Medical Assistance in Dying Committee on Nov. 18th, 2022

[The Joint Chair, Hon. Yonah Martin]

Ms. Peters, you mentioned that you have done 80 Zooms. What are some of the key findings, or maybe the common thread that we should be aware of, that you've heard from the Zoom gatherings you've held?

[Gabrielle Peters]

I heard fear—a great deal of fear, and overwhelming....

You have to understand that none of you understand what it's like to go to a doctor, ask for help and have them suggest death, and how that irrevocably alters your relationship. Many are avoiding the medical care that they need. Others are struggling with suicidal ideation being set off that they finally had under control after years and years of therapy.

It's taunting us. People are suggesting.... The questions in this panel of what people are saying we are saying make no sense to me. How can you discriminate? How can you ask if we're saying only disabled people shouldn't be allowed, when the only people who are eligible are disabled people? This is not a matter....

You have singled us out, not us. It's you who have singled us out.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Ms. Peters.

Thank you, Senator Martin. It's back to you as the chair.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Again, we want to thank all of our witnesses for appearing before us today. This is a very difficult topic for all of us. We thank you for your testimonies.

With that, we'll suspend for a few minutes to prepare for our second panel.

[The Joint Chair, Hon. Yonah Martin]

Colleagues, we're ready to resume. We want to thank our witnesses who are here in person, as well as those joining us by video conference.

We have with us, as individuals, Alicia Duncan and Christie Duncan, by video conference.

From the Collège des médecins du Québec, we have Dr. André Luyet, executive director, and Dr. Mauril Gaudreault, president.

From ARCH Disability Law Centre, we have Kerri Joffe, staff lawyer, also by video conference.

Thank you for being here with us, everyone.

We will begin with opening remarks. You each will have five minutes. If there are two of you sharing that time—last time, I thought there were two people sharing—please indicate that.

We will begin with opening remarks by Alicia and Christie Duncan.

Will you be sharing your time or will there be one person speaking?

[Christie Duncan, As an Individual]

We will be sharing our time. I will start, and my sister will continue.

[The Joint Chair, Hon. Yonah Martin]

That's wonderful. Thank you. You have five minutes.

That will be followed by Dr. Luyet and Dr. Gaudreault and, lastly, Ms. Joffe.

We will begin with a five-minute testimony from Alicia and Christine Duncan.

Go ahead.

[Christie Duncan]

Thank you.

Good morning. My name is Christie Duncan. I am here today with my sister Alicia to share our family’s experience regarding medical assistance in dying.

While we are not philosophically opposed to MAID, our concern is that the current legislation is written in such a way that many Canadians are accessing MAID out of desperation and not dignity, as it was originally intended.

Our mother, Donna Duncan, chose to end her life through MAID on October 29, 2021. This was hours after being released from a psychiatric unit for a suicide attempt 72 hours earlier. Today we will focus on the facts that we've uncovered through her medical records and the police investigation we initiated into whether the safeguards for MAID were followed before she was given a lethal injection.

In February of 2020, as a result of a minor car accident, our mother was diagnosed with post-concussion syndrome by her general practitioner of more than 20 years. However, due in part to the global pandemic, she was not able to access immediate counselling and physical rehabilitation.

As her symptoms worsened, she was referred to a complex chronic disease clinic with a wait-list over a year long. During this time, her sensitivity to touch, sight and smell worsened. She claimed that she felt pain when eating, which led to her refusal to eat most foods, and as a result, she lost a significant amount of weight.

On October 14, 2021, she asked her GP to assess her for MAID, but he refused, as he did not feel that she had followed his medical recommendations and he did not believe she was on a trajectory for death. On October 24, 2021, our mother had her initial assessment for MAID by Dr. Grace Park and, two days later, by Sean Young, a nurse practitioner, who approved her to die 48 hours later after meeting her only once.

How did the opinion of someone who had been caring for my mother for over 20 years carry less weight than the opinion of two people who had just met her and simply ticked off boxes in a MAID assessment form?

Upon her approval, my sister and I were able to delay her death through the courts, as her mental health was in question. Following this, she was further assessed by several psychiatrists, who all documented that they believed the decision for MAID was being made in haste, but there was nothing they could legally do to prevent her from accessing it as she was found to be of sound mind. Our mother had been a psychiatric nurse her entire career, and our family believes that she manipulated the psychiatrists because she knew what answers to provide.

As of today, we have been denied access to our mother’s documents related to her MAID death, despite the fact that my sister is the executor of my mother’s estate. As such, we have been unable to confirm which track our mother applied for and was approved for, and therefore which safeguards were followed or violated.

I will turn to Alicia.

[Alicia Duncan, As an Individual]

Thank you.

Today in Canada, in order to qualify for MAID, you must have an incurable medical condition and experience suffering that is intolerable to you. By that definition, the majority of Canadians qualify for MAID. The core legislation itself is problematic.

