Medical Assistance in Dying Committee on Nov. 22nd, 2022

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Wallin.

Now finally we go to Senator Martin for three minutes.

[The Joint Chair, Hon. Yonah Martin]

Thank you to all of our witnesses, first of all.

My first question is for Dr. Janz.

How do you think the expansion of eligibility for MAID to people with disabilities, who are not at end of life, will impact the current generation of children and youth growing up with disabilities?

[Dr. Heidi Janz, via text-to-speech software]

It's something that I've been thinking about a lot since the expansion of eligibility for MAID to people with disabilities who are not at end of life.

As someone who had most of my K-to-12 education at a school for kids with physical disabilities, I find that the latest expansion of eligibilities for a state-sanctioned death particularly chilling. Roughly half of the kids at our school had a life-limiting condition like muscular dystrophy, which at that time had a life expectancy of 14 to 18 years.

Every student in that school grew up knowing that some of us would live longer than others, but we also knew that all of us would live with the best quality of life possible until we died. This is not the message that Canadian kids with disabilities are growing up with in this “brave new world” of MAID.

For a mature minor, they are more likely going to hear that “It's only natural that you're depressed and you're tired of your life. You're disabled. Maybe you should go get MAID.”

I feel for kids with disabilities in this country. I fear for kids with disabilities in this country.

[The Joint Chair, Hon. Yonah Martin]

Do I have time for one more?

Okay, Dr. Stainton, can you comment on the over 15,000 working-age Canadians in long-term care homes, and any concerns you have regarding this population under the current track two framework.

[Dr. Tim Stainton]

Very quickly, most of those people don't want to be in long-term care. They are there because the home care system has ceilings on what it will fund. We had the tragic case in B.C. of Sean Tagert who just wanted to stay in his home for his remaining years with his son. He needed a few more hours of home care to do that and was told that it was not possible and that he needed to go into a long-term care home, where really he couldn't have a relationship with his son, so he chose to access MAID because of that.

I'm working in Nova Scotia right now where they just had a human rights judgment against the province ordering it to get, I think, it's 400 some people in Nova Scotia alone.

All of us would think that. If you're 30 years old and all of a sudden you're told you're going to live in a long-term care facility, what kind of life is that? What kind of prospect is that? What kind of autonomy is that? You have no significant life choices.

If you look at from Jean Truchon and multiple other people, Truchon said that the cause of his suffering was that he couldn't face the prospect of life in an institution. There is no reason from a care perspective that he couldn't have been supported at home other than the funding.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

This brings our first panel to a close. I would like to thank, on behalf of the committee, Dr. Janz, Dr. Shaw and Dr. Stainton. Thank you very much for your opening remarks tonight, for expressing your views and for answering all of our questions on this difficult issue with respect to MAID in the context of people with disabilities.

An extra thank you to you, Dr. Shaw, for speaking to us about inmates in correctional services in the context of MAID again. Thank you very much. It's very much appreciated by our committee, which has to deliberate on this very important matter.

With that, we will suspend briefly and prepare for the second panel.

[The Joint Chair, Liberal, Marc Garneau]

Colleagues, we will start our second panel.

Just before we start, I will make a few administrative comments.

For all of the members as well as the witnesses, before speaking wait until I or my co-chair recognizes you by name. I remind you that all comments should be addressed through the joint chairs. When speaking, please speak slowly and clearly for the benefit of the interpreters.

You may have questions in French or in English. Use the interpretation button on your screen if you are in virtual.

With that, I would like to welcome the second panel.

Our witnesses tonight are all appearing as individuals. We have in the room with us Liana Brittain. Virtually, we have with us Dr. Karen Ethans, associate professor, and David Shannon, a barrister and solicitor.

Thank you all for joining us this evening as we continue our study of MAID in the context of people with disabilities.

I will ask Ms. Brittain to start off. Each of the witnesses will make a five-minute opening statement and then we will get to questions.

The floor is yours, Ms. Brittain, for five minutes.

