg: Thank you. The most that we as officials could say about this is that the requirement from Bill C-14 is that the entire regime would be reviewed, as well as the state of palliative care in Canada.

The precise parameters and how the reviews actually unfold are going to be matters that will, as the minister alluded to earlier, have to be negotiated between the two chambers and with the parties in terms of any clarifications or precision to the terms of reference.

However, we could certainly confirm for you that in Bill C-14 the parliamentary review was envisaged as a review of that entire regime.

Senator Boniface: My question is directed to whoever is comfortable answering it.

The Department of Justice legislative backgrounder for Bill C-14 in 2016 stated that the criterion of reasonable foreseeability of death is intended to require temporal but flexible connection between the person’s overall medical circumstances and their anticipated death in a period of time that’s not too remote.

In his second reading speech in the House of Commons for Bill C-7, the minister stated:

As enacted by Parliament in 2016, reasonable foreseeability of natural death refers to a death that is expected in the relative near term . . . .

It means that in light of all the circumstances his or her death is expected in a relatively short period of time.

Does Bill C-7 change the time frame of a reasonably foreseeable natural death, and why or why not?

Ms. Klineberg: Thank you for the question. Our view would be that there is not intended to be any change in the definition or the meaning of a reasonably foreseeable natural death. There is a passage in the legislative background for Bill C-7. It’s on page 9 of that legislative background, which uses a lot of the same language as you, senator, have mentioned from the original legislative background that RFND requires a temporal but flexible connection and it:

. . . is not defined by a maximum or minimum prognosis, but it does require a temporal link to death in the sense that the person is approaching the end of their life in the near term.

Our view would be — I believe the minister has confirmed this on a few occasions — that while the role of that criterion is completely changed in the new bill, it’s no longer a barrier to access, but as the minister says a doorway to a different pathway of safeguards, its meaning is intended to be the same.

Senator Boniface: Thank you very much for the clarification.

Senator Harder: I understand that the government’s position on the exclusion of mental illness has not changed since the Supreme Court ruling in Ontario (Attorney General) v. G, which cautions against an undifferentiated treatment of all individuals with mental health illness.

Can you explain how the exclusion of mental illness proposed in this bill differs from the exclusion of mental health illness considered by the Supreme Court in that case, Ontario (Attorney General) v. G?

Ms. Klineberg: Thank you for the question. Unfortunately, senator, I am not able to do that. The witnesses you have before you today are experts in the domain of criminal law in this bill in particular. Therefore that is beyond the information I have crammed inside my head for today’s meeting.

However, we have materials prepared on that and we can certainly make those available.

Senator Harder: I’d be grateful if you did that.

I have a further question, going back to data collection. It is not uncommon in bills such as this to have a hook in the bill with respect to regulatory amendments or regulatory procedures that would allow data to be collected that is relevant for the consideration of the issue that the bill addresses.

Are you saying that you don’t have the capacity to collect the data that we assumed with Bill C-14 would be collected and therefore instructive in future consideration of this issue? If not, would the government consider an amendment that would cause such data to be collected through a regulatory framework?

Ms. Klineberg: Again, thank you for that question. I think that is a question better asked of our colleagues from the Department of Health, who we know will be testifying before you tomorrow. The monitoring regime, since the enactment of Bill C-14, is the responsibility of their minister. So they are the public officials who have spent the greatest amount of time with their noses in the regulations and the monitoring regime, and no doubt are turning their mind to how it might be changed once Bill C-7 is adopted. I think they will be able to give you a better answer than we can today, unfortunately.

[Translation]

Senator Boisvenu: I don’t know who can answer my questions, which will piggyback on Senator Carignan’s question, particularly concerning degenerative diseases, Alzheimer’s and dementia. People who suffer from dementia in Quebec are now eligible for medical assistance in dying. In an article that appeared in La Presse this morning, Véronique Lauzon writes that, every hour, she receives dozens of comments from her readers saying it makes no sense that people suffering from irreversible degenerative diseases aren’t entitled to medical assistance in dying via power of attorney. I’m trying to understand why, in dementia cases, for example, those people would simply be eligible for medical assistance in dying whereas those suffering from Alzheimer’s would not. These are two irreversible mental illnesses, but one is also a disease that physically attacks the body. Why, as Senator Carignan said, wouldn’t this bill be amended to provide exceptions for those two diseases so they can be recognized as degenerative diseases from a psychological and psychiatric standpoint, but also from a physical standpoint?

Ms. Klineberg: Thank you for your question. I think we have to be clear about the eligibility situation under the current act, and under Bill C-7, and on the issue of being able to obtain medical assistance in dying based on a request that was made a very long time ago. Under the present act and the amendments provided for in the bill, there are no exclusions for neurodegenerative conditions. The background document is an attempt to clarify the fact that “mental illness” does not include neurodegenerative diseases. Consequently, the intent is not that they should be excluded under the mental illness exclusion. They are not excluded by other provisions in the act or in the bill. As a result, individuals suffering from Alzheimer’s, for example, are eligible if they meet all eligibility criteria and if all safeguards are complied with. If my understanding is correct, the term “by proxy” means that someone else gives consent for the person seeking medical assistance in dying, and that’s something beyond the scope of the present act and Bill C-7.

The provision of medical assistance in dying to someone who is incapable of giving consent, but who drafted a document a very long time ago based on a diagnosis, not on intolerable suffering because it was not present at that time, falls completely outside the amendment for cases such as that of Audrey Parker, for example. It will require much more discussion as to what the safeguards should be because safeguards must be in place during the period of time when the person drafts the request, in addition to the other safeguards that must be in place when the medical assistance in dying in question is provided to that person. So this is a much more complicated situation than the one addressed by the bill and, as the minister mentioned several times —

Senator Boisvenu: I understand. The minister told us this morning that accessing MAID via power of attorney, or proxy, was a no.

However, under Bill C-7, would people suffering from dementia in Quebec, who are currently eligible under Quebec legislation on medical assistance in dying, no longer be eligible for medical assistance in dying?

Ms. Klineberg: Based on the intent behind the mental illness exclusion, they are not excluded. If the dementia is related to a neurodegenerative condition, there is no provision for that under the mental illness exclusion.

Senator Boisvenu: So it’s a step backward for Quebec?

Ms. Klineberg: No, those persons will still be eligible.

Senator Boisvenu: It’s a very thin line when it comes to diagnosing whether it’s dementia or Alzheimer’s disease. The two are often confused. So why not put both in the same inclusion rather than exclude Alzheimer’s and include dementia? I’m trying to understand the logic.

Ms. Klineberg: I may not be qualified to answer you because I lack medical understanding, but, from what I understand, the only mental illnesses that will be excluded are those that are treated by psychiatrists. Dementia is associated with a neurodegenerative condition, a physical condition affecting the brain, and is therefore not excluded. They may give consent if they have made a voluntary request. They are not excluded under Bill C-7.

Senator Boisvenu: That’s really not clear. Thank you.

Senator Dupuis: My question is for the Department of Justice representatives. I’ll let them decide who will answer.

Under the safeguards, for persons whose death is not foreseeable, as opposed to safeguards that are relaxed for persons whose death is foreseeable, more particularly under new subsection 3.1 of Bill C-7, what in all the paragraphs from (e) to (h) applies? We’re trying to understand. Since you had to work with the Truchon decision, what applies for someone from Quebec today whose death is not foreseeable, considering what that person obtained under Truchon compared to what is provided for in Bill C-7, and how is that different from what those people whose death is foreseeable would get under Bill C-7? First of all, the Truchon decision relative to Bill C-7 for someone whose death is not foreseeable.

Ms. Klineberg: Pardon me, but I didn’t understand the question. I heard everything you said, but not the question.

Senator Dupuis: I’m a person in Quebec, and my death is not foreseeable. I meet all the Criminal Code criteria to be able to request medical assistance in dying, except that my death is not foreseeable. In principle, the Truchon decision has consequences for my situation in Quebec. What is the difference between that consequence and the consequence resulting from the safeguards provided for under Bill C-7 for someone whose death is not foreseeable?

Ms. Klineberg: If I correctly understand the question, in Truchon, the eligibility criterion of reasonably foreseeable natural death was ruled unconstitutional, but a description of what the safeguards might be was not in issue before the court, even though the judge noted that she did not see any need to establish new safeguards. The onus is on Parliament to establish new safeguards.

Senator Dupuis: Pardon me for interrupting. If I understand your answer, the decision in Truchon was clear: even if your death wasn’t foreseeable, you had the option of requesting medical assistance in dying. The end-of-life or foreseeable death requirement was removed. Now, under Bill C-7, the same person whose death is not foreseeable, but who meets all the criteria, is suffering irremediably, and his decline is irreversible. What is the difference between what you call safeguards — which are ultimately barriers to medical assistance in dying — in this case and those that would apply if his death were foreseeable?

Ms. Klineberg: Ah, now I understand. Thank you.

The difference is that, in the case of persons whose death is reasonably foreseeable, suffering is mainly related to the fact that the person is dying. Safeguards are established to address the risks because there are risks inherent in medical assistance in dying in all cases, and they will be reduced under this bill. The risks are different in the case of individuals who will survive for a period of time, perhaps for years, 10 or 20 years. There is a risk of misdiagnosis or failure to find an alternative that might relieve that person’s suffering. The risks associated with medical assistance in dying in the case of a person who is not near death are different and greater, and, because of that, the safeguards proposed in Bill C-7 are there so that practitioners can take their time and use their expertise to ensure that all aspects of the request have been examined and that all other options have been identified so they can be offered to the patient. So it’s really to confirm the person’s decision to choose medical assistance in dying.

Senator Dupuis: Thank you. Earlier you mentioned the poor quality of data used to conduct the gender-based comparative analysis plus. I found the answer a bit disturbing in that Justice is ultimately responsible for analyzing consistency with the Charter.

If I correctly understand the answer we received, you feel that the data are not good and that you can’t do any better than what you’re doing now. When will Justice Canada clearly inform whoever does statistics in Canada, whether it be Statistics Canada, the Department of Health or whatever, that you need those data in order to conduct a genuine study, a genuine analysis, and to determine to what extent communities or social groups are more affected by statutory measures. Justice Canada is responsible for determining the data you need.

You understand that the Charter was drafted in 1982. That was a few decades ago. However, if Justice Canada never states the exact data it needs to conduct these analyses, we will always get the same answer: we don’t have the data we need; we have to request them from Health Canada.

I don’t consider that a very convincing answer.

[English]

Senator Griffin: Thank you. I also have no questions. The territory has been plowed.

Senator Batters: I have a few more questions on this. Regarding the role of witnesses, when Minister Hajdu testified at our pre-study — she was talking about the role of witnesses — and she said the only role of a witness for a MAID request is to confirm the identity of the person signing and dating the request for MAID. And then she said that witnesses play no role in determining whether someone is eligible for MAID or whether their decision is voluntary and informed.

Given what she described there, is that correct? Does the Justice Department view that as the only role of a witness for a MAID request? If so, then why did the government draft Bill C-14 and Bill C-7 with only this minimal role prescribed for a witness?

Ms. Klineberg: Thank you for the question, senator. Our view would be that the role of the witness to the written request is both to confirm that the person signing the request is the person the request is about and to confirm that that person understands what it is they are signing and is signing it voluntarily.

Senator Batters: I think you had better let your Minister of Health know that’s part of it, because that’s what I thought it probably was.

Another question: Is it correct to say that the new requirement in the second track, which is that there isn’t a reasonably foreseeable death, is that:

. . . the person and practitioners would have to agree that reasonable and available means of alleviating the person’s suffering had been discussed and seriously considered before MAID could be provided?

Is it correct that is only for the second track, no reasonably foreseeable death, and it’s not required in the first track?

Ms. Klineberg: Thank you for the question. That’s a bit of a subtle question. What I will say is that in both tracks there is a requirement on the part of the two practitioners to ensure that the person gives informed consent to MAID. That’s in both tracks.

Informed consent is a concept that’s central to the practice of medicine. As a general matter, it involves the requirement that the person obviously has decision-making capacity and that they are informed of all of the options that might be reasonable given their situation, in addition to the option that they’re planning to choose.

There is already something about ensuring that the person is made aware of alternatives and has the capacity to understand them that is part of informed consent in both tracks, but in the second track of safeguards —

Senator Batters: That goes further, right?

Ms. Klineberg: We have characterized it as a clarification of the requirement of informed consent. What Bill C-7 does is it explicitly addresses certain matters in more detail for Criminal Code purposes for this track because of the heightened importance that they take in that particular context.

Senator Batters: This is my last question. In Bill C-14, there was part of the amendment that was passed by the Senate — I believe it was Senator Plett’s amendment that was not accepted by the government — forbidding a person who is actually administering the assisted suicide from being a beneficiary of that person’s estate. That part was not accepted by the government as an amendment, so it’s not part of Bill C-14. I’m wondering if you can tell me how many assisted suicide cases in the last four years in Canada have occurred with that scenario occurring? Does the government keep track of those types of statistics about who is administering the assisted suicide — those types of things — so they would know if that amendment, that was not accepted by the government, would actually be helpful in providing proper protection for vulnerable people?

Ms. Klineberg: Thank you for the question. I wouldn’t say I’m confident. I don’t know if that information is collected through the current monitoring regulations and that is certainly a question that our colleagues from Health Canada would be able to answer for you tomorrow. In terms of how many cases there have been where that has happened, unfortunately, I don’t have that information for you today.

Senator Batters: You would agree, though, that it would be helpful to know if that was becoming a potential concern because there were some people who were benefiting from estates and administering assisted suicide on behalf of vulnerable persons?

Ms. Klineberg: I would imagine a situation like that to be quite rare, but I would just be making an assumption.

Senator Batters: I would hope so, but we need that data. Thank you.

[Translation]

Senator Miville-Dechêne: I have a clarification question for the speakers who answered Senator Dupuis’ question.

In discussing suffering, you drew a distinction between individuals approaching the end of their lives whose death is foreseeable and those whose death is not foreseeable. You said, and I quote, “As far as suffering goes, the person who is dying, that’s suffering.”

So if my understanding is correct, I want to be sure I clearly understand because I obviously want to point out that we are all opposed to intolerable suffering and that it must be reduced and eliminated, but, in this case, you’re saying that the mere fact of being near death constitutes suffering, suffering that need not be persistent and intolerable but that is suffering in itself and that meets the Criminal Code criterion for granting medical assistance in dying.

Ms. Klineberg: Thank you. If that’s what I said, then I misspoke. I didn’t intend to say that the mere fact of approaching death causes suffering. What I meant instead is that, in cases where natural death is reasonably foreseeable, the suffering of individuals seeking medical assistance in dying is probably related more to the conditions of their dying process. So it’s the manner in which their condition causes their death that causes their suffering, pain and the feeling that one no longer has the dignity of things.

They are therefore seeking medical assistance in dying so they can have a peaceful death process instead of a painful one.

That’s what I intended to say. In this context, medical assistance in dying is provided as a way to offer a peaceful death. However, in cases where death is not foreseeable in the short term, the factors causing suffering are probably more related to a person’s living conditions. Suffering associated with one’s medical condition combines with suffering that could be caused by unemployment or marital problems, for example. These are all living conditions that may contribute to the person’s overall pain. That is why the bill requires that practitioners take more time with these cases to explore thoroughly what forms the basis of the person’s suffering. For example, if psychosocial issues are the cause, you try to remedy them in other ways.

Senator Miville-Dechêne: Thank you for that clarification.

Senator Petitclerc: I would like some clarification following the question from Senator Dupuis, who correctly noted that Judge Baudouin did not prescribe specific safeguards in her judgment. I’d like to hear you address that subject because it’s clearly this government’s choice to go ahead with safeguards to add a degree of protection following the consultations. Can you explain the process that led to those safeguards and the reasoning behind it?

Ms. Klineberg: First of all, there was a reading of the judge’s decision in Truchon. Public consultations were conducted, together with round tables with experts and readings of numerous documents, including the reports of the Council of Canadian Academies. Throughout the process, the minister stated that it was worthwhile to establish specific safeguards in a different context. The government therefore decided that the proximity of death should no longer be a barrier to medical assistance in dying. The two scenarios represent different decisions. As I just explained, authorizing medical assistance in dying to allow a person to die peacefully when death is inevitable is something different from enabling someone who is not near death to determine whether his or her suffering is intolerable based on differences in the situations and in the responses of practitioners. In a broader context, some physicians have more concerns about medical assistance in dying. Other groups representing persons with disabilities and other groups in society have different concerns. That is why the minister decided to choose the two paths with different safeguards. It’s not the fact that they are stricter — they aren’t barriers — but those safeguards bring more clarification to the process that should be followed by the practitioners who consider the request of a person who is not dying in order to ensure they attempt to determine whether something else can be offered before the person chooses to die. All these measures are intended to offer options and alternatives to medical assistance in dying. All this requires time and expertise to assess the medical condition and suffering of others. Specific explanations will have to be provided during the discussions that take place.

Senator Petitclerc: Thank you very much.

[English]

The Chair: I want to remind senators to let the clerk know if you do not have a question if you’re a committee member. If you are not a committee member, then let the clerk know.

[Translation]

Senators, we are doing things a bit differently with the panels. The panels will be two hours long. The witnesses will have seven minutes, and the senators will have five minutes to ask questions.

[English]

Senators, you will have five minutes for your questions.

We are joined today by our former colleague, Senator Joyal, who needs no introductions.

[Translation]

Welcome to the Honourable Serge Joyal. We are very happy to have you with us today.

[English]

Also, we are joined by Marie-Claude Landry, Chief Commissioner of the Canadian Human Rights Commission. She’s joined by Marcella Daye, Senior Policy Advisor and Sheila Osborne-Brown, Acting General Counsel and Director of Legal Services.

[Translation]

We also have Patrick Taillon, Associate Professor in the Faculty of Law at Laval University. He is a constitutional law expert who has worked on medical assistance in dying for years. He is also a regular member of the Centre de recherche interdisciplinaire sur la diversité et la démocratie (CRIDAQ).