Based on our experience, we have outlined the following recommendations for your final report.

First, there should be mandatory access to health care. If not giving Canadians access to MAID infringes on their human rights, then not giving them access to much-needed health care in a timely manner also infringes on those rights. We require clear definitions. “Imminent” is defined as “about to happen”. This needs to be clearly defined in our legislation in the context of MAID and where imminent death is foreseeable.

We also require clearly defined safeguards. The current safeguards are just too ambiguous.

Second, there should be an increased number of independent witnesses. There should be a requirement for at least three independent witnesses to be formally interviewed as part of the assessment.

Third, there should also be a pre-death assessment review. Doctors should be required to submit all assessments to an independent review board prior to a patient's death.

Fourth, there should be continuity of care. Multiple assessments should be completed by the same medical professional. The primary doctor's opinion should hold the most amount of weight in a MAID assessment.

Fifth, there should be mandatory wait periods. There should be no exemptions for patients with mental health or non-terminal disabilities.

Sixth, there should be mandatory release of records. Hospitals and health authorities should be required to release unredacted copies of their MAID assessment records to those who are entitled to them.

Donna Duncan was our mother's name. Please don't forget her, and help us ensure her death was not in vain.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much for that testimony.

Next, we will—

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

I have a point of order, Madam Chair.

Can we advise our witnesses, or those in the gallery, not to take pictures during this session? There are pictures and recordings being taken. I believe the rules indicate that you cannot take any pictures during a meeting.

[The Joint Chair, Hon. Yonah Martin]

Yes. Thank you very much for that.

Dr. Luyet and Dr. Gaudreault, will you be sharing your time as well?

Okay, thank you. You have five minutes in total.

[Dr. Mauril Gaudreault, President, Collège des médecins du Québec]

Thank you.

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

Was the ruling made on the point I raised? I didn't hear—

[The Joint Chair, Hon. Yonah Martin]

Yes, I agreed. That is indeed the rule.

[Pierre Dalphond]

I didn't hear a warning to the witnesses.

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

Were people warned and told not to do that?

[The Joint Chair, Hon. Yonah Martin]

I assumed everyone was listening. I'm sorry.

The warning is that during our proceedings, there should be no photographs taken.

[Gary Anandasangaree, Liberal, Scarborough—Rouge Park, ON]

I believe someone took pictures, but there is also someone recording, Madam Chair.

[The Joint Chair, Hon. Yonah Martin]

Oh, pictures and recordings are definitely not allowed. Everyone has an understanding of that.

[Stanley Kutcher]

Before we proceed, can we have assurances that recording is not happening and that pictures are not being taken?

[The Joint Chair, Hon. Yonah Martin]

I can't see the full screen. Are you saying that someone is recording online, or is it someone in this room?

Does everyone understand that? I see nodding heads.

Thank you for that reminder.

Next we will go to Dr. Luyet.

[Dr. Mauril Gaudreault]

If I may, Madam Chair, I'll begin.

Madam Chair and Mr. Chair, members of the committee, good morning.

I am Dr. Mauril Gaudreault, the president of the Collège des médecins du Québec, whose membership is over 30,000 Quebec doctors and aspiring doctors, in all specialties. I am accompanied by the executive director of the Collège, Dr. André Luyet. I have been a family doctor for over 40 years. Dr. Luyet has been a psychiatrist for over 30 years.

Thank you for having us so that we can address the issue of disability and medical assistance in dying.

To begin with, I would remind you that the Collège's mission is to protect the public by providing quality medicine. We are a professional body that ought not to be confused with medical federations that defend the interests of their members.

The Collège appeared here before, just a few weeks ago, on the topic of medical assistance in dying, represented by Dr. Louis Roy. It did not go unnoticed. Even the federal minister of disability inclusion, Carla Qualtrough, was upset when we explained the Collège's position on 0 to 1 year-old babies to her.

Let's reset the clock, please. Medical assistance in dying is a form of care. It's a medical procedure that may be appropriate in certain circumstances. It is not a matter of politics, morality or religion, but rather a medical matter.

Medical assistance in dying is governed by the Criminal Code, guided by court decisions and has been the focus of ethical and deontological discussion for more than two decades. It has been accepted. Society has evolved. There has been growing individualization in care. Every individual is now treated as such, rather than simply on the basis of belonging to a reference group.

On the issue of 0 to 1 year-old babies, the Collège now believes that for them as well, medical assistance in dying may offer a responsible ethical solution to avoiding an unacceptable and ineluctable end of life in unbearable circumstances.

In 2021, we drafted a report on medical assistance in dying. It's a rigorous report that required a year of deliberation by recognized experts, including Dr. Luyet. We submitted it to the Government of Quebec in December 2021. The report said that in the event of a very negative prognosis and horrendous living conditions, in instances of serious malformations or polysymptomatic syndromes with no prospect of relief or survival, medical assistance in dying could be included among the options for parents to consider.