[Liana Brittain, As an Individual]

Thank you, Mr. Garneau.

Thank you for the opportunity to have our collective voice heard in this forum, where decisions are being made that directly impact our individual lives when we are at our most vulnerable. I'm here to symbolically represent an enormous group of physically disabled people who are making their end-of-life journey. We are the experts who are actually living the MAID experience.

You brought up the word “vulnerable”. After five and a half years of volunteering as an advocate in this field, I've come to understand that medical assistance in dying is so much more than just a series of injections or a self-administered cocktail provided by expertly trained staff during a medical procedure. It is in fact a very broad spectrum of services provided by our medical community at the request of the individual.

First, I want you to envision changing your perception of what a medically assisted death is. Paul, my late husband, was a psychotherapist in private practice. He maintained that if you could make a five-degree shift in your perception, you would see an issue from a very different perspective, one that you had never realized existed. So I'm now challenging you to make that five-degree shift in perspective and look at medically assisted death from a fresh new angle.

I would like to share with you some examples of ways in which the medical community helps people voluntarily end their suffering and die with dignity on their own terms every day across Canada. They are MAID, medical assistants in dying, and yet we don't call them that. Why not? These medical practices have been in use for decades, and in some cases hundreds of years in cultures throughout the world. I call it a “spectrum” of choices, because it flows from a more passive action at one end of the scale to a more hands-on, active role at the other end.

I believe it is our responsibility as a society to educate everyone, in particular those with physical disabilities like me, about what options are available to them in collaboration with the medical community as they make the final leg of their end-of-life journey. This is true people/patient-centred care, care where the individual is in charge of taking responsibility and actively participating in their own plan. I may be physically disabled, but I want to know what my choices are. I want to weigh those options and make an informed decision about what I can choose to do next, in consultation with the experts. I don't want to feel vulnerable.

There is a medically assisted spectrum of choices that a person could make if they only knew they existed.

There's cessation of treatment. There may come a point in a person's illness when they decide that further treatment is of no value to them for whatever reason. It's their decision. It's their choice. No one can decide what is too much suffering except the individual. At this juncture, the medical community and the individual agree to stop treatment, knowing that to do so will ultimately result in their death. This is a form of medically assisted death.

With a “do not resuscitate” order, one can say the same. DNR is a mutually agreed-upon contract between the medical community and the individual. In medical crisis, no treatment will be offered to sustain life, thus leading to the person's death. Once again, this is a form of medically assisted death.

There are self-injected morphine pumps. Before MAID was available, my father chose this option. He knew he was dying and had only a few hours left. He was given a morphine pump and was allowed to make his own decision.

The same goes for voluntarily stopping eating and drinking. Our medical community supports people in a variety of circumstances and eases their symptoms when they choose to stop eating and drinking, knowing that their life will end when they stop.

Palliative sedation and palliative coma are two more examples of medical assistance in dying. The MAID procedure, as we call it today, is one that most readily comes to mind when we think of medical assistance in dying. If we choose to acknowledge that there are other forms, then I suggest we rename these.

By sharing this type of information and changing people's understanding of what a medically assisted death really is, we can educate people with physical disabilities about what their options could be. When people become educated about their rights and options, they can make truly informed decisions: decisions that reflect their own needs and wants, ones that empower them and grant them their human right to die with dignity on their own terms. What an incredible gift to give a person as they transition from this life to whatever comes next.

Most importantly, please remember the three Es: envision, educate and empower. It is imperative that you provide us with the knowledge and the information we need to make our own informed choices: the ones that best meet my—our—individual needs. Empower us to die with dignity on our own terms.

[The Joint Chair, Liberal, Marc Garneau]

Thank you.

If you could wrap up very quickly, we're way over time.

[Liana Brittain]

I'm done. I had one more sentence.

[The Joint Chair, Liberal, Marc Garneau]

That's perfect. Thank you, Ms. Brittain.