[English]

We also have A. Wayne MacKay; he’s a Professor Emeritus of Law, Schulich School of Law, Dalhousie University. Professor MacKay is a nationally recognized teacher and scholar, and an accomplished author in the areas of constitutional law, the Charter of Rights, human rights, privacy law and educational law.

We have Colleen Sheppard, Professor of Law at the Faculty of Law, McGill University. She recently completed a term as director of McGill Centre for Human Rights and Legal Pluralism. We have Elizabeth Sheehy, Professor Emerita of Law, Faculty of Law, University of Ottawa, and researcher of issues of inequality and criminal law, and domestic violence.

Senators, later we will have Mr. Gerard Quinn, United Nations Special Rapporteur on the rights of persons with disabilities. Mr. Quinn was appointed the UN Special Rapporteur on the rights of persons with disabilities by the Human Rights Council at its 45th session in October 2020.

Senators, we are ready to proceed, and we will proceed with Senator Joyal. Senator Joyal and all the panellists, I remind you, you have seven minutes.

Senator Joyal, the floor is yours.

[Translation]

Hon. Serge Joyal, P.C., former senator, as an individual: I would like to thank the honourable senators, of course, for allowing me to speak to you today, for a very simple reason. I read Bill C-7 since, as you know, I had a particular interest in Bill C-14, the predecessor of this bill, which was obviously a response to the Supreme Court of Canada’s 2015 judgment in Carter, the decision that established the right of access to medical assistance in dying subject to four specific conditions.

As you may remember, Bill C-14 imposed or added the reasonably foreseeable death condition, and I had argued before the Senate, as did other senators who are still members of this committee, that this criterion had not been included in the Supreme Court’s Carter decision and that it was therefore discriminatory and contrary to sections 7 and 15 of the Charter.

You will also remember that the Senate amended the original bill by a majority, and the House of Commons subsequently rejected that amendment. In an attempt to resolve the impasse, I also proposed that the government refer the matter regarding that particular criterion to the Supreme Court so that persons concerned by the criterion would not have to challenge Bill C-14.

The Truchon judgment, with which everyone around the table is familiar, was rendered, ruling in effect that the “reasonably foreseeable death” criterion violated the Charter. Now we find ourselves with another bill, Bill C-7, which gives effect to the Truchon decision and adds certain elements to the procedure for access to MAID, but this bill contains a provision that, in my view, stigmatizes and discriminates against persons suffering from mental illness, subsection (2.1), with which you are obviously very familiar, and I quote:

For the purposes of paragraph (2)(a), a mental illness is not considered to be an illness, disease or disability.

This provision will clearly be challenged immediately after the bill is passed, as Bill C-14 was by Julia Lamb, from British Columbia and Mr. Truchon and Ms. Gladu. And the reason why this provision is unconstitutional, in my view, is that it removes a right that persons suffering from mental illness had under Bill C-14, the right to access to medical assistance in dying, in the same way as all other sick persons. In its judgment in Carter, the Supreme Court never expressly excluded persons suffering from mental illness any more than it excluded any other class of sick persons.

The Supreme Court established four criteria for determining a grievous and irremediable condition. Those are the two qualifiers of illness. The reason why the Carter decision must be given its full application is that a decision was rendered by the Alberta Court of Appeal in 2016, four years ago. It is a very important decision because the Attorney General of Canada and the Attorney General of British Columbia appealed to the Alberta Court of Appeal to deny MAID to an individual suffering from mental illness, a person identified by the letters E. and F. In response to the Attorney General of Canada’s request to deny access to MAID to a person known by the initials E. and F. and suffering from mental illness, the Alberta Court of Appeal held as follows:

[English]

Persons with a psychiatric illness are not explicitly or inferentially excluded from MAID if they fit the criteria.

[Translation]

This was a decision by the Alberta Court of Appeal, one of the highest provincial courts, rejecting the Attorney General of Canada’s arguments in 2016 that persons suffering from mental illness should not have access to medical assistance in dying, and the Attorney General of Canada did not appeal that decision to the Supreme Court. Right here in November, you heard various expert witnesses clearly explain to you that persons suffering from mental illness still had the right of autonomy of the individual, the right of autonomy to decide on one’s health and how it will be protected. That right is recognized by the representatives of the psychiatric associations, both the Association des médecins psychiatres du Québec, in its November 2020 report, and the Canadian Psychiatric Association, which clearly recognize that persons suffering from mental illness have the capacity to decide for themselves, if they can have access, whether they wish to have access to medical assistance in dying.

Bill C-7 therefore removes a right that was exercised under Bill C-14, the act we had previously adopted, and for no particular reason. The only general argument given in the bill is that there are risks and the issue is complex.

However, the case law is extremely clear: If you want to deny a person the right of access to MAID or any other Charter right, you must show that the limit is demonstrably justified in a free and democratic society. But nothing in the bill shows that the government has conducted that exercise or can demonstrate, or would be able to demonstrate before a court, that it can justifiably withdraw the right to access to medical assistance in dying from persons suffering from mental illness.

The other element I would like to bring to your attention, honourable senators, is the Supreme Court’s judgment last November in Ontario (Attorney General) v. G. This Supreme Court decision is very important because it defines the rights of persons suffering from mental illness, having regard to section 15 of the Charter. What does the Supreme Court say in the decision I just cited? It is of capital importance. The Supreme Court says two things. First, under section 15, persons suffering from mental illness have a right to genuine equality, not general equality, as it were, but genuine equality.

Second, no bill introduced by any government whatsoever may perpetuate the stigmatization of persons suffering from mental illness. But what does Bill C-7 do? First, it denies a right of access without demonstrating that it is necessary to exclude those persons in order to protect them, since science acknowledges that it reserves the right to decide and retains that capacity to decide for itself, and, second, it perpetuates the stigma of persons suffering from mental illness.

The Supreme Court has very clearly held that the condition of persons suffering from mental illness must be assessed on a case‑by-case basis, having regard to their specific circumstances, to ensure minimal infringement of their rights.

This is the fundamental criterion for limiting the right of access to medical assistance in dying of a person suffering from mental illness. Madam Chair, I will have a chance to clarify certain aspects during the question period. Thank you for allowing me this time.

[English]

The Chair: Our next panellist is Marie-Claude Landry, Chief Commissioner of the Canadian Human Rights Commission.

[Translation]

Marie-Claude Landry, Chief Commissioner, Canadian Human Rights Commission: Good afternoon, honourable senators, ladies and gentlemen.

Thank you for inviting the Canadian Human Rights Commission to participate in this discussion today on Bill C-7.

I am joined by my colleagues, Sheila Osborne-Brown, Acting General Counsel and Director of Legal Services, and Marcella Daye, Senior Policy Advisor. And before I continue, I would like to acknowledge that I am joining you from the traditional and unceded territory of the Abenaki people and the Wabenaki Confederacy. Since we are all joining this discussion from various locations, I would like to honour all the traditional territories being represented here. As Canada’s national human rights institutions and as a body designated with responsibility for monitoring the Government of Canada’s implementation of the UN Convention on the Rights of Persons with Disabilities, or CRPD, we are here today to lend our human rights expertise to your consideration of this bill.

Specifically, we have three main points to share, all with the ultimate goal of improving the bill and promoting substantive equality in Canada.

So, to my first point, our concern is that — especially in the absence of an end-of-life requirement — people with disabilities — who too often do not have access to adequate medical and community supports — might choose medical assistance in dying more often, simply because it is easier to access. That is not a meaningful choice. And it may not be a truly voluntary one.

And it may happen more often than we can know in Canada. This may serve to further entrench the stigma, ableism and systemic inequality that already affect people with disabilities. Canada must therefore ensure that the choice to request and receive medical assistance in dying is meaningful and truly voluntary. Accessing medical assistance in dying should not result from the existence of systemic inequality, which affects far too many people with disabilities in Canada, nor should it be a default for a state’s failure to fulfil its human rights obligations under the UN CRPD, the Charter or human rights codes.

These concerns have been voiced by UN experts, by rights holders themselves and by organizations that advocate on their behalf. These warnings should be heard and addressed in Bill C-7.

Which leads me to my next point: This bill needs to ensure that a comprehensive system will be in place to better reveal who is asking for and receiving medical assistance in dying, and why. This monitoring and reporting system must be built using a human-rights-based approach. This means that it must be shaped by the meaningful input of diverse people with disabilities. It must gather both quantitative data and qualitative input, and explicitly value lived experiences. It must reveal the complex socioeconomic and cultural factors — the social determinants of health, for example — that bring individuals to request medical assistance in dying and that bring practitioners to provide it. It must gather disaggregated data in order to reveal unique impacts on particular populations who experience intersecting inequalities.

The system must also use this data to assess how the implementation of medical assistance in dying is affecting rights under the UN CRPD, the Charter and human rights codes in Canada and how it is measured against social determinants of health.

Third, we urge this committee to take the time to put people with disabilities, especially those who experience multiple and intersecting discrimination, at the centre of your consideration of this bill. This should include women, Indigenous peoples, prisoners, LGBTQ2SI and racialized people with disabilities, and importantly, those with disabilities living in poverty. Ensuring meaningful participation is fundamental to Canada’s obligations to promote, protect and fulfill human rights, including those in the Convention on the Rights of Persons with Disabilities. Thank you.

Before answering your questions, I’ d like to draw your attention to our 2019 joint report with the Office of the Correctional Investigator, entitled Aging and Dying in Prison: An Investigation into the Experiences of Older Individuals in Federal Custody. It contains recommendations on allowing older offenders the possibility of dying in dignity. We recommend that you take these into consideration in your study. Thank you very much.

The Chair: Thank you, Ms. Landry. We’ll now move on to our next witness, Mr. Patrick Taillon.

Patrick Taillon, Associate Professor, Faculty of Law, Laval University, as an individual: Thank you for this invitation to speak on such an important and sensitive issue. My point of view will be that of a constitutionalist, hence of someone who is interested above all in matters of rights and freedoms, shared jurisdictions, and in particular, relations between the legislator and our courts.

I have a few observations and one recommendation. The first, with respect to medical assistance in dying, is that no magic recipe has yet been found to completely avoid the risk of a challenge. The difficult problem of reconciling freedom of choice — the idea of individual autonomy, according to which people who are able to consent can make their own decisions — with the need to protect the lives of those who are particularly vulnerable reflects the fact that between these two concerns, there is no foolproof balance or ready-made solution.

Not only does this risk giving rise to challenges, but to challenges on several, sometimes contradictory, fronts. When the Supreme Court of Canada overturned the Rodriguez decision it opened the door to allowing access to medical assistance in dying, which meant that inevitably, those who did not have such access would demand the same right. This access would also become broader, because safeguards would not only become increasingly necessary, but also more difficult to devise.

Second observation: Insofar as medical assistance in dying is decriminalized, it would mean a decline in the role of the federal Parliament. Health, private law, and professional ethics are matters of provincial jurisdiction. This issue is no different from others that Canada has lived through in its history: There was the long saga of prohibition, the abortion issue, and the decriminalization of cannabis. We could add many other examples in which it becomes clear that as morally sensitive questions have been decriminalized, the legislative space occupied by the provinces — as well as regulatory law in matters such as professional bodies in the instance under discussion here — will tend to grow.

So there’s clearly the temptation, because it’s a matter of rights and freedoms, to seek a consistent solution. But a careful reading of Canadian case law shows that the balance in rights varies with such considerations as context, time, scientific knowledge, professional health practices, and ethics. It’s also a balance that can vary from province to province.

Another observation: Only lengthy dialogue, or trial and error if I may use the term, leading to a solution and corrective action, between legislators and our courts, may over the longer term make it possible to achieve this sought-after balance of rights. Unfortunately, Truchon sometimes fosters this dialogue but in other respects makes it more difficult. In this dialogue engaged in by our institutions, our legislators and our courts, each institution has a role to play; codes of ethics, court decisions, and of course provincial and federal statutes and regulations. The better each institution plays its role, the greater the likelihood of establishing this balance.

In this context, it’s important to be aware of the fact that judicial power is not like other powers because, as the Rodriguez decision shows, when judicial power rules too quickly — and I don’t know where the mistake came from, but between the Rodriguez and the Carter decisions, one of the two must be wrong — because the judicial power specifies a standard, necessarily, and if this standard is not correct, if it contains an error, if it is not appropriate for Canadian society, then when this standard is stipulated by our courts it’s of course more difficult to remedy. Because the judge is interpreting a constitution, the standards that will arise from that judge’s interpretation will be supra-legislative standards. In other words, when standards are issued directly by the courts, if that’s the correct term, then so much the better; it’s protected by the Constitution. If an adjustment is needed, it becomes more complicated, because a constitutional review of such a sensitive issue, or the use of section 33, is clearly very unlikely. Hence judicial power must by its very nature be a counter-power, a check, a last resort, and not a point of departure or the creator of a rule of law.

A further observation is that the aim of the federal Parliament’s exercise of its legislative authority is to create a criminal liability exemption, and not to establish a detailed system for determining how medical assistance in dying is to be practised in Canada. It involves answering the question of what criteria or what threshold needs to be in place to convict a doctor of a criminal offence or to a prison sentence. It’s important to remember that this authority is one of criminal law. Because clearly, when a standard needs justification, or a safeguard in court, if the standard is regulatory and set by a professional body with attendant modest and moderate sanctions, it will not be subject to the same analysis by the courts as a standard of criminal law, accompanied by strong punitive or repressive measures.

Federal intervention ought not to stifle what I call dialogue among our institutions by imposing a single overly detailed standard whose effect would be to limit the ability of provinces to achieve a balance between rights, free choice and protective measures. The federal Parliament must also in my view avoid an overly detailed solution that would lead the courts to rule too quickly on matters that deserve a little time, experimentation, and trial and error —

[English]

The Chair: Mr. Taillon, can you wind up, please?

[Translation]

Mr. Taillon: I’ll wrap up now.

In this context, I’ll be coming up with a recommendation in a minute. Federal law would do well to include what we call in the jargon an item of conditional legislation, to the effect that medical assistance in dying be permitted in Canada, that it ought not to be subject to criminal action when it meets the basic conditions stipulated in the Carter decision and when it complies with provincial laws. It would then allow the provinces to establish their own safeguards in order to allow certain provinces to preclude some of the limitations imposed by the Truchon decision and for others to go further with respect to —

The Chair: Thank you.

[English]

A. Wayne MacKay, Professor Emeritus of Law, Schulich School of Law, Dalhousie University, as an individual: Honourable senators, thank you very much for this opportunity to appear before you today on this important issue.

However much we may soften the topic with terms such as “euthanasia” or “MAID,” the difficult decision before us is death. It is also death, which is assisted by the state intervention, raising Orwellian concerns in some quarters. On one side, the expansion of MAID is celebrated as a victory for individual autonomy and the means to a dignified death. On the other side, the critics of this expansion describe it as a dangerous and misguided public policy, with tragic consequences for the most vulnerable members of our society.

I have submitted a more detailed brief that will be made available to you in this short time, but with what is available here, I will address two issues: the expansion of MAID beyond reasonably foreseeable death and the constitutionality of excluding mental illness.

The difficult policy choice before you in Bill C-7 is whether to expand MAID beyond when natural death is reasonably foreseeable. Because we have a constitutional democracy in which legislators must act within the parameters of the Constitution, there is a preliminary question: What limits does the Charter of Rights put on this difficult choice?

To further complicate matters, those who support Bill C-7 say you are constitutionally mandated to expand MAID, while those who oppose it say to do so is unconstitutional.

Supporters argue that Truchon and its interpretation of Carter constitutionally require the expansion of MAID beyond the end-of-life situation. In the 2015 Carter decision, the Supreme Court of Canada set out the broad criteria for who is entitled to MAID as a valid exercise of autonomy. In the final sentence of paragraph 127 in Carter, the court does seem to suggest that their ruling is a response to the parties before them rather than a broader declaration, and Ms. Taylor in Carter was herself within a reasonably foreseeable death.

In Bill C-14, Parliament added to the eligibility requirement for MAID that their natural death has become reasonably foreseeable. The Carter decision was silent on this point.

The additional requirement was successfully challenged as being a violation of both sections 7 and 15 of the Charter in the 2019 Truchon case decided by the Quebec Superior Court. Rather than appeal this decision, the federal government responded with Bill C-7, removing this reasonably foreseeable death requirement. If Truchon is correct in its analysis, the removal is constitutionally mandated.

While Truchon is the only case to directly address this question, the unanimous Alberta Court of Appeal in Canada v. E.F. did grant MAID to a person where death was not reasonably foreseeable. This happened prior to the passage of Bill C-14 and its requirement of foreseeable death. The Alberta court interpreted Carter as not implicitly requiring foreseeable death.

Opponents of the expansion of MAID beyond reasonably foreseeable death argue that it’s a violation of section 15 of the Charter and therefore prohibited. The focus of this argument is the disparately negative impact on vulnerable groups, such as the disabled. The core argument is that many challenges of everyday life deny many vulnerable people the luxury of making truly autonomous choices.

I have sympathy for this position, but I am not sure it raises a constitutional prohibition. I do think this concern needs more thought and judicial input. I also feel strongly that government at all levels need to provide support to make living a life without pain and suffering a more realistic alternative.

I have two recommendations to make to this committee on the foreseeable death point. Number one, the federal government should immediately initiate a reference to the Supreme Court of Canada on the constitutionality of expanding access to MAID beyond the situation where death is reasonably foreseeable. While Truchon is impressive, I would like a broader judicial foundation for such a significant policy decision. The focus of this reference should be on the possible disparate effects of expanding MAID on vulnerable groups in respect to sections 7 and 15.

My second recommendation is that the federal government should formally commit to providing financial and other supports to home care, palliative care and general supports for people living with pain and suffering, with a particular emphasis on vulnerable groups.