We'll now go to Ms. Karen Ethans.

You have five minutes, Ms. Ethans.

[Dr. Karen Ethans, Associate Professor, Internal Medicine Section, Physical Medicine and Rehabilitation, University of Manitoba, As an Individual]

Good evening.

As a rehabilitation specialist physician, I have 23 years of clinical and research experience with people with spinal cord injury. I follow them from acute care through rehab and transition to the community, and lifelong to manage symptoms, prevent complications and help improve quality of life.

Most people with spinal cord injury live for years—some up to normal life expectancy. My concern with MAID since Bill C-7 is the removal of the criterion that one is expected to die in the foreseeable future. People with a new, severe neurologic disability are now able to ask to end their life after only three months. I hope to convince you that three months is far too short.

I do not believe that people with new severe neurologic disability will have the ability to make an informed choice to choose death until they have had the opportunity to live with their new impairments and disabilities, reintegrate into the community and realize the excellent quality of life that is experienced by most with these disabilities.

Imagine waking up after a severe car accident, for example, and learning you have a spinal cord injury. You can't move your legs and maybe not even your arms. Many of you will think, that you wouldn't want to keep living like that. Yes, that's what many people with new spinal cord injuries think in the early months. Many of the acute care health providers that person meets early on have the same viewpoint. A lot of them have never cared for someone with a significant neurologic disability who is living a full life in the community. Many of the friends and family of that person who visit early on have the preconceived view that their loved one won't have much of a life going forward.

The person with a new spinal cord injury will spend months in hospital and in the first few years will still be adjusting to their new life. In these early months and years, suicidal thoughts and wishes to die are held by many. People can go through some very dark times. However, I can verify from my own research, other research done by colleagues and others, and my clinical experience that most people who have a chronic spinal cord injury—that is, at least a few years—rate their quality of life as very good and equivalent to or better than many people who are able-bodied.

In a research paper that I recently published with colleagues, it was found that most people with chronic spinal cord injury admitted that early after their injury, they had a wish to die. However, all of those people who we interviewed declared they no longer wished to die and would not accept MAID at that point in their life. They felt that being offered MAID too early on was wrong and that people were needing to live the life experience with spinal cord injury before they could make that kind of choice.

Literature supports that it takes years for people with new neurologic disabilities, such as stroke...and people cannot make such a decision and adjust to their new normal for at least two years.

I want to tell you a story that's reflective of many of the scenarios I've witnessed.

I was asked to see a young man in ICU on a ventilator with a high spinal cord injury. I was asked to discuss prognosis. The patient and mom were so relieved when I reported that he had a good chance of getting some significant improvement, based on my exam. The mom came to me crying and reported to me that the ICU doctor was advising them that they should turn off the ventilator—that his life would be terrible and not worth living. Guess what? That young man in ICU walked out of rehab to go home months later.

My point isn't that many of these patients get such excellent recovery, but it is rather to reinforce that we can't let our preconceived notions of what we think life with a disability would be like to cloud our judgment or care decisions, as we have not lived that life.

MAID now being part of care choices early on in the times when the person is really vulnerable, struggling to accept their new disability and before they've had the opportunity to realize what excellent quality of life their future may hold is a grave failure to these patients. It should not be part of a care choice for a long time, even up to years after their injury.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Dr. Ethans.

We'll now go to Mr. David Shannon for five minutes.

[David Shannon, Barrister and Solicitor, As an Individual]

Thank you very much.

Inflammatory stories about a painful end of life have often been shared with this committee to promote ideology rather than to encourage proper analysis and cogent debate. I will not do that tonight.

I am not speaking about the far end of life. I am talking about a person such as me, a person who's lived with an upper-level spinal cord injury for over 41 years, a person who has practised in the area of disability rights and mental health law for over 25 years, a person who, early on, shortly after that accident, had dark days and for 41 years has been grateful to be able to embrace life, its wonders, its altruism and its aspirations.

That's not available, I know, to many people shortly after their accident or other catastrophic injury or disability, and there's pressure now with this new legislation directed by the state that says, “Your life may not be worth living. Extinguished is okay.”

At the outset, though, I do ask each of you to accept the stark truth that is often ignored, and that is that often suffering experienced by persons with disabilities in Canada is at the hands of the state. The suffering is caused by the state. We experience a pernicious form of human rights denial that includes poverty and unacceptable markers in the social determinants of health.

Tonight I wish to especially speak, though, to an inherent flaw, given my limited time, a flaw or contradiction in the law. Paragraph 241.2(1)(c) of the Criminal Code, which many of you know, states that a medical condition will make a person eligible for MAID because that condition is “grievous and irremediable”.

Canadian human rights legislation and the Supreme Court state that physical and mental conditions are personal effects to be protected from human rights abuses in a manner no different from race, sex, gender, religion and many other grounds of discrimination. Moreover, courts have stated that disability is a social construction; therefore, remove the social barriers and you remove the discrimination. This indicates that discrimination is fully remediable.

We ask, what is disability? Is it a physical or a mental condition that makes one eligible for medically administered death or is it a remediable social construction?

In an analysis for MAID assessment, people, when assessing for MAID, must consider more than just an extreme medical-only determination and be balanced with established human rights norms. I'm talking about human rights that find that, if you can stop the suffering through changing socio-economic condition, then, in fact, it's a remediable condition.

I would submit that nurses, nurse practitioners and physicians do not have the expertise. For people such as me, people who live in the world of independent living, you need to understand us as a community, a community that does and is able to speak to independent living and speak to the importance that the disability, the social construction, can be remediated. That will give the full weight and meaning of the word “remediation”. It will also put an important factor into the physician-patient relationship in that, if a physician, through broad and deep analysis, sees that the condition can be remediated by removing discrimination, then a person should not be eligible.

We should not just jump to provide MAID. We never jump to provide death in any other legal context. This, of course, should be given the same and even greater respect, consideration and analysis. Time does not allow me to speak much further, but I want to say and emphasize again that regulations must include a human rights analysis.

Another recommendation is that access to MAID must guard against allowing MAID to be a facilitation for suicide for individuals who are suffering a mental disorder or weakness due to anxiety, depression and vulnerability.

Also, there should be a regulated MAID oversight body that is independent and provides annual reports with full substantive analysis to the minister and the public.

Lastly, MAID should not be utilized to target a population, to target a community, especially an equity-seeking community. It would be unheard of, unthinkable, for any other group or population in Canada. It equally should be disregarded and called what it is—ableism in Canada—should it be directed in a pernicious way at persons with disabilities.

Thank you.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Mr. Shannon.

We'll now go to questions, and I'll pass it over to my joint chair, Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Thank you to all of our witnesses today for their testimony.

We will begin the first round of questions.

Mr. Cooper, you have the floor for five minutes.

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

Thank you, Madam Chair.

Dr. Ethans, you spoke about informed consent in the context of persons who were diagnosed with a new, severe neurological disability. Can you speak a little bit about your research on informed consent? Second, you stated in your testimony that in such cases the 90-day wait period, reflection period, provided for in track two cases is not appropriate. However, you went on to say that, in order to come to terms with and be able to, I guess, comprehend what life looks like, that can take years.

So, if not 90 days, what is the appropriate timeline, and what would be the parameters around that?

[Dr. Karen Ethans]

It's a good question, and nobody has the exact answer.

The study that we did and the one that my Saskatchewan colleagues published this year are very similar studies. The questions by my Saskatchewan colleagues to the people living with disability.... As we've heard today, the experts are the people living with the disability. Those people we interviewed are the experts. I'm not the expert.

For the Saskatchewan colleagues, it was the same thing. They interviewed people with spinal cord injury and with chronic spinal cord injury. We got a variety of answers, with anywhere from a year to five years. One in the Saskatchewan group even said 10.