Moving to my second main point, the exclusion of mental illness, given that I expressed concerns in an earlier section of this submission on the potential negative impacts of Bill C-7’s expansion of MAID on vulnerable groups, you might expect that I would support this exclusion. However, I am opposed to this exclusion in Bill C-7 and believe that it is a violation of both sections 7 and 15 of the Charter. Not only is it an attempted absolute exclusion from MAID, it also takes away a constitutional right recognized in Carter, as pointed out earlier by former Senator Joyal.

The point is further emphasized by the Alberta Court of Appeal in Canada v. E.F., where a person with mental illness was granted access to MAID.

There are also problems of vagueness as mental illness is not defined nor is psychological suffering. In addition to raising constitutional problems and vagueness, it causes real problems for front-line medical clinicians because they have to decide the line between psychological suffering and mental illness in order to determine whether or not they have committed murder.

Finally, in recommendations on that, I state that because it is a constitutional violation, the committee should recommend, one, that this section be deleted from Bill C-7; or, two, that it be included with a one-year sunset clause; or, three, that the issue of the constitutionality of this exclusion be added to the reference to the Supreme Court.

Thank you very much for your time.

The Chair: Thank you, professor. We will go on to Mr. Gerard Quinn, the UN Special Rapporteur on disability.

Gerard Quinn, United Nations Special Rapporteur on the rights of persons with disabilities, United Nations Human Rights Council: Thank you indeed for the high honour of addressing your committee today. In the time available, I would like to do just three things.

First of all, in order to give you some context, I will take a moment to explain the role of the UN Special Rapporteur on the rights of people with disabilities.

Second, I would like to focus on two or three core provisions in the UN Convention on the Rights of Persons with Disabilities that appear particularly relevant to today’s debate.

Third, allow me to comment on the application of these core provisions to Bill C-7, as I see it.

First of all, the backdrop to the relatively new office of UN Special Rapporteur was the conclusion of the UN disability treaty in 2006. Canada played a major role in the drafting of that treaty and deserves immense respect and credit.

The treaty, like all treaties, exists in the international sphere and engages Canadian state responsibility at that level. Conscious of the need to bring these treaties closer to home, a treaty monitoring body was organized, and, alongside the treaty monitoring body, the UN Human Rights Council added a role of Special Rapporteur from 2014. One important role of the office of the Special Rapporteur is to alert the international community to worldwide trends and to interact constructively with governments.

Chair, it is certainly not my role to dictate outcomes. To govern is to choose and you must do that. It’s my role to underpin the democratic process with framings that come from international legal obligations which states have freely entered into.

In the broad debate before you today, I’m not coming completely new. The previous UN Special Rapporteur, Catalina Devandas, had already commented on the 2016 amendments to your Criminal Code in her 2019 country visit and also in her 2019 report on ableism in science and medicine. Indeed, the UN Committee on the Rights of People with Disabilities has already spoken on assisted dying under your 2016 legislation. I build on their analysis.

Second, what is it about the UN treaty that seems relevant to this bill? The reason a treaty was deemed necessary had to do with the relative invisibility of persons with disabilities, an invisibility that allowed ableist assumptions and prejudice to dominate public discourse. A key aim, therefore, was to make persons with disabilities visible and to reverse ableism.

Mostly these assumptions were implicit — even unintended — and hardly ever noticed, but their effects were always exclusionary. That’s why Article 8 was inserted to “combat stereotypes and prejudices,” to “promote positive perceptions” and to “nurture receptiveness” to the rights of persons with disabilities.

Article 5 on equality lies at the heart of the treaty and informs all other rights which are to be secured equally, including the right to life.

Recently, the UN committee highlighted that its understanding of equality, which is called “inclusive equality,” rests on a recognition of the personhood of persons with disabilities and their equal inherent worth as human beings. It is this concept of personhood and human agency that binds together Article 8 against ableism and Article 5 for equality.

Third, what do these norms mean in the context of Bill C-7? Chair, it’s hard to see how a legislative proposal that extends a right to medically assisted dying to persons with disabilities who are not themselves close to death could send a signal that is compatible with Article 8, the obligation to combat ableism, combined with Article 5, the obligation to secure equal respect of the CRPD.

Why not? Under the bill, access to the right would be extended to those who have a grievous and irremediable condition, including a disability. One would naturally fear that the architecture of choice for persons with disabilities would be distorted given the legacy of accumulated disadvantages. However, even if safeguards could be strengthened to ensure genuine consent, the damage is still done by portraying — not directly but effectively nonetheless — that the lives of persons with disabilities are somehow worth less. So the issue is not the adequacy of the safeguards but the subtle message sent by the legislation in the first place, regardless of the safeguards.

Chair, your intentions and words as a legislator are always two different things. I’m sure no one in your committee or in your Parliament intends ableism or the intentional devaluing of the lives of your citizens with disabilities. But the extension of the right to assisted dying, as envisaged in Bill C-7, nonetheless, stands a real risk of reinforcing ableism in society. Listen closely to those most directly affected. Their antenna is highly attuned to ableism. When they see it, you should pause and reflect before proceeding. If anyone with a disability requests a premature end to their lives, then why not use the suggested 90-day period to build a service response to alleviate their living conditions and not just inform them about what is available, which may not be enough.

Chair, I cannot speak for the UN Committee on the Rights of Persons with Disabilities, but based on their past statements, I believe it is a fair inference that they would not hold Bill C-7 as currently drafted compatible with the UN disability treaty. This, to me, is a wholly avoidable risk. Thank you, chair.

The Chair: Thank you. With all the challenges you had, you still worked hard and we appreciate your perseverance. We will now go on to Professor Sheehy.

Elizabeth Sheehy, Professor Emerita of Law, University of Ottawa, as an individual: Good afternoon, honourable senators, and thank you for your hearing me. I am a Professor Emerita at the University of Ottawa where I taught criminal law and procedure for 34 years. I have researched and published extensively on the subject of the criminal law’s targeted and discriminatory impact on disenfranchised Canadians. I’m also the sister of Matthew, my younger brother, who has developmental disabilities as well as some physical disabilities. I have first-hand experience with medical professionals who have both directly and indirectly urged us to consider “do not resuscitate” orders when Matthew has required medical treatment.

I am testifying to add my voice to the clear and unequivocal opposition expressed unanimously by disability rights groups across this country to Bill C-7. The bill suffers intolerably in both its process and its substance.

In terms of process, the bill’s proponents ask us to accept the urgency of assisted death for people with disabilities rather than wait for the scheduled review of medical assistance in dying that was supposed to take place in 2020. Instead, we will effectively count the bodies after the deed is done.

We are also asked to believe that Bill C-7 is demanded by a Quebec Superior Court decision that declared unconstitutional the current law’s requirement that death be reasonably foreseeable. This is utter nonsense. Truchon is a trial-level decision that is not even binding on Quebec courts above the Cour du Québec, let alone across the country. It’s almost unheard of for the federal government to fail to defend its own law by invoking the appeal process. This is particularly true for a law developed so recently through compromise and careful consideration of its impacts.

In contrast, this government has actively fought multiple rulings by the Canadian Human Rights Commission and even the UN regarding discrimination against Indigenous women and children. One ruling was made five years ago this January, and our government is still spending millions resisting remedying its wilful and reckless discrimination against 165,000 Indigenous kids.

My final point about the appalling process unfolding around this bill is that the government has failed to engage in a thorough and respectful consultation with those groups who are clearly targeted by the bill. Only a handful of disability groups were consulted as if they were stakeholders like any others, and the unified opposition of all major disability groups in this country to Bill C-7 has been tossed aside as words on the wind.

The substance of this bill is even more intolerable. By removing the one safeguard that was promised as protection for people with disabilities when medical assistance in dying was legislated, the reasonable foreseeability of death requirement, the bill singles out disability as the precipitating condition for assisted death. No other group of Canadians will be supported in their wish to end their lives due to suffering. This amounts to discrimination on the basis of disability contrary to section 15 of our Charter. It imposes a significant social burden by its message that disabled lives are not worth living or saving. And its discriminatory effect is intensified because, as Professor Isabel Grant states, “We know that people with disabling and irremediable conditions are disproportionately older women, disproportionately Indigenous, and disproportionally unemployed, poor and socially isolated.”

The government’s pursuit of this bill regardless of its impact on people with disabilities and racialized communities raises the question of who this bill is for. The answer from disability activist Diane Coleman, founder and president of the organization Not Dead Yet is that it is for those who are well, but worried, well off and White. No doubt there may be some individuals with disabilities who do not fit this profile and who support this bill, but let us be clear. The Supreme Court has not pronounced a constitutional right to government-assisted death for those who are not dying. This bill allows individual demands to trample over the group-based constitutional rights of people with disabilities.

The preamble to the bill states that Canada is a state party to the Convention on the Rights of Persons with Disabilities and recognizes its obligations under it. But these are cynical, empty words. The bill runs roughshod over our obligations. A statement released by the UN Special Rapporteur on the rights of persons with disabilities is unequivocal. Under no circumstance should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying to terminate their life with the support of the state.

The claimed safeguards contained in the bill are nothing of the sort. The requirement that a person choose to end their life is meaningless where those choices are constrained by systemic inequalities like poverty, racism, homelessness and limited access to services. Even our Supreme Court has recognized that choice in this context does not relieve discrimination. The requirement that the request be witnessed by an independent witness is undercut by permitting the patient’s paid caregiver to act as a witness, even though we know that there is frequently a power imbalance in such relationships, as well as a high risk of abuse.

The requirement that the person be assessed over a 90-day period in order to explore whether there are treatments or services that could alleviate their suffering is far from adequate. Given that wait lists for chronic pain specialists are two years long in some provinces, and that for example Alberta has up to a one-year wait just for a wheelchair for people with spinal cord injuries, a 90-day period is a cruel joke. For what other group would we wait only 90 days before granting their wish to end their lives when they are not dying?

Finally, the requirements that the person be informed of available services and supports to relieve their suffering, and that along with the assessing practitioners that the person agrees that these measures have been seriously considered, are empty words. There is no corresponding obligation on the state or the assessors to seek out and actually provide the necessary resources to alleviate the person’s suffering.

From a personal perspective, I can only imagine that the question of whether my brother, Matthew, should be resuscitated will become an even more persistent inquiry than we have already experienced as a family.

I urge you to reconsider and withdraw this misbegotten bill and instead move Canada forth with a mandate of social, economic and political inclusion for those with disabilities. Thank you.

The Chair: Thank you very much, Professor Sheehy.

Senators, that concludes the witnesses we have for this panel. We have six witnesses. Ms. Gladu was supposed to come, but she may come at a different time. Senators, when asking the questions, please direct your question to the person you want to answer, person or persons.

We’ll start with the sponsor of the bill, Senator Petitclerc.

[Translation]

Senator Petitclerc: My question is for our former colleague the Honourable Senator Joyal. In your opening statement, you commented on mental health in Bill C-7. I’d very much like to hear what you have to say about the proposed concept of vulnerability as it applies to people who are disabled, and individual rights. As you know, Justice Baudouin was very clear in her decision and I quote:

Vulnerability should not be understood or assessed on the basis of a person’s belonging to a defined group, but rather on a case-by-case basis...

As you can see, in the preliminary debates, and even today, some people have concerns and say that they’ve heard that people are afraid that having a disability could become an acceptable reason for suicide according to the state. In short, could you share your positions and thoughts about this with us?

Mr. Joyal: Thank you for your question, Senator Petitclerc. I haven’t spent as much time on this aspect of the bill as I have on the matter of people suffering from mental illness. As Professor MacKay said earlier, my conclusion with respect to people suffering from mental illness yields two alternatives: Remove clause 2.1 or support a reference to the Supreme Court, as I had suggested to the Senate four years ago now, when the House of Commons refused to exclude or suspend the reasonably foreseeable natural death criterion. It’s clear that people with disabilities are interested in the bill because the fourth reasonably foreseeable natural death criterion disappears, which is to say that the Quebec Superior Court in Truchon concluded that this criterion was unconstitutional. That is also my position, as it was on the reading of Bill C-14.

Where do things stand at the moment in the more general context in which we find ourselves, now that this criterion is gone? This takes us back to the original four criteria in Carter. What are they? You know them well. Competent individuals with a grievous and irremediable medical condition who can express their free and informed consent and who are suffering intolerably. This gets us back to the basic criteria in Carter. Unless a Canadian decides to challenge the exclusion of reasonably foreseeable natural death and restart the judicial process… In my view it would be inhuman to impose this burden on another Canadian citizen.

What appears to me to be very clear in the current context is what the Supreme Court said in Carter. I would like to quote what the Supreme Court concluded in paragraph 105:

After reviewing the evidence, she [the judge] concluded that a permissive regime with properly designed and administered safeguards was capable of protecting vulnerable people from abuse and error. While there are risks, to be sure, a carefully designed and managed system is capable of adequately addressing them [...]

That was paragraph 105 of Carter. In other words, the Supreme Court was very sensitive to the vulnerability of some groups of people. As you know perfectly well yourself, and you are one of the spokespersons for the disabled individuals who feel directly concerned by the situation, whose reaction is to ask why wouldn’t they get discouraged. They don’t have the assistance they need — as Professor Sheehy mentioned earlier — they don’t have the social support or the medical support required and they’re losing interest in living.

If I remember correctly, you even mentioned it in your address, that in the days following your accident, you were suffering so much that you yourself thought of ending your life.

Senator Carignan: My question is for Senator Joyal and Professor Taillon. Welcome. It’s always a pleasure to see you. My question is for both of you, and it concerns the evidence given this morning by public servants who told us that the definition of mental illness is unclear, but that the support documentation may indicate that someone with Alzheimer’s or who is being treated by a psychiatrist is not covered by the definition of mental illness, and hence is not excluded from MAID. They say that courts often use these documents to reach the legislators intended conclusion. I am of course concerned about this. I’d like to hear what you have to say about the cogency of using documents like that to interpret a section of the Criminal Code.

Mr. Joyal: Thank you, senator, for the question. I will be brief in order to give our colleague, Professor Taillon, the opportunity to reply. I believe that this exclusion is much too general, and that there is even some doubt about it from the psychiatric standpoint. The document claims that biodegenerative diseases are not mental illnesses. That’s what I understood when you said that Alzheimer’s, for example, was not a mental illness. It’s a mental loss, but caused by a physical condition.

Now, you’ve heard — I’ve read the depositions from witnesses received in November — that there are circumstances in which people may be suffering from a physical condition of a kind that has an impact on their mental condition. Consequently, they are no longer capable of giving their free and informed consent.

Both types are mixed together in the definition of mental illness. Honourable senators, we are dealing here with criminal law, as you know. In criminal law, one must be extremely precise and clear to avoid indirectly affecting or including certain people who would not even know that they are covered by the act. It strikes me that this definition, if the bill is to remain as is, needs to be much clearer and accurate than it is now. I’ve read the accompanying documentation and it is certainly not adequate to allay your concerns.

Mr. Taillon: I would add that it is not unheard of to use documents other than statutes or regulations for purposes of interpretation, but in criminal law, it strikes me as inappropriate or in any event less frequent, particularly when the issue is mental health. It would be very surprising for provincial courts and legislators, and for Parliament, to reach agreement on a single solution for all illnesses related to mental health. In all likelihood, some illnesses would have to be distinguished from others.

The purpose of my intervention here is to draw the attention of Parliament to the fact that as soon as it introduces a prohibition, or a safeguard for those affected by mental illness, it attracts debate on the exclusion, which could lead to rather categorical court decisions that would afterwards prevent it from being able to come up with remedies.

Conversely, if the legislator shows restraint and allows other stakeholders to establish solutions and balances on the mental health issues, then if problems were to arise, this option, this possibility, would still be available for a safeguard; however, acting too proactively could lead the courts to get stuck on this particular issue, which would probably require detailed distinctions with respect to the type of illness and the circumstances.

[English]

Senator Batters: My question is for Professor Sheehy.

In an opinion piece you published in December, you stated that this legislation:

. . . promotes an ableist stereotype that significant disability is worse than death, devaluing the lives of people with disabilities by suggesting that suicide prevention for this group is less important than for others.

Your article also links to a Department of Justice Canada backgrounder that essentially raises the same concern.

So while many medical experts in our pre-study demonstrated that the desire to die among MAID applicants often wanes with time, some have tried to claim that the concept of suicidality is completely distinct from a MAID request.

Professor Sheehy, could you elaborate on your assertion that the government’s message with this Bill C-7 is that suicide prevention for this group is less important than others?

Ms. Sheehy: I have read the Truchon decision, and I have struggled with the distinction that the court drew between “suicide” and “assisted death.” Many of the criteria the court used to draw that line between those two forms of ending one’s life are not persuasive, for the most part.

I understand that many people are offended by the use of the term “assisted suicide.” However, this bill is situated in the context of the Criminal Code, which creates a crime of assisting suicide as being a form of homicide. So both MAID and this proposed extension of MAID are, in fact, considered by the criminal law to be forms of assisted suicide.

I am not persuaded that there is a clear line between assisting suicide and MAID. I think that to offer assisted death as a response to the suffering of many people with disabilities whose suffering, in fact, is rooted in their despair and inability to have home care, for example, as one service already mentioned, or even to be able to afford pain relief. To call this assisted death, as opposed to assisted suicide, is really a way to hide the reality of what we’re doing here. We’re willing to sacrifice those lives rather than insist that we provide enough resources for them to have dignified, secure and healthy lives.

Senator Batters: My second question is for Mr. Quinn, the UN Special Rapporteur on the rights of persons with disabilities.

Mr. Quinn, could you please elaborate on what rights are protected under article 10 of the UN Convention on the Rights of Persons with Disabilities? How is the right to life on an equal basis with others unique, and do you believe that article 10 is violated by Bill C-7?

Mr. Quinn: Thank you very much. I think the core right is in article 5 on equal treatment combined with article 8, which weighs heavily against ableist and stereotypical assumptions. Then it’s a question of applying article 5 and article 8 to article 10. The UN Human Rights Committee, the committee that deals with the civil and political rights covenant, allows for some slippage in the concept of the right to life [Technical difficulties] and allows for some assistance in dying, but we’re very insistent on exceptional safeguards. In the context of the 2016 amendments to your Criminal Code, the previous United Nations Special Rapporteur on the rights of persons with disabilities as well as the UN Committee on the Rights of Persons with Disabilities, we’re only dealing with that situation. We’re not dealing with the purported extension of the medically assisted right to die outside of the proximity of death, so to speak. I would personally view that states have some latitude when it comes to article 10, but I think that that latitude is cut down very significantly, particularly in the disability context when you remember the application of article 5 and article 8.

I do recall the Charter Statement in the House of Commons, which said something to the effect that the 2016 bill made no space for stereotypical assumptions, but I actually think they creep back into it, particularly with this purported extension. Thank you.

The Chair: I have two questions. My first question is to the human rights commissioner. How does the commission monitor that rights are preserved? Do you collect data? If yes, do you have a plan to have any mechanism to collect data on MAID based on race, ethnicity or religion?

Ms. Landry: Thank you, senator, for your question. I’m going to turn to our senior policy advisor to answer this question.

The Chair: Thank you.

Marcella Daye, Senior Policy Advisor, Canadian Human Rights Commission: Thank you very much. I think that embedded in your question is perhaps two separate questions. The commission certainly does gather data regarding complaints filed with the Canadian Human Rights Commission under the Canadian Human Rights Act, and it will gather data under its new mandates, which it has assumed over recent years under the Accessible Canada Act, for example, and the Pay Equity Act. It serves an audit role under the Employment Equity Act. And so we do gather those kinds of data.

Of course, we have a new role, which has just been established recently, as the national monitoring mechanism under the UN CRPD. We’re just beginning that role, so we have not begun any data gathering for monitoring purposes. We are in the stage of continuing consultation with communities, with people with disabilities and the groups that represent them to get their input on what they want to see from a monitoring mechanism within Canada.

With regard to monitoring MAID, our sense is that the commission certainly supports an independent mechanism to monitor MAID. However, we’re not certain that the Canadian Human Rights Commission is the appropriate place for the initial gathering of the data, which, for example, is presented in the annual reports for MAID right now. It may be that type of data gathering would be more appropriately situated in an agency that has the sole focus of accountability for that data under MAID. We certainly hope that once that data is gathered that it would be made available to the commission for the purpose of our analysis and our reporting in our role as the national monitoring mechanism.

The Chair: Thank you. I have a question for the United Nations —

Ms. Daye: We do have some additional input on the data gathering issue, if you have time.

The Chair: That answers my question. Thank you so much.

I’d like to ask a question of the United Nations special rapporteur. I really appreciated reading your recent report on the impact of overlooking ableism and ableist attitudes with regard to the impacts of Bill C-7. Would you agree that racism, particularly how racialized people will be impacted by this bill, is important? Would it be a valuable lens for legislators to be studying bills that are inextricably linked to people’s human rights? Should they be looking at race-based and Indigenous identity data collection?

Mr. Quinn: I think an intersectional perspective is incredibly important when it comes to landmark bills like this. I know you have a large Indigenous population with disabilities in Canada. I’m sure that’s a major factor in your consideration.

It’s not so much the statutory language you use or you intend, but the kind of habitat that it falls into and the background culture and legacy of exclusion. You have to have a heightened antenna to that. The ableism will not arise through your specific intention. It’s not there by intention in the wording, it’s actually there in the impact in law [Technical difficulties]. The books are one thing, but the law in action is quite another thing. You have to take that societal impact into account in making your determinations.

Senator Plett: I have two questions, one for Professor Sheehy and one for Mr. Quinn. I will be brief, and hopefully I can get both answers in.

Professor Sheehy, in an opinion piece you published with Professor Isabel Grant and Archie Kaiser in December, you marvel at the decision of the federal government to capitulate to a lower court ruling, thereby arguing the assisted suicide regime for the entire country. You say:

Given that the current regime of MAiD has already saved the federal government $87M in health care costs, one might be forgiven for wondering whether the federal response here is driven by crass economic calculations.

Professor Sheehy, can you elaborate on that comment? In your view, how rare is this type of action from a federal government based on a lower court ruling by one judge in one province? What do you believe the government should have done instead?

Ms. Sheehy: Well, I believe that they should have instead appealed this decision. They should have used their considerable resources, to put together an appeal to the Quebec Court of Appeal and, if necessary, the Supreme Court of Canada.

I can’t speculate about the financial motivations of the federal government. What I would say is that extending medical assistance in dying to people who are not in the process of dying and based on disability is going to be a huge cost saving to the provinces. I would suggest it’s even a further disincentive to the provinces in terms of robust funding of support and community services for people with disabilities.

It’s indisputable that we’re going to see a real push on the part of people with disabilities to get access to MAID in circumstances where their suffering could be resolved by adequate community and medical support that we may be unwilling to provide.

We already have at least 14 cases of real human beings, who have been reported in the media, who we know have either sought or seek medical assistance in dying because they did not have access to the resources they needed to live dignified and healthy lives. It’s not theoretical.

Senator Plett: Thank you. Very quickly, Mr. Quinn. Your predecessor, Catalina Devandas Aguilar — I’m sure I butchered that name pretty much — spent a week in Canada reviewing many cases, including the case of Roger Foley. Roger Foley, you will remember, was offered assisted dying repeatedly when he demonstrated no such interest and was instead seeking assisted home care.

At one point, Ms. Catalina Devandas Aguilar wrote:

I urge the federal government to investigate these complaints and put into place adequate safeguards to ensure that persons with disabilities do not request assistive dying simply because of the absence of community-based alternatives and palliative care.

This letter, Mr. Quinn, was published almost two years ago. Has there been any dialogue between your office and the federal government since? If so, has the Canadian government adequately responded to the recommendations? Do you believe this legislation includes any safeguards to protect against the risks that your predecessor highlighted?

Mr. Quinn: Thank you very much. I’ve only been in post for three months, but I promise to investigate that for you and circle right back to give you an answer.

Senator Plett: Thank you very much.

Do I have any time left, chair?

The Chair: No. It’s almost over.

Senator Plett: Thank you.

Senator Cotter: First, an observation about the quality of the panel we’re hearing from today. We have outstanding human rights leaders, constitutional law experts in our country, and members of the Order of Canada and the Order of Ontario. We are really blessed by your presence and that doesn’t even include constitutional experts in the Senate itself, Senator Gold.

What I’m thinking, as I listen to this, is that the debates and concerns we’re hearing now cry out for an authoritative answer. We are ultimately going to get that. As you might anticipate, this causes me to want to ask two questions about the need for a constitutional reference.

I have one question for Professor MacKay and one question for Senator Joyal.

Professor MacKay, can you say whether this is the kind of situation that can be constructed into a constitutional reference for the Supreme Court to consider?

Senator Joyal, I want to ask you to expand on the initiative you undertook in 2016 to propose an amendment along those lines and whether you think such a one is called for this time around. Thank you.

Mr. MacKay: First of all, my answer is that I think it can and should, as my recommendation suggested, although I defer in part to Senator Joyal who has more experience on this. I think the kinds of questions that need to be asked, actually, on two critical issues before us, are whether or not the expansion of MAID to take away the requirement of reasonably foreseeable death is potentially a section 15 violation, as so eloquently stated by Professor Sheehy and Isabel Grant and a lot of other people. As I stated in my brief, the longer version, I’m sympathetic to that view, although it’s hard to know exactly how to handle that one.

I think it’s a perfect question for a reference to the Supreme Court of Canada, and even though I think the exclusion is clearer, at least in my mind and those of Senator Joyal and others, that it should either be dropped or suspended or some such thing. Even there, it would be helpful to have that.

I want to pick up on the point, just briefly, a couple of people made that it is extremely unusual to take a trial decision, however good it might be, from one judge in one province and say we should, therefore, change something as big, significant and potentially problematic as the right to die with medical assistance.

I think it’s actually an ideal candidate and could be carefully stated in a way that would have an impact on people from disabled communities and others who ideally would have input into how those questions would be set up. Thank you for the question.

Mr. Joyal: Thank you, senator, for your question. In fact, four years ago when we were facing the House of Commons’ decision to refuse the amendment — to remove the criteria of reasonably foreseeable death — as a fallback position in the Senate at that time when the bill came back from the House of Commons refusing the Senate’s amendment, I proposed, as a way out of the conundrum, to ask the government to make an immediate reference to the Supreme Court on this very criterion of unreasonably foreseeable death and suspend the application of that criterion for the time that the Supreme Court would consider it.

In the present case, it’s very timely. It’s one of the options that I propose in my brief, and I’ll tell you why: because the Supreme Court has just ruled, less than two months ago, on Attorney General of Ontario v. G case regarding this very issue of the rights of people suffering from mental illness.

In other words, the court has already appraised the status of the law and its relation to the Charter, section 7 and section 15. Those were the two articles of the Charter that were at stake in the case I just quoted, Attorney General of Ontario v. G. In other words, the court is ready now, more or less, as it has almost everything it needs to come forward with a decision on the issue of the admissibility of people suffering from mental illness to MAID.

On the other hand, on the criterion of unreasonably foreseeable death, as Professor Sheehy has mentioned, when I read the Truchon case, a decision from the Superior Court of Quebec, I stated publicly that my position was for the government to appeal, to make a reference to the Supreme Court, and not to impose on Mr. Truchon and Ms. Nicole Gladu another time frame of years of judicial process against two people who had been fighting for their rights among themselves.

In order to alleviate the conditions of Canadians finding themselves in that position, as Julia Lamb in B.C. was in the same position at that time, there were two cases in the Superior Courts of two provinces, whether to go to the Supreme Court immediately.

The Chair: Thank you, Senator Joyal.

[Translation]

Senator Dupuis: My first question is for Professor Taillon. Professor Taillon, in your presentation you spoke about the fact that the federal government should be content with passing laws that are not too detailed, with being more general, and with allowing the provinces to develop their own provincial laws.

My question concerns the criterion for death that is not reasonably foreseeable, as reintroduced into Bill C-7, but which has come up against more serious barriers for those whose death is foreseeable.

When you spoke about not formulating a single standard that was too detailed, does this amount to saying that Bill C-7 might have some criteria that are already in the act, but that all references to the progression of an illness should be eliminated?

In other words, to ensure that precautions are taken for existing criteria, which focus on the quality of the consent. Is this what you might mean by legislation that is not too detailed?

Mr. Taillon: Thank you for your question. Yes, this is somewhat of a paradox and it is to a degree counterintuitive, but the essence of my message is to say that in striking this difficult balance between permission and protection, paradoxically, the federal Parliament can provide better safeguards if it holds on to a few of its cards rather than immediately making an effort to specify the rules, particularly those that would lead to very serious restrictions, such as a mental health exclusion like the 90-day assessment period. The more explicit the rules, the more likely they are to be challenged. Once invalidated, they become written in stone in the Constitution, and the federal Parliament would lose its ability to take remedial action in the future. Medical assistance in dying is a new subject, one in which Canada is positioned in the forefront, and has concerns about people with disabilities and vulnerable people, which several people have raised today and for which we have not yet found the perfect recipe for the rule of law that would allow the provision of safeguards for these people under any circumstances. Hence the more we move forward with the details, the more we are exposing ourselves to invalidations, as opposed to holding back some cards for the legislator for any future remedies that may be required.

Senator Dupuis: Thank you. I have a question for Mr. Quinn, UN Special Rapporteur. Mr. Quinn, you referred to the international convention that protects rights and guarantees true equality for people who are disabled.

There is something about the protection of vulnerable people while they are alive, and providing support services for them to assure them a proper quality of life. With respect to medical assistance in dying, disabled people were very clear in explaining to us that it was essential to respect their decision to determine for themselves when they could no longer continue to live under their circumstances and that it was paternalistic to try to prevent them from making this decision for themselves. What do you have to say about this?

[English]

Mr. Quinn: I think this is getting close to some deep truths. Obviously, people with disabilities have autonomy rights, just like everybody else. But equally obviously, there is a countervailing article on equality, or mandate for equality. One has to pursue and push forward autonomy rights by paying attention also to the kind of ecosystem within which people find themselves. I think the idea of some sort of reference to a supreme court to really think through the balancing between these two rights is actually where it’s at, and I’m not sure that has been done well thus far.

[Translation]

Senator Dupuis: Thank you.

[English]

Senator Boyer: My question is for Chief Commissioner Landry and her team. As you are well aware, Indigenous people in Canada who are disabled face multiple forms of discrimination. They must deal with the effects of colonization and racism, as well as the societal perceptions of their physical and/or mental abilities. Unfortunately, Indigenous people often do not receive the care and services they are entitled to because of jurisdictional disputes between federal and provincial governments.

In your opinion, should the government be removing the foreseeable death clause if there still exist jurisdictional disputes over which government should fund necessary health services for Indigenous persons with disabilities? And what steps should the federal government take to ensure that Indigenous persons living on reserve who are disabled do not access MAID out of desperation because they are unable to access necessary health services?

Ms. Landry: Thank you, Senator Boyer, for your question. Marcella will answer this question.

Ms. Daye: Thank you, Ms. Landry. Certainly we share the very serious and long-standing concerns about the impact of colonization and the intergenerational trauma that has left the conditions of systemic discrimination affecting Indigenous populations in Canada today. We’ve raised this concern a number of times, both domestically and in international fora.

You have raised a couple of questions. One of them is the shared jurisdiction, and that is always a tricky one. We’ve been encouraging the governments responsible for human rights to reinstitute regular meetings to discuss the shared jurisdiction on human rights issues, among themselves on a regular basis, to help iron out or to work through jurisdictional issues before they arise in individual cases. We certainly want to ensure that takes place in a manner that avoids particularly tragic circumstances like those we know of in the past.

You’ve also raised the question of ensuring that Indigenous persons on reserves have the appropriate services, both to support their health and well-being, but also perhaps to receive MAID in appropriate manners. We strongly support some of the testimony you have heard, about the importance of culturally appropriate services, both in terms of delivering health services overall and in the process of delivering a dignified death where that is requested. That must ensure the involvement of the communities themselves, including, where appropriate, the involvement of elders, so that the events around providing a dignified death are not narrowed to a medical physician-oriented process but that they can fully encompass the ceremonial and cultural importance that exists for many Indigenous persons. In that way, it can help to move forward on reconciliation in an individual manner. Also, it can also ensure that we are respecting the role of Indigenous persons as we seek to provide them with dignified services in health and in death.

Does that answer the question?

Senator Boyer: Yes. Thank you, Marcella. And thank you, chief commissioner.

[Translation]

Senator Keating: My question is for former Senator Joyal with whom, unfortunately, I never had the opportunity to work.

First of all, Mr. Joyal, I would like to thank you very much for your ongoing contribution and for your enlightened discussion of the mental health issue and recent case law further to the Truchon decision.

You mentioned in your presentation that there were two options for mental health. The first was to reject the bill and the second was a referral to the Supreme Court. A third option, which would be the addition of an exclusion, was also discussed by several people. In other words, the exclusion of mental health would be allowed to go forward, but with a time limit, let’s say 12 months, to allow the federal government to do more work on the mental health issue.

I apologize for putting you on the spot, but would you be more comfortable with a provision of this kind for a constitutional analysis than with the existing wording without the exclusion clause? Thank you.

Mr. Joyal: Thank you for your question, Senator Keating. I’d like to clear something up. My suggestion was not to reject the bill, but to remove clause 2.1, and I want to be clear on that.

Senator Keating: Yes, of course. Thank you.

Mr. Joyal: I just wanted to be absolutely clear about this.

Your question is about whether it might not be better to add a sunset clause to the bill with respect to the application of clause 2.1. In other words, you would vote in favour of clause 2.1, but another clause would be added to mention that the government would have a 12-month period to address questions concerning the ability to offer medical assistance in dying to people suffering from mental illness.

The sunset clause would not challenge the actual right to medical assistance in dying. That right is, in my view, confirmed in Carter. What the bill would do is suspend the right of access to medical assistance in dying for a period of 12 months, as clearly set out in the act. It should not take the form, as stated in the preamble, of asking Parliament to consider medical assistance in dying within a 12-month period. Parliament had previously been asked to consider the impact of Bill C-14 within a 4-year period, which took us to June 2020, and we all know what conditions Parliament has been working under since the arrival of the COVID-19 pandemic. What will conditions be in June 2021? No one knows, though it is hoped that the situation will have improved. But no one can guarantee this.

I also read the commitment made by Minister Lametti when he appeared here in November 2020, to the effect that he would do his best to get the government started on the study. That’s not good enough. It’s not a real commitment, but rather a political promise, which is not a legal constraint. The legal constraint must be extremely clear about the start date of the time period and about what should happen within this time period. What kind of study or proposal will the government have committed itself to bring before Parliament or to table in Parliament as the process to be followed for individuals suffering from mental illness?

It would have to be extremely well defined and limited in terms of time, and not just a general request to consider the impact of the act without holding anyone accountable. A clearly identified and effective form of accountability within an accurately specified time period is required in the bill. That’s what would make it possible to temporarily suspend this right; but when a right is suspended, it is not denied.

In the meantime, someone could still go to court and describe their specific conditions, and request authorization for access to medical assistance in dying because they meet the four criteria in Carter. So that too is important, meaning that someone suffering from mental illness is not prevented from having medical assistance in dying, and that person could still in the meantime request authorization from the court, as was the case before...

Senator Keating: Thank you. That answers my question.