We know that it can be years. We don't have a definition of exactly how long it will be. The study I talked to you about, on stroke and other neurologic disabilities, found it's two years. We know that suicidality rates in spinal cord injury decrease quite dramatically by seven years.

Hearing the experts—who are the people we interviewed and the people the Saskatchewan people interviewed, and who were the people living with and who had gone through this—they all consistently said that offering MAID before people have had that chance to reintegrate into the community.... They can't make an informed decision until they've had that opportunity.

One lady I work with has a high spinal cord injury. She is amazing. She's a Ph.D. She has three children. She runs the university department she works at. She's a paralympic athlete. She said it took five years before she woke up and realized she was happy that she was alive, and she thinks her quality of life is excellent.

How do you define that? I don't know, but according to the people interviewed, it was anywhere from a year to up to 10 years.

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

Would it be your recommendation that the government consider amending the legislation, or at least explore amending the legislation, to take into account these types of cases?

Again, what would that look like, if that is your recommendation? You talk about spinal cord injuries, but where do you draw the line?

How do you establish another track?

[Dr. Karen Ethans]

It could be a new severe...any medical issue, really, that makes people say, “I wouldn't want to live like that.”

A lot of patients who come into it, like I said, have this preconceived notion that many of us would have if we hadn't worked with that population, which is that living with a severe disability is a life not worth living. People have to get past that. They have to be able to live that experience and be offered the chance to go to university if they need, or whatever.

We talked about a lot of the problems with not offering social resources, like housing, psychological services and everything else. However, we have to make sure that people have lived a true life experience with their new impairments and disability before being able to assess it.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Dr. Ethans.

Next we have Monsieur Arseneault. You have the floor for five minutes.

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

Thank you, Madam Chair.

I'd like to thank all the witnesses for their testimony on this difficult issue of medical assistance in dying and safeguards.

I was fortunate, as was my colleague Michael Cooper, to have served on the first Special Joint committee on Medical Assistance in Dying in 2015‑16.

We heard from a number of witnesses at that time, and one of them made a big impression on me. It was former federal MP and minister, and also former MLA, Stephen Fletcher.

As you probably know, Mr. Fletcher was severely disabled. He was career-oriented and he had an incredible career. He told us he was not suicidal, but that the day he had enough of his irreversible condition, he would not hear of anyone lecturing him.

He had quoted an English poet:

“I am the master of my fate: I am the captain of my soul.”

if I put this in the context of the Carter decision, there's no question that the decision to go ahead with medical assistance in dying must come from the individual, not from others.

I'm setting the stage for the questions I'm going to ask the witnesses.

Mr. Shannon, I'd like to hear your opinion on the centrality of the person seeking medical assistance in dying and the safeguards.

With respect for the person's condition and their profound request, and knowing that they are of sound mind, do you feel any other safeguards should be put in place?

I'm asking you this in hopes of getting a short answer no more than one minute long, as I'd also like to ask questions of other witnesses.

[David Shannon]

I'm glad you raised the point of Mr. Fletcher, a gentleman whom I call a friend, a person who embraced life through living. At the outset of my comments I said that, at the very end of life, as Carter spoke to questions about end of life, I believe that debate is not here tonight.

I was speaking of people with much life to live. What is important in terms of safeguards is to ask the question: Is suffering being caused by the social conditions of that person? If so, then a physician should not be in a position where they are just forced to provide MAID. Those social conditions should be addressed.

The question is right there in the Criminal Code. If it's remediable, then MAID should not proceed. These are the safeguards. If it's remediable, then it must be a reciprocating relationship and the conditions be remediated.

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

Thank you very much, Mr. Shannon. You were very specific.

Dr. Ethans, you mentioned the case of a young patient you are treating. One of your colleagues had suggested that he be taken off the ventilator because he would have an impossible life, an extremely hard life.

Had a request for MAiD been when this was done?

[Dr. Karen Ethans]

No. Thank you for asking that.

I should clarify. My point was to show you that—