[English]

Senator Harder: My question is for the Special Rapporteur, Mr. Quinn. He will be aware that Benelux countries have allowed MAID without much restriction and outside of the end-of-life context for many years now. I ask whether his organization has looked at MAID legislation in those countries and its impact on the disabled community, and has the permissive nature of the legislation in those countries led to an over inclusion of disabled persons? And related to that, is there any evidence that MAID legislation in the Benelux countries has led to people with disabilities feeling subtly pressured to end their lives prematurely due to attitudinal barriers as well as the lack of appropriate services and support?

Mr. Quinn: Thank you, sir. As I said at the outset, we’re looking at international trends. The legislation pending before your Parliament, similar legislation is pending before three or four parliaments around the world at the moment. We’re actually gathering intelligence on that legislation to find out where it’s at. We have not yet made a comparative study of how the legislation in the Benelux countries is working, but we will certainly look into that and come back.

Senator Harder: Do you have a time frame for that, because the Benelux experience is some years now?

Mr. Quinn: No. We’re just beginning. I’m just three months in post. We’re putting our work program together, and that’s obviously going to form part of the work program. So we don’t have a timeline yet, no.

Senator Harder: None of your predecessors inquired therein?

Mr. Quinn: No, but that’s why it’s ripe to be an issue for the upcoming mandate.

Senator Harder: Thank you.

[Translation]

Senator Boisvenu: My question is for Senator Joyal. Thank you for being here today.

I’m returning to degenerative diseases, including Alzheimer’s and dementia. In the bill, there appears to be confusion between the minister’s position this morning, in which he said that it was not possible to allow power of attorney for these patients, while the wording of the bill itself appears to allow that it might be possible for such patients, with assistance from their doctor, to pre-authorize the use of medical assistance in dying in the event of total incapacity or loss of consciousness.

There appears to be a gap in this act, making it subject to interpretation and potentially leading many patients to initiate legal challenges, as I was telling the minister, or to go to other countries or American states which are more open to or even totally open to suicide in certain instances. Do you believe that this bill needs to be clarified in terms of degenerative and psychomotor diseases?

Mr. Joyal: Thank you very much for your question, Senator Boisvenu. I’m very concerned about the current confusion surrounding the bill with respect to biodegenerative illnesses like Parkinson’s, Alzheimer’s, and certain other diseases of this kind that affect people physically, but that may of course, inherently, also affect their cognitive capacities.

The minister says in the accompanying notes that these people are not suffering from mental illness, and that there is a stage in the progression of diseases with which you are familiar, like Alzheimer’s and Parkinson’s, at which the person completely loses the ability to give consent. There are also other physical illnesses that can cause suffering and affect a person’s mental capacities, meaning that a person has lost control over the ability to consent, and that is what the bill would appear to be covering when it says that if someone at a certain point in the progression of a physical disease were to lose the mental ability to consent, a prior authorization could be signed and those close to that person could confirm that this had been done, then that person would be entitled to medical assistance in dying.

Similarly, for mental illness, there are very specific conditions. The psychiatrists who have given evidence have said that there are very precise conditions at the end of which people who are suffering from mental illness do not lose their ability to consent and to remain in control of their decisions with respect to their health. It is a fundamental right set out in section 7 of the Charter.

The bill has some grey areas that cause a form of permanent uncertainty among people because the concept of mental health, as explained in clause 2, is so general that it can include both everything and nothing at the same time, because the bill provides an exception.

In its preamble, the bill maintains another area of uncertainty by saying that Parliament will study prior consent for certain forms of mental illness. Everything is, after a fashion, put on the table at the same time without specifying any precise criteria. Don’t forget that we’re not dealing with criminal law here. In situations like this, how can doctors disentangle everything? They’ll probably apply the theological principle to the effect that when you doubt, abstain. But when you abstain, you are condemning people to what the Supreme Court itself found: They will either prematurely put an end to their lives through violent or dangerous means, or suffer until natural death occurs.

This brings us back to the fundamental point that led to Carter. In my view, this is precisely what is imprecise in the bill. This lack of precision that is being kept in the system needs to be clarified if we want everyone to be entitled to equal benefit under the law. Section 15 says that every individual has the right to equal benefit of the law. However, owing to the lack of clarity being introduced into the bill, in the explanatory notes, the preamble and clause 2.1 as worded, some people are not in a position to exercise the same right. In my view, that is where the bill is defective.

Senator Boisvenu: Thank you, Senator Joyal.

Senator Carignan: My question is more a request for clarification, because Senator Keating covered this point very well with Senator Joyal, and it concerns the sunset clause.

Did you talk about an individual being able to submit a request for an exemption during the time period introduced by the sunset clause? Should this exemption or recourse be placed in an amendment, or is it clear in your opinion that it will be accessible?

Mr. Joyal: Indeed, what I am suggesting is that essentially, the Supreme Court had added something to Carter. It had allowed Parliament time to adopt a bill to give effect to the Carter decision. If you recall, we had granted a time period of one year. Elections were triggered and a six-month extension was allowed, followed by another period. In the meantime, a Canadian citizen could invoke the conditions of the Carter decision and ask the court for authorization to put an end to their life. That is exactly the case I cited in the Alberta Court of Appeal decision, in 2016, which was unanimous, for a person wishing to benefit immediately from their right of access to medical assistance in dying, while Parliament had not yet legislated on it. Under the same conditions, a person suffering from mental illness in Canada would normally be recognized as having the capacity to go before a court if that person felt that the right needed to be exercised immediately in the interim during which Parliament gave the government an extremely precise amount of time to come up with a monitoring process for the system under which that right could be exercised, which would then be applicable generally afterwards. In the meantime, I would not deprive any Canadian from exercising their right to medical assistance in dying if they are suffering from mental illness, as they can now under Bill C-14.

[English]

Senator Batters: Senator Joyal, my question is for you. It’s nice to see you again. In your view, Senator Joyal, which specific illnesses are irremediable?

Mr. Joyal: Thank you very much, Senator Batters. It is a pleasure to see you. Unfortunately I am not seeing you face to face. I would have loved to do that.

I believe you have heard some expert witnesses, and I remember Dr. Rajji, for instance, whom you have heard from Toronto. The experts, the psychiatrists, say there are three groups suffering from mental illness: 30% would be in a situation which could be cured; 30% would be in between, where they might be cured but we don’t know; and 30% of people we know can’t be cured. Those are irremediable.

It is for the psychiatrists, in fact, to come up with a diagnosis that determines in which group of people that patient would find himself or herself. So it’s for the psychiatrists to determine that.

I have the testimony of Professor Rajji.

The Chair: Senator Joyal, we will not be able to go to that. Thank you so much.

Senator Pate: Following up on Senator Harder’s question, I would ask that the Special Rapporteur ensure that a review include looking at the amount of GDP percentage spent in different OECD countries on health and long-term care as part of the analysis of the measures taken in addition to the application of the legislation for both the Special Rapporteur and the chief commissioner.

As some of you know, I’ve spent the better part of four decades working in prisons. Since the introduction of MAID in 2016, our office has received many requests from prisoners, most of whom have mental illness issues, some of which were generated in and by the prisons, some of which they had pre‑existing, who are requesting medical assistance in dying.

My question to both of you is this: Would you agree that Canada needs to take steps to ensure that prisoners with disabling health issues who request medical assistance in dying are first transferred or released into a community health setting?

Mr. Quinn: Yes, we will include that in our research. Thank you for the suggestion. We will be opening up a project on prisoners with disabilities worldwide, so I’d love to come back to you on that.

Sheila Osborne-Brown, Acting General Counsel and Director of Legal Services, Canadian Human Rights Commission: Thank you for the question. Yes, in the Aging and Dying in Prison report that the chief commissioner mentioned, we do say that prison is not the appropriate environment to provide end-of-life care, and that would include medical assistance in dying. Thank you.

[Translation]

Senator Miville-Dechêne: I have a short question for Mr. Joyal. I understand your line of argument about the fact that depriving people with mental health problems from medical assistance in dying violates sections 7 and 15 of the Charter. However, I have trouble understanding why you don’t consider an argument that is scientific rather than legal, by which I mean that psychiatry is truly divided over the fact that it is not always possible to know whether a decision by a mentally ill person to end their life or commit suicide is the result of the illness or stems from much broader criteria. So it seems to me that your legal argument, which is very strong, lacks this consideration as to whether scientific evidence should be taken into account as a precautionary measure and not move too quickly on this matter.

Mr. Joyal: Thank you, Senator Miville-Dechêne, for that question. As I mentioned in response to the question from your colleague Senator Batters, we’re dealing here with probabilities. It’s therefore extremely important to remember that there is consensus among psychiatrists about people suffering from mental illness, and I explained this clearly in my brief, which includes the following quote:

Patients whose sole underlying medical condition is a mental disorder should not be systematically excluded from MAID on the basis of their diagnoses.

In other words, people suffering from mental illness are capable of determining their condition, and to give consent as to whether they want treatment or not. They have not lost this fundamental right and that’s what the psychiatrists have affirmed. There is clear consensus on this question. I would refer you to the briefs from the two associations.

There are people suffering from irremediable mental illness. Psychiatrists, on a case-by-case basis, are responsible for analyzing such instances. The vast majority of people suffering from mental illness are not in this category. They are either curable or stable. However, for a percentage of them — Dr. Rajji explained this in his testimony in November — the condition is irremediable. This limited minority of patients suffering from mental illness would have access to medical assistance in dying following medical consultations and assessments, as provided in the bill. Consequently, they cannot automatically be excluded indefinitely without a case-by-case assessment of the condition of each person suffering from mental illness who is eligible for medical assistance in dying. Particularly as the doctors have said —

[English]

The Chair: The last question is from Senator Kutcher. It really has to be two minutes; otherwise, I’ll have to cut you off.

Senator Kutcher: My question is for Professor Taillon. We heard from Professor MacKay and Senator Joyal that a sunset clause might be an option in this bill. I wonder what your thoughts are on that.

[Translation]

Mr. Taillon: A sunset clause would be preferable to a generalized exclusion without a waiting period, but that too is a restriction that would remain open to a legal challenge. Personally, I’d prefer to see these restrictions come from the provinces and the professional bodies, and for this to give rise to many discussions in this dialogue between legislators and the courts. If Parliament insists on applying this restriction, that is to say a sunset clause, it is much better than a definitive exclusion, at least in my view.

[English]

The Chair: To all the panellists, you can see that there is such a lot of interest; we could listen to you all day. It’s really, really interesting. I had the terrible task of cutting people off, which is not a job that I’m suited for, but I want to say to you all thank you very much. I can see that this is just a beginning of a conversation. We will be having many conversations with each of you in the future. I’m sure you’ll be invited back as well for future matters. I want to thank each and every one of you. Under these very difficult circumstances, you all came through. Thank you very much.

We have today with us David Shannon. Mr. Shannon is an advocate for persons with disabilities and has worked tirelessly advancing the rights of the disabled and other minority groups in Canada and abroad.

We have Dr. Naheed Dosani, a Palliative Care Physician and Health Justice Activist. Dr. Dosani is an advocate for palliative care access for the homeless and structurally vulnerable people.

[Translation]

Ms. Danielle Chalifoux, lawyer in health law at the Institut de planification des soins du Québec. Ms. Chalifoux has sat on several committees, and was the chair of the health law committee, the equality committee and the seniors law committee of the Canadian Bar Association, Quebec division. She was also a member of the Barreau du Québec’s right to die in dignity committee.

[English]

And we have Jonathan Marchand, Chair, Quebec Cooperative for Independent Living, (Quebec Coop ASSIST). Jonathan is an advocate who strives to draw attention to dehumanizing conditions in long-term care.

We have Sarah Jama, Lead Organizer, Disability Justice Network of Ontario. It is a youth-led, grassroots organization based in Hamilton, Ontario, led by Black and racialized disablement. Ms. Jama has a passion for community engagement, disability justice and activism.

Then we have Professor Heidi Janz, who is an Adjunct Professor at John Dossetor Health Ethics Centre at the University of Alberta and Chair of the Ending-of-Life Ethics Committee for the Council of Canadians with Disabilities. Professor Janz’s testimony is a recording and then the professor will ask questions.

We will start with Professor Heidi Janz.

Mr. Palmer: We will start the recording right now.

Heidi Janz, Chair, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities: Senators, thank you for the opportunity to speak to you today. Ableism is discrimination against people with disabilities based on the belief that typical abilities are superior. Like racism and sexism, ableism classifies entire groups of people as less than and perpetuates harmful stereotypes. Ableism remains, in the words of Canadian disability scholar, Gregor Wolbring, “. . . one of the most societally entrenched and accepted isms.”

The plan to expand MAID legislation is an example of ableism. Research indicates that people with disabilities frequently encounter discrimination in health care settings even in ordinary times. Studies have consistently shown that health care professionals substantially underestimate the quality of life of people with disabilities. Erroneous judgments about the quality of life experienced by people with disabilities can result in their treatment options being either limited or altogether eliminated. At the heart of such decisions is what disability scholar, Joel Reynolds, has termed the ableist conflation of disability, suffering and death. Running contrary to the ubiquitous public health mantra since the pandemic “we are all in this together” has been a development of critical care triage protocols which list the pre-existence of a disability as an exclusion criterion for critical care — [Technical difficulties]

Mr. Palmer: Let’s move on to the next witness and I’ll see if we can figure out something for the statement of Ms. Heidi Janz.

The Chair: Maybe go to Mr. Shannon. I already have explained who Mr. Shannon is. After Mr. Shannon, we’ll go to Dr. Dosani.

David Shannon, Barrister and Solicitor, as an individual: Thank you very much, chair.

Hamlet asked whether it is “nobler in the mind to suffer the slings and arrows of outrageous fortune . . . .” Shakespeare left that question open and your task with this proposed amendment is far graver because you must answer the question, senators.

I state that as an individual who has been a quadriplegic for 40 years and I’ve practised law for 25 of those years.

It is my opinion that the proposed legislation will limit the right to life rather than protect it. It is divorced from the well‑researched social context that is the reality of disability. It sets arbitrary dates for the adjustment to a disability, presupposes that to be disabled is to suffer intolerably, and does not link doctor-assisted suicide to the imminence of death. It’s flawed and is built upon a prejudicial and faulty premise.

As the UN committee — just last Monday, January 25 — noted with alarm, disability should never be a ground or justification to end someone’s life directly or indirectly. This, for you, senators, must be the guidepost on whether or not to amend this legislation. I ask that you don’t. But if amend you must, please keep in the reasonable foreseeability of death before there is MAID to be allowed.

The United Nations, senators, we would submit, has found Bill C-7 to be irretrievably lost. For several weeks after my accident, I lay in bed close to death more times than I care to imagine. Whilst faced with the impending reality that I would not move my body the way I had just a little while ago, I found quite paradoxically — [Technical difficulties]

What I found immediately after my accident is that I had lost my sense of liberty and my mobility, and I knew that I would not be able to move the same again. I had lost autonomy. Just like so many people facing the prospects of MAID, instead I found that I wanted to embrace life. I found that I wanted to find the rigours and joys of life, but I also had profound love and profound supports. I do know that several of my spinal-cord-injured peers did not have the same supports in their lives.

I know that since the Criminal Code was amended just a few years ago, some of my disabled peers, my spinal-cord-injured peers, have chosen MAID. Their dreams were deferred by the steely tip of a lethal injection rather than embraced by and within the slings and arrows of outrageous fortune that bring forth a brighter day. Their central point of suffering arose from failed social supports, not the implication of disability or a disabling condition. That failure is squarely in the hands of government.

Therefore, I would submit to you that the wrong question is being contemplated. We should not introduce the subjective elements of what it is to suffer intolerably, but instead, there must be an objective assessment of whether or not the person with a disability has enough supports in place in order to live an independent lifestyle.

I dare anyone, senators, to suggest MAID to any other equality-seeking group in Canada and not expect cries of outrage and bigotry.

As the expert committee also indicated last Monday, we all accept that it could never be a well-reasoned decision for a person belonging to any other protected group — be it a racial, gender or sexual minority — to end their life because they experience suffering on account of their status.

We, the Canadians with disabilities, change our physique but we do not suffer. We, as a community, do not go gently into that good night. We simply move across the earth’s crust in a different way. Give us the tools to do so.

In addition to the inherent bias imbued in the proposed legislation, implying or pre-supposing that to be disabled is to suffer unbearably, the other great defence created by removing the reasonably foreseeable death clause is that it is empirically wrong. There are not concerns to trigger the life rights of individuals because the current regime has made access to physician-assisted suicide much easier, and it increases every year.

By radically loosening the safeguards, as is imposed, it opens the door to abuse of those safeguards and implicitly promotes rather than permits MAID. It normalizes premature death due to a condition called disability and does not impose the legal standard of reasonable foreseeability of death. It is critically important to identify that distinction. Failing to do so would be a failure to guarantee full and equal citizenship to over 6 million Canadians who are living with disabilities. It would tell everyone with a disability that your life is expendable, and that would be an unintended consequence of the greatest proportion.

I thank you, Madam Chair.

The Chair: Thank you, Mr. Shannon. Now we will go to Dr. Naheed Dosani.

Dr. Naheed Dosani, Palliative Care Physician and Health Justice Activist, as an individual: Hi, everyone. Thank you very much for having me. My name is Dr. Naheed Dosani, and I am a palliative care physician who provides palliative care for people who experience structural vulnerabilities like homelessness, poverty and systemic racism. I’m the founder of the world’s first mobile palliative care program focused on meeting the needs of people experiencing homelessness, the PEACH program, Palliative Education and Care for the Homeless in Toronto, Ontario.

Our team, comprised of a group of compassionate health workers, cares for between 110 and 120 people at any given time, whether they live on the street, under a bridge or in a shelter, through trauma-informed care, harm reduction and a human rights approach so that everyone has an opportunity to have equitable access to palliative care.

I’m also the founder of Toronto’s first hospice for people experiencing homelessness, serve as medical director for the region of Peel’s COVID-19 homeless response and —

The Chair: Dr. Dosani, can you just slow down, please? It’s very hard for the interpreters.

Dr. Dosani: No problem. And hold faculty appointments in the division of palliative care at both the University of Toronto and McMaster University.

Given my understanding that Bill C-7 will likely pass in one form or another, today I’m here to convince you of three things. One, that palliative care is not equally accessed by all people across Canada. Two, that people who experience structural vulnerabilities, like poverty, homelessness and racism, face even more barriers to accessing palliative care. And three, that there are circumstances where people choose to pursue MAID because the social conditions around them create the conditions for them to do so. We must do better.

Part one, palliative care is an approach that improves the quality of life of people and their caregivers facing life-limiting illness. In 2016, the Canadian Society of Palliative Care Physicians released a report entitled How to improve palliative care in Canada. The report highlighted major gaps in palliative care in Canada but also made six significant recommendations to address this. In 2018, Health Canada released the Framework on Palliative Care in Canada, but aside from this, few, if any, of these recommendations have been put into place in any meaningful way. They need to be.

Part two, what gets talked about even less, are the even larger barriers that exist to palliative care access for those who experience marginalization. I’ve provided street-based palliative care for over seven years to communities that face these barriers. I have seen this with my own eyes. In 2014, I had the opportunity to join a research team out of the University of Victoria to answer the question: What are the barriers that people on the margins of society experience in accessing palliative care?

The study, led by my mentor and colleague Dr. Kelli Stajduhar, and the report that followed, is called Too Little, Too Late and it tells a damning story. Through 300 hours of observational research, our team followed 25 vicariously housed people, their support persons and service providers. What did we find? That people who live on the margins have difficulty accessing palliative care. Why? Because the need to survive trumps discussions about palliative care when you live on the street. Because death is so common on the streets. Because early identification of palliative care needs for people on the streets is challenging. Because our systems operate in silos for housing, food, health care and income, and crosstalk across those silos is rare. Because there are often barriers for home care organizations to provide care in non-traditional home environments. And because there’s so much death on the streets, that it’s created a world of grief and vicarious trauma.

In summary, to make palliative care more equitably accessed, we must build up the systems that support people who experience marginalization.

Part three, given that today’s testimony is focused on Bill C-7 and MAID, let’s talk about MAID. I work in the trenches, on the front lines of the homelessness crisis, the opioid overdose death crisis and now the COVID-19 pandemic crisis. I work in a world where I can successfully arrange for MAID in two weeks in an organized and efficient fashion, but also a world where it takes years to get the people I care for into housing, months to get people income supports and weeks to get them mental health and harm reduction support, if we’re lucky. While I appreciate that these processes are not mutually exclusive and do not necessarily come from the same pool of resources, I find this morally distressing.

I want to be clear. I’ve seen people who have pursued MAID because they experience marginalization. Take Bob — not his real name, of course — a man in his 50s with multiple sclerosis and complex wounds who was referred to our palliative care service for pain management. Despite optimizing his pain and providing good wound care, he pursued MAID. Why? Because his progressive disease and the complications of it led to an alcohol-use disorder, which led to him losing housing, which led to him losing his family and ultimately being alone.

On the other hand, I’ve also witnessed how treating the social determinants of health can make a difference such that it can change the course of whether or not someone pursues MAID. Take Mary — not her real name — a woman in her 30s with untreated HIV. She was on the brink of AIDS. She did not want to take her HIV medications because she was on the streets, had a substance-use disorder and no health care team. She wanted to die through MAID. But after addressing her emotional and physical pain, helping her with housing, income and wraparound support, she changed her mind. She didn’t want to die via MAID. She wanted to live because she had a better quality of life.

In the discourse on MAID, I do not see the stories of Bob and Mary reflected. I’m told that based on current research, stories like Bob and Mary’s are not common. How do we really know? Have we really conducted enough research to know about the experiences of those who live on the margins? Further to this, I worry that Bill C-7 will have a disproportionate impact on working class, disabled people, people experiencing homelessness, poverty and marginalization, people who can’t afford their basic needs like food and shelter and medications, and that without investing in any of the structures that create these situations, MAID may not be a fair choice for everyone. With 35,000 Canadians experiencing homelessness each night, I expect it takes the same energy that’s been put into passing MAID into our world and country — that we’ll put that same energy into housing, gearing up harm reduction, implement basic income and Pharmacare. On the one hand, if you’re making it easier for people to get MAID, you also have an obligation to ensure that people are not forced into vulnerable situations where they feel that they need to access MAID to escape these vulnerable situations.

Thank you very much for hearing me out today.

The Chair: Thank you very much, Dr. Dosani. We will now go to Danielle Chalifoux, our advocate.

[Translation]

Danielle Chalifoux, Lawyer in health law, Institut de planification des soins du Québec: Ladies and gentlemen, senators, thank you for inviting me to present the position of the Institut de planification des soins du Québec.

The institute’s mission is to help and support individuals, groups and organizations with care planning, and also to defend the rights of those who use the Quebec health system.

Personally, I’m a lawyer who has been a member of the bar since 1985 and I began to take an interest in medical assistance in dying in the early 2000s. I should add that I take pride in having studied nursing and practised palliative care for a number of years, which gave me some field experience.

I will only address a few points because of the short amount of time available. To begin with, at the institute, our view is that the federal government handled the matter badly after the Truchon and Gladu decisions. Why did they not appeal the decision, since it applied only in Quebec?

The situation in Quebec is different than in the other provinces. At the moment in Quebec, it’s possible, through a constitutional exemption application, for a person whose death is not reasonably foreseeable to obtain medical assistance in dying if that person meets the other conditions.

There are not many applications for a constitutional exemption in Quebec, but they do exist. To my knowledge, they were all accepted, at least those that have been documented and that I’ve been able to learn about. That’s the situation in Quebec. In the other provinces, the matter is still under the jurisdiction of Bill C-14; what we have, then, is a double standard.

With the additional extensions of the suspension period, it has been this way now for a year and a half, and close to the moment when it would have to have been appealed. The other advantage that a government appeal would have provided was the real possibility of setting aside the Truchon and Gladu decisions. For example, there was the case of Ms. Julia Lamb, a young woman with a serious irremediable degenerative disease who was not really in a condition that could be described as one of reasonably foreseeable natural death, and yet who was considered eligible as a result of a broad and liberal application of the concept. In the end, she withdrew her case because she had succeeded in getting what she wanted. So this proves that Truchon and Gladu were perhaps simply a matter of interpretation rather than constitutionality. I put a question mark on this because we do not have the benefit of an appeal, and we’ll never know.

A further benefit would have been that the time required to reach the Supreme Court would have allowed for a cooling-off period to think about things more carefully, and a re-examination that could have come up with a more complete act that could address mental illness and possibly also advance consent for medical assistance in dying.

Some have recommended a reference to the Supreme Court. Would this be a reference pertaining to Bill C-14, Bill C-7 or both? There would certainly be advantages to a reference. As Professor Beaulac said earlier, it would be better to thoroughly settle the matter of Bill C-14 because Bill C-7 is a response to Bill C-14, and takes it for granted that Bill C-14 is unconstitutional.

So if there were to be a reference solely on Bill C-7, it would mainly address exclusion on grounds of mental illness. With respect, based on a strictly legal analysis, we find this exclusion somewhat problematic. As for straightforwardly excluding mental illness in the application of Bill C-7, the Institut de planification des soins du Québec considers this exclusion on grounds of mental illness to be unconstitutional because it does not comply with Carter.

I could also, if you’re interested, discuss a very interesting Alberta Court of Appeal decision on this matter. Excluding mental illness also violates section 1 of the Charter. A reading of the criteria in Oakes and some subsequent cases makes this clear.

If we ask whether outright exclusion constitutes a minimal infringement of human rights, then with respect, I believe the answer is obvious.

So we don’t really understand the federal government’s attitude to this. How can it serve the people of Canada by adopting a provision that’s so clearly unconstitutional, and that deprives an entire category of persons with a mental illness from the right to medical assistance in dying, without any apparent justification under applicable law?

We are necessarily headed towards new challenges and the process will have to start over again. Once again we ask whether the Senate should recommend the inclusion of mental illness in Bill C-7? It’s certainly possible, but perhaps not within the allotted time period, because the act has to be passed on or before February 26.

Moreover, if the deadline is not met and the Quebec Superior Court refuses to allow another extension, which we believe to be not only possible, but perhaps even probable, it would not be a disaster for Quebec. That’s because, first of all, it would no longer be required to apply for constitutional exemptions. And secondly, Quebec has its own end-of-life care act and can amend it if it feels the need.

For example, the Collège des médecins could develop practical guidelines and directives, and government authorities could also issue a notice guaranteeing that doctors who provide MAID within these directives would not be prosecuted.

As for the other Canadian provinces and territories, unfortunately, or fortunately, depending on the point of view, Bill C-14 would continue to apply. Furthermore, we would be in a position to monitor the development of the concept, which might take on a broader and more liberal aspect.

We also wondered, if the Senate were not to propose such an amendment, whether a sunset clause might be appropriate? The answer is yes, of course, but it would be a lesser evil, and according to us, the time period should not exceed one year.

If the Senate were to propose the inclusion of mental illnesses in Bill C-7, what safeguards would be appropriate? I refer you to the report of the Association des médecins psychiatres du Québec, Accès à l’aide médicale à mourir pour les personnes atteintes de troubles mentaux, which was studied in considerable depth at a national forum held recently at the request of the Government of Quebec, about medical assistance in dying and mental illness. I believe that it was Dr. Mona Gupta who explained the guidelines in this report to you.

I’d like to share a number of the findings in this report with you because we, at the institute, believe they could suggest highly appropriate safeguards. To begin with, the findings are that it is essential: to conduct a substantial and specific assessment of mental disorders, and in particular an assessment of the decision-making capacity of people with these disorders; to properly formulate criteria for the incurable and irreversible nature of the illness; to give consideration to its progression over time and also to have found that numerous attempts at treatment had been carried out and failed, in which instance it would require a very lengthy study that could take years. The measures envisaged by the association also include a dynamic relationship between the patient, the family and the care team, as well as the need to improve care and access to it in a timely manner. This is applicable to Quebec, and I would imagine it could be applicable elsewhere in Canada and the territories.

These then are the main recommendations made by our institute concerning Bill C-7, and also on approaches that could be taken to come up with an act that is compatible with the Canadian Charter of Rights and Freedoms and Supreme Court case law.

Thank you, and I would be glad to answer your questions.

The Chair: Thank you.

[English]

Jonathan Marchand, Chair, Coop ASSIST — Quebec Cooperative for Independent Living: I am from Quebec. I am the senior network engineer in computer science, and I am an activist and an advocate for people with disabilities. I have a form of muscular dystrophy, and I have had a disability all my life. I am appearing before you from what I consider my medical prison cell, a long-term care facility in Quebec.

I oppose Bill C-7 because death without dignity doesn’t exist without life with dignity.

I’m 44 years old, and just like Jean Truchon, I’m forced to live here because there is no proper support to live in the community.

For 10 years now, I’ve been fighting to get out of here and regain my freedom and open a path to community living for everyone because living in the community is a human right.

Before being trapped into the institutional system, I had a good life. I was successful.

In 2010, following a severe pneumonia, I ended up in intensive care. I was given an emergency tracheotomy to help me breathe with the assistance of a ventilator. It was explained to me that now someone had to be with me 24 hours a day in case I needed assistance. Unable to speak, several doctors pressured me to accept euthanasia, “comfort care” as they called it, to end my life. I never asked for this.

I spent the next few weeks thinking and crying my eyes out. My life is really over? The thought had never crossed my mind. I was getting better. But losing control over my life, being completely dependent on others and becoming a burden to my loved ones was unbearable for me.

There are no support services to live outside of hospitals. I had to choose between killing myself or living in a hospital for the rest of my life. I was never offered the choice to continue my life at home with the required assistance. I wasn’t ready to abandon my partner, my family and my friends. I signalled my refusal to be euthanized.

I was prepared to do anything to get out of this medical hell, but just like Jean Truchon, I was denied the home care support that I needed. I complained to the highest instances. I was told that it was a political issue as living in the community with the necessary support is not a right in Canada. After two and a half years in the hospital, I ended up in a long-term care facility.

This place is a medical prison. You no longer have choice and control over your life. Your love life? It’s over. You can’t live with your partner. Your private life? Forget it. A record is kept on your every move. You are now the property of the government. Now it is managers, civil servants, nurses and others who will decide how you will live. You are too independent for their taste? They will break you. You have to submit to their rules. You have to be a good, kind, obedient, grateful little cripple.

I gave up and sank into depression. I was ashamed to live in this ghetto. Without humanity and freedom, life no longer has any meaning. I regretted having refused euthanasia. I simply wanted to live with my partner, work and have a normal social life. I wanted to die. I was Jean Truchon.

I discovered that about 70% of people with severe disabilities live in institutions in Quebec. The others cling to living at home, but often find themselves also isolated. Many have committed suicide or have accepted euthanasia to avoid suffering my fate.

My disability is not the cause of my suffering, but rather the lack of adequate support, accessibility, and the discrimination I endure every day. As a last resort, I occupied a space in a cage in front of the National Assembly in Quebec for five days and five nights to protest my incarceration and to implement community living solutions. Why is it so hard to be seen and heard when we want to live?

Suicide prevention is offered to people without disabilities, but I deserve assisted suicide? I’ve been told before: If you’re not satisfied with what you’re being offered, why not accept euthanasia? My life is worth living. I want to be free. I don’t trust the government, politicians, civil servants and doctors to tell me what I can and cannot do in my life or how my death should unfold.

I am an unlikely survivor. Senators, you must end this bill or remove the special second track. There can be no death with dignity and freedom of choice as long as we are forced to live in institutions, made to feel like burdens, while we face discrimination and systemic violence at all levels. Thank you.

The Chair: Thank you very much. Relating what you had to, it takes a lot of courage. Thank you very much.

Sarah Jama, Lead Organizer, Disability Justice Network of Ontario: Thank you for having me speak to you today. My name is Sarah Jama and I’m a lead organizer with the Disability Justice Network of Ontario. DJNO aims to build a just and accessible Ontario where people with disabilities have the personal and political agency to thrive and foster community and build the power, capacity and skills needed to hold people, communities and institutions responsible for the spaces they create.

I’m also an organizer with Black Lives Matter and do a lot of anti-Black racism work in my city. I note this because part of my everyday work is to keep Black alive in a world that consistently causes harm due to the colour of our skin.

I have cerebral palsy and from the beginning of my life, assisted death was actually an option. As my mom tells it, the doctors tried to get her to terminate me in her first trimester because they thought I would be a vegetable. New to this country she wasn’t sure how to push back except to express her rage.

And she fought to keep me. She was bedridden until her second trimester, and then I was born at six months. My heart stopped, I was revived and I remained on oxygen in an incubator for the first three months of my life. According to a lung specialist, I likely have reduced lung capacity, and I don’t really tell people this, but on some days, breathing hurts.

I think about how the doctors wanted me dead and how they’re still in the medical profession — how these same doctors would probably provide me MAID if the opportunity arose, because they saw my life as not having value.

There’s no real way to protect against systemic racism or systemic ableism in our medical field. I’m thinking of Joyce Echaquan, an Indigenous woman who recorded racist commentary from negligent nurses before she died.

In the same way that police have the ability to adjudicate police when it comes to wrongdoing, doctors have the ability to adjudicate doctors. In the same way, there is a silent brotherhood in policing, there is a silent brotherhood of medical professionals who, at times, can protect their own when harm is caused.

I also think about the period during this pandemic. Across this country, disabled people are dying in long-term-care homes. This institutionalization and mass death would not be possible, if home care and personal support workers were funded adequately, if housing options were both affordable and accessible, and if we did not live in a society that devalues people outside of the workforce. Across this country, disabled people are living with government-sanctioned poverty rates on social assistance and without properly funded medication or therapy. What does choice truly look like under these conditions? A choice that, for some, would extinguish the choice of others is unjust.

There is no way to ensure that people like Chris Gladders from Hamilton, Ontario, who chose to die enduring terrible conditions in a long-term-care home where he was covered with urine and feces actually wanted to die. Even Jean Truchon accessed MAID, saying it was in part because of pandemic isolation in a long-term care home.

We live in a country where Black and Indigenous people — Eishia Hudson, D’Andre Campbell, Andrew Loku, Jermaine Carby — people across this country are killed after calling for mental health supports. They claim to kill us in order to prevent us from killing ourselves.

At the same time, we are debating today over amending the Criminal Code at a speed that is unprecedented in order to allow Black and Indigenous disabled people the choice to kill themselves. These priorities do not line up with the realities of classism, racism and ableism in our country. Black people are disproportionately impacted by COVID and will face long-term impacts of disability as an outcome. Indigenous youth face the highest suicide rates across this country.

To allow easier access to MAID before our government has reckoned with these circumstances is a mistake.

Senators, if you understand the nature and problems with systemic ableism in this country, you understand that to be disabled and poor in Canada is to entertain suicidality every day.

The problem isn’t medical assistance in dying. I’m not anti‑MAID; I am against your decision to amend the Criminal Code without listening to Black, Indigenous and working-class people across the country. I’m against provinces pushing for triage protocols and revoking consent acts like what we’re seeing in Ontario, taking notes from this bill, which tells us that disabled lives are to be devalued. I’m ashamed at your sheer lack of effort on the part of my government to truly hear from Black people, working-class people and from Indigenous people on this life-and-death matter. I am ashamed of the speed this bill has moved forward while disabled people are in despair across this country.

Bill C-7 is ableist and anti-Black. It is anti-working class, and earlier today United Nations experts expressed alarm at the growing trend to enact legislation enabling MAID based on disability. In their written statement on Monday, they specifically said that it’s paramount that voices of people with disabilities of all ages and backgrounds are heard when drafting policies and regulations that affect their rights.

As such, we’re asking you to vote Bill C-7 down. I’m asking you not to encode into law the injustices I have laid out that will clearly harm Black and Indigenous people most. Please vote against this. A new generation of disabled Canadians are paying attention, and we will mobilize if necessary, including pushing against this in court if Bill C-7 is to pass.

Thank you.

The Chair: Ms. Jama, thank you for coming here. Thank you for taking the time. I assure you, we have heard you.

We will now go to Professor Heidi Janz.

Heidi Janz, Chair, Ending-of-Life Ethics Committee, Council of Canadians with Disabilities: Honourable senators, thank you for the opportunity to speak to you today.

Ableism is discrimination against people with disabilities, based on the belief that typical abilities are superior. Like racism and sexism, ableism classifies entire groups of people as less than and perpetuates harmful stereotypes. Ableism remains, in the words of Canadian disability scholar Gregor Wolbring, “. . . one of the most societal entrenched and accepted isms.”

The plan to expand MAID legislation is an example of ableism. Research indicates that people with disabilities frequently encounter discrimination in health care settings, even in ordinary times. Studies have consistently shown that health care professionals substantially underestimate the quality of life of people with disabilities. Erroneous judgments about the quality of life experienced by people with disabilities can result in their treatment options being either limited or altogether eliminated. At the heart of such decisions is what disability scholar, Joel Michael Reynolds, has termed “the ableist conflation” of disability, suffering and death.

Running contrary to the ubiquitous public health mantra since the pandemic, “we’re all in this together,” has been the development of critical care triage protocols that list the pre‑existence of a disability as an exclusion criterion for critical care, if rationing becomes necessary. Hence, when I became critically ill with pneumonia in November, I was forced to go into ER alone and terrified. Over the years, I’d heard numerous accounts from friends and colleagues with disabilities who have had DNR orders arbitrarily placed on their charts without their knowledge and who consequently needed family and friends to monitor their charts for the appearance of unauthorized DNR orders and to advocate for their removal.

Others recounted how physicians repeatedly asked whether they would want interventions such as receiving supplemental oxygen through a nasal cannula, treatments that would generally be considered routine for non-disabled people, and then being asked again, “Are you sure?” It was with all these things percolating in my mind that I pre-emptively responded to the ER doctor’s inquiry about goals of care with all the clarity and force that my 82% oxygen-saturated lungs could muster, “R1.”

I soon became accustomed to hearing myself described in the following terms at every shift change: “Complicated pneumonia, R1.” But then came the day that I went for a CT scan. Two nurses in radiology were looking through my chart, when one looked at the other and exclaimed, incredulously, “She’s an R1?” and shook her head. Any ostensible status I have as an ethics professor or a disability rights advocate was instantly stripped away, and I became a presumptively non-verbal spastic quadriplegic, who already had a feeding tube, and now had complicated pneumonia. It was clear from this nurse’s reaction to my goals of care that she could not imagine my life to be worth living.

This is what medical ableism looks and feels like.

I had a friend with disabilities who, after being forced to live in a nursing home and hearing, “She is an R1?” one too many times changed her goals of care, agreed to forgo what would otherwise have been routine treatment with oxygen and died.

This is what medical ableism, internalized, does.

People with disabilities are at a higher risk of suicide due to systemic and internalized ableism, yet they face substantial barriers when trying to access suicide prevention services. Medical professionals overlook typical sources of stress. Problems arising from relationship breakdowns, depression and isolation are wrongly attributed to disability.

News reports indicate that some people with disabilities living in poverty are being driven to end their lives through MAID because they lack the means to survive. Physicians report that patients with disabilities are requesting MAID upon learning that the wait time for accessible housing with the supports they require is ten years or more. In a truly just and progressive society, suicide prevention measures should be applied equally to all people.

Given the prevalence of ableism in Canada, the Council of Canadians with Disabilities urges that the following amendments be made to Bill C-7 in hopes of limiting the bill’s capacity to cause death through ableism:

One, receipt of adequate housing, income support, palliative care and home-based services must be prerequisite eligibility requirements for MAID. The onus for providing these supports at the level required must fall on governments; a person with disabilities should never bear the burden of trying to lobby for adequate supports.

Two, refer to the Supreme Court of Canada by way of constitutional reference Bill C-14’s existing protections limiting MAID to cases where a person’s natural death is reasonably foreseeable.

Three, any changes to Canada’s MAID law must meaningfully respond to the 2019 End of Mission Statement of the United Nations Special Rapporteur on the rights of persons with disabilities, wherein Ms. Catalina Devandas-Aguilar cites a lack of protocol to “. . . demonstrate that persons with disabilities have been provided with viable alternatives when eligible for assistive dying,” and notes that she received:

. . . worrisome claims about persons with disabilities in institutions being pressured to seek medical assistance in dying, and practitioners not formally reporting cases involving persons with disabilities.

Four, Canada’s amended MAID law should follow the judicial directive of the SCC in Carter, which required “ . . . a carefully-designed system . . .” that imposes stringent limits that are scrupulously monitored and enforced.

Five, remove Bill C-7’s provision allowing a disabled person’s health care or personal care provider to be an eligible witness to that person’s request for MAID.

Six, retain Bill C-14’s mandatory 10-day waiting period requirement, as it currently stands, and the requirement for independent verification of all MAID requests by two witnesses.

Seven, in response to the prevalence of medical ableism, add language to Bill C-7 that will ensure that all discussions surrounding MAID are patient-led and not prematurely initiated by the physician.

Eight, remove Bill C-7’s provisions waiving Bill C-14’s important and necessary final consent requirements.

Proponents of Bill C-7 claim that the expansion of eligibility and the dismantling of safeguards for MAID that it prescribes will enhance the autonomy and dignity of people with disabilities, but in reality, Bill C-7 will enshrine a lethal form of ableism into Canadian law by choosing to focus policy efforts on facilitating the death of disabled people rather than ensuring the provision of community-based supports to assist people with disabilities to live.

The role of the Senate is to provide sober second thought for legislation that will impact our future as a country. The Council of Canadians with Disabilities, along with the entire disability-rights community in Canada, is therefore pleading with you. Fulfill your duty: Do not pass Bill C-7 in its current form. Send it back to the government with amendments that respond to the reality of systemic ableism. You must ensure that MAID does not become medical-ableism-instigated death. Thank you for your attention.

The Chair: Thank you very much, Professor Janz, for sharing your thoughts and remarks with us. We all appreciate it.

[Translation]

Senator Petitclerc: I’d like to thank each and every one of our witnesses today; you’ve truly shed important light on the bill that we are examining.

My question is for Ms. Chalifoux, and if there is enough time, I would perhaps like to put the same question to someone else.

Ms. Chalifoux, you’re well aware of the background to this bill. We’ve had people like Nicole Gladu, Jean Truchon and others ask that their right to self-determination be respected. We also have the Carter decision and Justice Baudouin’s decision. On the other hand, even today, we’re hearing concerns from some groups and individuals. It’s a passionate discussion. We have a bill that is asking us to respect the rights of individuals. In Bill C-7, we have safeguards which, in my humble opinion, are balanced and appropriate, even though some people have deemed them too restrictive, and others not restrictive enough. I’d like to hear what you have to say, if you’re willing to do so, of course, about the safeguards for people whose death is not reasonably foreseeable.

Ms. Chalifoux: Thanks for the question. I think you’re referring to the distinction between the waiting period for persons whose natural death is reasonably foreseeable, and persons for whom natural death is not reasonably foreseeable.

We believe that an additional waiting period for persons whose death is not reasonably foreseeable, which would show evidence of a carefully considered decision, would be acceptable under the Charter, although 90 days strikes us as a bit long. We would prefer to see it reduced — as I think is the case in Belgium — to a waiting period of one month rather than three months. That’s our position. We don’t think it falls outside the scope of law and it could even be included in the criteria of the famous Oakes case, where, as a criterion, it has a minimal impact on the act. We think that it would be justified.

Then, there is the final consent waiver. I don’t know whether you were thinking of that. If someone loses their capacity between the time they made the application and the time when medical assistance in dying was to be administered, the person loses that right. It’s a little like the situation experienced by Ms. Audrey Parker. She spoke about it publicly. She had cancer, was eligible for medical assistance in dying, but requested it early because she was concerned about losing capacity, thus losing her eligibility for medical assistance in dying. So we agree with this final consent waiver. In Quebec, a group of experts, including myself, studied the whole question of medical assistance in dying in circumstances of incapacity. The first recommendation was to remove the condition of continued capacity to the very end for persons acknowledged to be eligible and who have made an application.

We largely agree with these conclusions with respect to these two considerations in Bill C-7. I hope this answers your question.

Senator Carignan: My question is also for Ms. Chalifoux. If we amend Bill C-7 by adding something like a sunset clause to require a one-year waiting period before medical assistance in dying could be made available to persons with a mental illness, should we not also include the concept of advance consent in the bill?

Ms. Chalifoux: I’m glad you asked, senator, because advance consent is my baby. It’s something I’ve been studying and promoting at the institute for several years now. The problem is that enough time needs to be allowed to deal with problems that the legislator or the government have promised to address in the course of the required re-examination, which I don’t believe has really begun, and which is about advance consent for medical assistance in dying and mental illnesses. In Quebec, our group of experts submitted a report to the government that provided a complete system for dealing with advance consent requests. We also studied all aspects of these requests. This could very well get Parliament moving. I hope that answers your question.

Senator Carignan: Yes. Thank you.

[English]

Senator Batters: Thank you very much. First of all, I want to say to all the witnesses that I wish I had more time, to give you more time to speak today, because there were so many powerful presentations. Thank you very much for being here and relaying those to us.

My first question is for Mr. Shannon. Mr. Shannon, in an op‑ed you wrote on December 2, you explained that if you had been given the option of MAID by a medical professional in the first years after your injury, you may not be here with us today. Given what a profound and meaningful life you have led, the statement is quite heartbreaking, and I’m wondering if you could elaborate on that.

Also, do you believe that suicidal ideation can wane for those living with a disability?

Do you believe there are any safeguards present in Bill C-7 that would protect against unnecessary death?

Mr. Shannon: Thank you very much for the question. Indeed, suicidal ideation does wane. I would say that there may be periods of the blues. However, in study after study across North America, it’s well researched that persons with disabilities do adjust to their disability.

I’m very happy you asked that question, because I did have the good fortune of having an adjustment period, the good fortune of having love and support in my life, the good fortune of being an 18-year-old who was able to access housing, go to university and, in other words, have the opportunity for the very social supports that we have heard people crying for today. Literally, it is a cry for supports. You can’t divorce the fact that when those supports do not exist, oppression begins. To say that there’s autonomy or that MAID is an autonomous decision is completely divorced from the reality of what it is to have a disability.

Yes, we have dreams. All individuals in the disability community have dreams. We speak in Canada of the need for diversity, of the need not to extinguish potential but to enhance it. Unfortunately, with this legislation, that says your dreams may be extinguished; your life is not worthy of the fulfillment that is equal to everyone else. Ultimately, without the safeguard that there must be a foreseeable death, it opens the door to far too much abuse.

Senator Batters: I want to ask Ms. Jama my second question. Ms. Jama, thank you very much for your powerful opening statement and your presence here today.

As a community organizer and disability justice advocate, you clearly told us today that disability groups have not been sufficiently consulted with during the parliamentary process of Bill C-7. I’m wondering if you could please tell us a bit more about your views and about how disability groups have not been heard in a meaningful way. Also, could you please tell us about the lack of consultation from people of colour on this crucial issue? Thank you very much for challenging parliamentarians and the government to do better on this critical issue.

Ms. Jama: I think it’s quite obvious that there have only been a handful of Black and racialized people to speak both in Parliament and in front of the Senate on this issue. I also think it’s quite obvious that there has been a lack of diversity around people’s income and class. A lot of the speakers that you’ve heard from, from Dying With Dignity, have been people of an upper-middle-class background and have lobbying support, support with networks, and family and friends to support pushing this bill. You’ve not done enough work to go talk with people who are living in poverty or to people who are living on social assistance. The two views are quite different in terms of what this means, in terms of the medical racism and medical ableism that these groups face.

Senator Batters: Thank you, Ms. Jama. I appreciate it.

The Chair: Ms. Jama, I also have a question for you. You have spoken about a lack of representation. I couldn’t agree more with you, but I would like to hear from you, being a lead organizer at the Disability Justice Network of Ontario and an active member of the Black activist community, do you think that if there were a collection of race-based data that would assist in your work, would you be able to access more services?

Ms. Jama: Yes. Thank you for the question. With regard to race-based data, I’m going to be honest; we’ve talked about race‑based data collection for years. We know that Black people are being disproportionally impacted by COVID-19 right now. The data that we have is not changing the outcome of this for our communities. It’s not enough to continuously talk about data collection while pushing forward legislation that will cause harm to certain communities.

Yes, data is important, but oftentimes it’s used in these spaces to stop the work and to listen to what the community is saying. I don’t need the data. I know, anecdotally, and Dr. Dosani knows; he spoke to that as well. Almost every other panellist who spoke against Bill C-7 understands the ramifications. We don’t need the data to be clear on what’s about to happen and what’s about to unfold if Bill C-7 passes.

The Chair: Thank you very much, Ms. Jama.

My next question is to you, Dr. Dosani. You work with the homeless and the most vulnerable. Also, you are, as you call yourself, a health activist. As an advocate for the most vulnerable, would it help if there were better race-based analysis to get better services within the community and also for the community to be heard?

Dr. Dosani: I thank you for the question. At the end of the day, we have to be conscious when we talk about evidence, particularly around medical assistance in dying and the research we’ve done. I’m not convinced that we’ve collected data that describes the experience of those who experience poverty, particularly those who deal with the long-standing effects of systemic racism in our communities. The Black, South Asian and Indigenous communities I serve, those who are struggling the most in this COVID-19 pandemic — I live in a city where 83% of COVID-19 cases have happened in racialized communities. It goes without saying that the collection of data across the board could potentially make a difference. But, as Ms. Jama said earlier, I do concur that we’ve been collecting race-based data in many areas in social services and health care for years. What have we done about it? What are we going to do about it? What changes are we going to inspire? Even in the first round of data that we received around medical assistance in dying, I’m told that stories like I told of Bob and Mary are not present and don’t really bubble up to the top. The truth is, how do we really know that? Until we take an equity-inspired lens that includes the collection of race-based data, we won’t really know the answer.

An equity-in-all approach is needed for all conversations such as this one. Yes, race-based data is important, but we can’t stop there.

The Chair: Dr. Dosani, I want to stop you. My time will run out.

I have been really upset while preparing for this hearing. We got gender-based analysis plus from the minister, which means he assured me that they had done race-based analysis, and when we received the analysis, there was nothing about race. I hope I am not misquoting him. I understood that it’s hard to collect the data. Is that correct? Is it a challenge to collect race data?

Dr. Dosani: That’s a great question. My understanding, in health care and in health care administration, is that there are many points of entry and many points for data collection where one can actually collect race-based data. We have numerous examples of this process in play, from our hospitals to our primary care services. We’ve been able to slice and dice race‑based data through the COVID-19 pandemic. While I don’t understand all the implications of what you were told, Senator Jaffer, I do want to say that there are many examples of race‑based data collection and it can work and can make a difference.

The Chair: Thank you, Dr. Dosani.

Senator Plett: Let me start by thanking all of the witnesses for the powerful message that you have sent us today, each and every one of you. I thank you for that.

I have two questions, one for Mr. Marchand and one for Ms. Janz. They are related questions.

During our pre-study, Mr. Marchand, we heard heartbreaking testimony from Roger Foley and Taylor Hart, both of whom encountered health care workers who they felt suggested to them that death was their best option. Mr. Foley taped one such occurrence of being pressured to receive assisted suicide. It was publicized through mainstream media. We understand this type of coercion can be subtle, but it is extremely impactful and, sadly, all too common, including your own testimony today.

These cases, of course, occurred under the existing assisted suicide regime. In your view, does Bill C-7 offer any protection against subtle coercion? If not, do you believe the bill before us could be improved to protect the vulnerable from this type of coercion?

Mr. Marchand: Thank you for this question. Something that’s very important to understand is that often for medical professionals, especially in intensive care units, if we cannot be cured, we’re seen as disposable. If you cannot cure me, then it’s a waste of resources, a waste of time and what you need to offer is end-of-life options. That’s often how we’re seen. That’s my experience dealing with many doctors, to deal with that kind of attitude. Often you have no idea until the time comes for the doctor to really help you out and they don’t go and help you out.

I was denied many care options from medical professionals. It took me years to sort that out and find doctors who were willing to help me out. There’s this culture in the medical field. Now, is there a way around that? I don’t think so. It’s a cultural issue, and that’s why I want to get out of the medical system. Even now in the medical long-term care facilities I am treated this way.

I’ve got, now, good doctors around me, but often the professionals see me as disposable, and there’s a culture with this tendency that underpins all that.

I teach the only way to safeguard the lives of people like me, Carter and others is to remove this special circumstance that’s been proposed. The foreseeable death needs to remain and needs to be the only way you can access medical assistance in dying —

Senator Plett: Thank you. I appreciate that.

Professor Janz, it’s a related question. Thank you for sharing the Council of Canadians with Disabilities’ suggested amendments.

One of your recommendations is to add language to Bill C-7 that will ensure that all discussions about MAID are patient-led and not prematurely initiated by the physician. This concept is something that was raised numerous times in the pre-study, again today and even had some support when I asked Minister Qualtrough about it.

Could you explain more about why you think that the discussions about assisted suicide must be patient led? How would this work to bring dignity and autonomy to persons with disabilities?

Ms. Janz: Thank you for the question. Basically, the simple answer is because of medical ableism and the fact that it’s so prevalent. The discussions about MAID must be initiated by the patient because, already, there are mountains of evidence where doctors have brought up life termination by withholding treatment, by taking people off life support, all on the assumption that a life with disabilities is not worth living.

Unless there is some protection, where it is the person with disabilities bringing forward the discussion of MAID, the potential for wrongful death is going to be huge.

Senator Plett: Thank you very much.

Senator Pate: Thank you to all of the witnesses.

We’ve heard from other witnesses, particularly from disability groups, that they have not been opposed in principle to medical assistance in dying but have particular concerns, as you have each raised, around the issue of the lack of availability of supports. We certainly heard that from witnesses in the pre-study around the lack of availability of income supports, health care supports, housing supports, and you’ve all identified that.

I have two questions, one for Mr. Shannon and then the same question for Mr. Marchand, Ms. Jama — and Dr. Dosani, I think you have ample experience.

Mr. Shannon, from your perspective, what does the lack of meaningful access to alternatives to MAID raise in terms of the compliance of Bill C-7 with the Charter or with human rights standards? If the Senate passes this bill despite such concerns and a person with a disability who is also living in poverty wanted to mount a legal challenge on these grounds, could you please describe what that process would involve, the cost, both personally and financially, for the persons involved, the implications and the length of time that would likely take? That’s your question.

For the others, you’ve drawn our attention to the ableism, the racism and the intersections of both of those with classism or certainly poverty for folks who are living. If you could, please elaborate on that in the time that is available to connect the dots further between these various intersections of discrimination and how profoundly that impacts the people you represent. Thank you very much.

Mr. Shannon: Thank you for the question. Given that we’ve seen clearly since 2016 the number of individuals who have been seeking MAID, there is a strong empirical indicator that, in fact, a right to autonomy is already being served. Therefore, to take away further the connection to imminent death does not protect section 7, in other words, the right to life under our Charter. In fact, it diminishes it. In a backward way, it does not protect; it permits the diminution of life. In particular, that lands quite squarely on the backs of persons with a disability.

Therefore, it also means that we are discriminated against as people with disabilities. We lose our right-to-life protections, but we also lose what is to be guaranteed, which is equality, under the Charter.

I would further say that cannot be proportional, what is being offered by removing the reasonable foreseeability of death, because ultimately there are unintended and dire consequences.

In [Technical difficulties] —

The Chair: He’s frozen. He’s back. Mr. Shannon, you were frozen.

Mr. Shannon: I’m very sorry.

Poverty and the further intersection of race and isolation that goes with being held in long-term care, all of the social determinants of health precluding youth from both access to community and access to justice, means one may not be able to receive basic community advocacy let alone the very sophisticated legal supports that would be needed in order to bring the matter to a Superior Court and ultimately an appellate court or the Supreme Court. They would need further support both of private financing and/or a non-governmental organization. In other words, it would be a — [Technical difficulties] —

The Chair: Mr. Shannon is frozen.

Senator Pate, you have a minute left.

Senator Pate: Perhaps we could go to the other witnesses, maybe to Ms. Jama, then Mr. Marchand and Dr. Dosani.

The Chair: You have a minute. You can choose which one.

Senator Pate: Let’s start with Ms. Jama, then.

Ms. Jama: Can I actually pass it to the next speaker?

The Chair: Who would you like, senator?

Senator Pate: Then Mr. Marchand.

Mr. Marchand: Thank you. You have to understand, people with severe disabilities in Canada are segregated away from Canadian society. We don’t live in the same world as you do. We’re warehoused into institutions, or we’re made to use special paratransit for transportation, or we’re made to use special schools. There is next to no inclusion for people with disabilities in Canada, even though we helped to create the CRPD, the convention regarding the rights of persons with disabilities. So that’s the issue here. We’re invisible in Canadian society, and we’re the poor, and we face systemic violence at all levels, as I said. And it’s not an exaggeration. You seldom see people like me and others in your workplace, in public, because we are forced to live outside the realm of where you live.

Senator Pate: Is there any time for —

The Chair: No.

Senator Pate: Thank you.

[Translation]

Senator Boisvenu: I’d like to join my colleagues in congratulating all the panellists we heard this afternoon for their very moving testimony. I would like to wish them all the best.

Ms. Chalifoux, my question is for you. There is one subject in the bill that looks confusing to me, and that is advance consent. Nor does the bill address power of attorney requests. I would like to hear your position on these two matters — advance consent and power of attorney requests.

Ms. Chalifoux: Thank you for your question, Senator Boisvenu. Bill C-7 doesn’t mention advance consent. I remembered the Parker case, the woman who was likely to lose capacity who requested medical assistance in dying. One could argue that this is a form of advance consent because from the moment the request had been accepted, her consent would be valid until she lost capacity. But this is not like the advance consent of people who would normally be expected to give it in the event of lost capacity, because those who request it will eventually lose capacity, perhaps within six months, a year or even years later. This aspect has not been covered at all in Bill C-7. And we’d very much like it to be, but that would definitely require much more deliberation.

Senator Boisvenu: I fully understand that a patient to whom we explain today that they are at stage X of Alzheimer’s disease might be unable, even with the assistance of their attending physician of many years or a specialist, to determine when they will no longer be conscious or incapacitated. That patient and the attending physician will not be able to make an end-of-life decision; when all is said and done, that patient is condemned to suffer a slow or painful death. Is that what you’re telling me?

Ms. Chalifoux: Yes, precisely. That’s the law in effect at the moment. And I must say that in Quebec, the group of experts that studied the question proposed a complete system for advance consent. It went into considerable detail and we hope that together with the federal government, because it is impossible to move forward strictly on the initiative of a province, the bill will ultimately include it.

Senator Boisvenu: Should there be an amendment to the current bill to enable Quebec’s request to be accepted?

Ms. Chalifoux: Do you mean Bill C-7?

Senator Boisvenu: Yes.

Ms. Chalifoux: Yes. That would certainly require an amendment. It would mean accepting the fact —

Senator Boisvenu: So, if denied, it would mean Quebec taking a step backward from where it is today in its overall position on medical assistance in dying?

Ms. Chalifoux: Senator, I’m a little uncomfortable about discussing backward steps. But let’s say that Quebec has studied the issue and is very positive about it. Let’s put it that way.

Senator Boisvenu: Could we say that it might prevent it from moving forward?

Ms. Chalifoux: Perhaps.

Senator Boisvenu: Thank you very much.

Ms. Chalifoux: You’re welcome.

The Chair: Thank you.

[English]

Senator Cotter: I don’t have any questions. Thank you.

Senator Harder: My question is for Mr. Shannon. Mr. Shannon, you will know that in the Carter decision, the Supreme Court recognized a right to MAID for individuals with:

. . . a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

Is it your suggestion to distinguish disabilities from illnesses and diseases that cause similar enduring and intolerable suffering? As you know, the Supreme Court has excluded such a distinction. I would be interested to hear your view.

Mr. Shannon: That’s a very good question and one I’ve grappled with frequently. In my view, disability is very distinct because we are talking about a very distinct community within Canada, and therefore frequently persons may have a distinction. They may have a disability but not be ill. The real dilemma of the current legislation is that it appears to thread the two together and/or marry the two. As a result, discrimination arises. To simply see a person with a disability, one does not see an equal member of the Canadian family. One sees a sick individual, and then the step from illness to having a grievous illness is all too very close.

Now, as a result, I don’t think that the word “disability” is necessary within the legislation because if a condition is grievous and irremediable, then the person probably does have a disability. So it is, within the context of what you have just raised, I would think or I would suggest is superfluous.

Senator Harder: Thank you.

[Translation]

Senator Dupuis: I’d like to thank the witnesses we’ve been hearing from for more than an hour, and helping us explore the question of medical assistance in dying. So thank you for your testimony.

My first question is for Ms. Chalifoux. Ms. Chalifoux, you spoke about advance consent. In the working group on medical assistance in dying for those who had lost capacity, of which you were a member, and which submitted its report in 2019, you made a recommendation about advance consent.

For Bill C-7, might it be possible, without addressing your recommendation on advance consent, for Bill C-7 to be changed to ensure that the final consent waiver should remain applicable, because it is a consent that would be waived in all instances, whether death is foreseeable or not?

Ms. Chalifoux: Thank you for your question, Senator Dupuis. The issue of reasonably foreseeable natural death and loss of capacity with respect to the proposal that has been made for Bill C-7 would not really be applicable to the advance consent of someone who is afraid of losing capacity over the long term to benefit from medical assistance in dying simply on the strength of a final consent waiver.

That’s because it is an extremely complex problem. It requires establishing an entire system of applications and forms, and making sure that consent is free and enlightened. When will this happen? Does the person wish to have medical assistance in dying when there is a total loss of capacity? What does that mean precisely? Will the family’s opinion be requested? How will all of this be articulated? We’ve studied all kinds of data in our report, much of which cannot be addressed with merely a short section stating that there is a final consent waiver. I further believe that it would be a disservice to citizens to do so without any guarantees or safeguards, because it is also an extremely sensitive issue.

Senator Dupuis: Thank you. My second question is about end-of-life continuous sedation. We know that in Quebec there is a commission on end-of-life care that monitors the Quebec system. In its report, the commission provided statistical data about the number of people who received, and hence who had agreed that the doctor at a certain point would administer continuous palliative sedation to them, in other words sedation leading to death.

I’m trying to reconcile the idea of palliative sedation administered on the initiative of the physician without the person in question being involved in the decision, because palliative sedation is often administered to people who are not necessarily still capable of consenting, and hence it is the physician who takes the initiative. Is this a problematic issue — the administration of palliative sedation on the initiative of the physician, without anyone being informed of it, and without consent?

Ms. Chalifoux: This reminds me of my years in palliative care practice because at the time, there was no medical assistance in dying and continuous palliative sedation occurred on a regular basis. It was an accepted practice and still is, and it’s better regulated now than it was before. The question of free and enlightened consent for people to whom continuous palliative sedation is being administered until death has been accepted legally in instances where the family makes the decision, that is to say when the person or respondent gives a mandate in anticipation of incapacity, requests that a person be appointed, or in accordance with section 15 of the Quebec Civil Code, it would be the father, the mother, the spouse or another person who would make the decision. The process is assumed to have been carried out, that is to say that the physician, in accordance with the person legally authorized to decide for the patient, determines whether under the circumstances it would be appropriate to administer continuous palliative sedation. Because very often at that point, the patient does indeed have reduced capacity, while perhaps not entirely incapacitated, but has trouble making a free and informed decision. You’re right. But based on my experience and the law, the physician may inform people that he is available and that that might be done, but final consent is given by the legally authorized respondent.

Senator Dupuis: That means that in the current circumstances, we agree that people other than the persons themselves make a decision about continuous palliative sedation whereas we do not necessarily allow the people themselves to decide to request medical assistance in dying?

Ms. Chalifoux: Those individuals could request it if they have not lost capacity. That’s the first thing. If capable, it’s the person who decides. If not, that’s when substituted consent comes into play.

Senator Dupuis: Thank you.

Ms. Chalifoux: You’re welcome.

[English]

Senator Batters: Mr. Shannon, can you tell me, in your view, is there any amendment that could make Bill C-7 acceptable, or from your perspective is the very motion of expanding assisted suicide to those who are not approaching their natural death too problematic to proceed?

Mr. Shannon: I’ve indicated that I do not believe an amendment is necessary. We are just on the cusp of the fifth anniversary of Bill C-14, which requires a review. That would be the proper forum in which to have a thorough review and test the data — which currently has been flawed — that has been accumulated and then really give it a proper and thorough analysis. Right now, the amendments, I would submit, are premature.

However, if there is to be any amendments, it does require many more thoughtful legal safeguards, and I would suggest, for example, that a personal support worker or a home-care worker should not be able to be a signatory to a request for MAID.

To physicians: I’m deeply concerned that just providing information to a person on where they can find community supports is something like asking a cardiologist to be a carpenter. It is a specialization and expertise within the disabled person’s community to know where those supports are and how to find them. It’s not in the bailiwick of specialists. So when you talk about whether there should be any amendments, the safeguards are inadequate. Therefore, I do think, if anything, there must be a better review, an autonomous and arm’s-length form of judicial or quasi-judicial oversight, and a test that there is not only consent but there is not coercion by family members and never should resources be a rationale for MAID. Thank you.

Senator Boyer: I’m going to pick up on what Senator Batters has just asked, but my question is for Dr. Dosani. We’ve heard through the pre-study and we’ve heard this evening that a common concern among Indigenous communities and disability organizations is that the expansion of MAID may disproportionately affect Indigenous persons and persons with disabilities if these individuals do not have sufficient access to health care or support services. As you know, lack of access to health care is a serious concern for the population that you serve.

In your opinion, are the safeguards that are in Bill C-7 sufficient to address these concerns, and do you believe there are additional safeguards that this committee should consider offering better protection?

Dr. Dosani: It goes without saying that due to ableism and the long-standing effects of systemic racism, the impacts and inequities we see as outcomes for people with disabilities and people who are Indigenous in our communities are grave. There are stark differences. For example, in Toronto people experiencing homelessness represent 25% of the homeless population but 1% of the people who live in the city, for example.

Again, my understanding is Bill C-7 is likely to pass. Canadians have spoken. We’re moving ahead. If we don’t build up the structures around them, around money, around housing, around harm reduction, around mental health, people will be put into vulnerable positions where they may be more likely to choose medical assistance in dying because they don’t have access to care. I mean any kind of care: palliative care, sure, I’m a palliative care doctor, but health care, primary care, food, money, and so on and so forth.

When looking at the safeguards that have been put into place, I could get into the minutia of making small suggestions of moves here, micro-movements right or left. There is no micro‑movement that can really protect people other than investing in housing, other than investing in basic income strategies, pharmacare.

I know that these are not mutually exclusive processes, and I know I’m coming off somewhat as an ideologue. I also appreciate these are not from the same pool of resources at the same time, but this energy, this motive to get this through, I think because it’s tightly packaged and it’s a medical procedure, we can do it. I just hope we have the same energy around these other bits that really can derive equity for people.

I don’t think there is any specific micro-change I can suggest to address what I am talking about, which is essentially suffering due to inequities, ableism and racism. Thank you for that question.

Senator Boyer: Thank you, Dr. Dosani.

Senator Pate: Dr. Dosani, if you wanted to elaborate any further on what measures you think the Senate should be taking with respect to these areas, you may, recognizing that we have no ability to invoke any kind of legislation that involves government spending and in light of the fact that the government, during this during COVID process, has pivoted and provided national initiatives, albeit that have left behind 1 in 10 people in Canada. I would welcome that addition if you would like to add anything further at this stage.

Dr. Dosani: Thank you so much. I appreciate that the focus of Bill C-7 is not particularly this component, but the conversation needs to happen. MAID has highlighted structural vulnerabilities, as my colleagues across the country have talked about today. We need to work to address them.

The first is the National Housing Strategy Act which really needs to be put into play. For those who are not aware, the Canadian Alliance to End Homelessness Recovery For All campaign provides a six-step approach to ending homelessness in Canada. It is tangible. It is doable. We can cure homelessness, and COVID has shown us that we can do that.

Another piece to consider is the role of basic income in ending homelessness in Canada. Another one would definitely be pharmacare. Given that one in 10 Canadians cannot afford medications, this is an important upstream social policy that can derive change. Scaling up harm-reduction approaches and services across Canada, from supervised consumption sites to overdose prevention sites and the licensure that is needed to do that, has to be part of these kinds of conversations.

I said it before; I’ll say it one more time very quickly. It’s okay with me if Canadians have spoken and the persons I care for want to get medical assistance in dying. Fine, we’ll get it for them. But it will be neatly packaged. In two weeks, we’ll get it for them. It will go down. It will happen, but it takes me years to get people housing. It takes me months to get them income supports. And it takes weeks to months to get them mental health and addiction services. That is morally distressing for front-line health workers like me. You can see what I’m talking about. It just doesn’t fully make sense, although I appreciate that’s not the full capacity of this conversation. Thank you for the question.

Senator Pate: Thank you, Dr. Dosani.

Ms. Jama, thank you for sharing about your early years. It seems like you’ve had a lifetime of challenges.

I thank all of you for speaking about your work as well as your lives in terms of these challenges. What is it about Bill C-7, in particular, that seems to have brought together an entire new generation of disability justice advocates? What is it that’s different or more alarming in Bill C-7 than it is in health care in general, again expanding on what Dr. Dosani has said? If you’re comfortable, Ms. Jama?

Ms. Jama: The conversation that we’re having right now across the country is about what we value. Consistently, we are seeing Canadians are not valued if we don’t have the ability to produce or hold a job. We’re not seen as people who are able to secure housing and social services on our own, without supports from government. We need to be having conversations that say, at the centre, that disabled people, regardless of our income and our ability to produce, every life is valuable. But instead of centring these conversations, our governments are pushing forward and have pushed forward Bill C-7, while not doing things like passing universal basic income or giving more than piecemeal funding to disabled communities during a literal pandemic.

People with disabilities in our long-term care home systems and across this country have been the hardest hit when it comes to COVID-19. I think Indigenous and Black peoples specifically who have experienced forced sterilization in the history of this country, forced institutionalized at the Orillia Asylum for the Idiots and the Feeble-minded. It’s engrained in our history in Canada that disabled people and racialized people have been abused because our bodies are seen as different, and that connects race and our abilities. Not to centre that in this conversation, while we’re passing this bill around euthanasia, is dangerous. It’s opening a can of worms that I think will be a regrettable part of our history here in Canada.

The Chair: Thank you very much.

Senators, we have reached the end of our day just now. I caution you tomorrow is going to be a very long day. We start at 9.

Mark, do you have anything to add to what I’ve said?

Mr. Palmer: No. That’s correct. We start at 9 a.m. EST tomorrow.

The Chair: We will see you all tomorrow morning.

To the panellists, what you have said will stay with us for a very long time, whether in this bill or in our other work. You showed courage in sharing with us about your challenges. But you weren’t really talking about your challenges; you were talking about your community, meaning the disabled people with whom you share your lives with, and how tough it is. I can assure you we will remember this, and it will reflect in other work we have as well. So thank you for being here today. We really appreciate it.

(The committee adjourned.)