The Collège never mentioned euthanasia for babies, nor the idea of administering medical aid in dying, without the consent of parents. What it did say was that it was an avenue to be explored and that the suffering of parents also had to be taken into account, and that's the extent of it.

Similarly, for mature minors aged 14 to 18 years, our thinking was based on the following considerations. First of all, suffering does not pay any attention to age. Suffering has no age. Then, the act already acknowledges that minors, aged 14 and over, have the right to consent on their own to certain types of care, such as abortion. The consent of parents or the guardian is compulsory, of course, when care represents a serious risk to a minor's health.

As for disabilities, the view of the Collège is that they also, for certain patients, lead to suffering that is unfortunately as unbearable and untreatable as the suffering caused by certain serious illnesses. From the medical standpoint, physical and mental suffering can be assessed clinically, whether by direct observation, or a questionnaire and clinical examination by the doctor. It's also a fact that patients experiencing the suffering can sometimes express what they are feeling. This also applies to vulnerable clients like people who are under guardianship or unable to give consent.

We conclude by taking advantage of this forum to remind everyone of how urgent it is to harmonize Quebec and Canadian statutes with respect to the concept of disability. The Canadian act uses the terms "illness", "condition" and "disability", whereas the Quebec act uses only the word "illness". This limits the ability of certain Quebeckers to obtain the care to which they would have been entitled had they lived elsewhere in Canada. The Collège des médecins believes that there should no longer be two acts for the same form of suffering.,

Thank you for hearing us out and we'll be happy to answer any questions you may have.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Gaudreault.

Next we will hear from Ms. Joffe.

[Kerri Joffe, Staff Lawyer, ARCH Disability Law Centre]

Thank you.

Good morning, members of the committee. I am a lawyer working at ARCH Disability Law Centre. ARCH is a specialty legal clinic that provides legal services to people with disabilities in Ontario. ARCH is a poverty law clinic, meaning that the majority of the legal services we provide are to low-income people with disabilities. ARCH also works on national and international disability rights.

We are deeply concerned about the availability of MAID for people with disabilities whose death is not reasonably foreseeable. At ARCH we have clients who have died by MAID, who have applied for MAID or who are contemplating MAID. This is not because they want to die; it's because they cannot get the housing, medical care, disability services or supports they need, and they are too poor to afford to purchase these services privately.

I'll give you just one example, with details and identifying information changed in order to protect the privacy of the person. It's a person in their thirties with a degenerative neurological condition. They have very limited mobility. They need assistance with all activities of daily living. That includes getting out of bed, getting dressed, toileting, cooking, cleaning, grocery shopping, etc. This person has, quote-unquote, “high support needs”, but they live a full life in their own apartment. They work part time and spend time with friends and volunteers. This is possible because they receive some provincial funding to hire their own attendants and they have family who fill in the extra hours of support.

Recently, however, their family member died, leaving them without support for many hours each day. They've been refused additional funding for attendant services. They've been told that the only way to get their high support needs met is to move into a long-term care facility. Moving would require the person to leave their community, give up most of their employment, give up their independence and live in a completely inappropriate setting among seniors more than double their age.

Facing this choice, which is not really a choice, the person has decided to apply for MAID. They've been very clear: They don't want to die. They are not suffering because of their disability. They want to continue living in a dignified way in the community, but that's not possible, because the supports they need are not available.

These kinds of client experiences, and numerous similar cases that have been reported in the media, leave us deeply concerned about the dangerous impact that track two is having on low-income disability communities. The track two safeguards built into the legislation may be intended to protect vulnerable people and ensure that decisions about MAID are free, informed and unambiguous, but in our experience, the reality is that there is no real free choice for people with disabilities who exist in pervasive socio-economic deprivation and who have no alternatives for living a dignified life in the community.

I am not expressing an ideological position that is anti-MAID, nor am I expressing a position that seeks to undermine autonomy or the right to make decisions about one's own life. Everyone must be free to choose, especially when it comes to deeply personal decisions about life and death. What I am pointing out today is that based on the experiences of the clients and disability communities that ARCH works with, our law appears to offer freedom to choose medical assistance in dying, but in fact there is no freedom of choice for many disabled people.

At a UN conference in June, Professor Gerard Quinn, the UN special rapporteur on the rights of persons with disabilities, said that when it comes to autonomy, it is important to distinguish between “myth” and “operation”. There's a myth that MAID law gives us all equal rights to make decisions about our death, but in operation, in reality, for many people with disabilities, choices are weighed down by accumulated disadvantages. We cannot talk about free, uncoerced choice if we are not at the same time radically addressing social and economic supports, expanding access to health care and housing systems, and, in short, giving people with disabilities the wherewithal to live the lives they want to live in the communities of their choosing.

Canadian law has recognized this concept too. The Supreme Court of Canada has said that equality looks not only at the choices that are available to individuals but also at the social and economic environments in which they play out. In Canadian law, inequality analysis recognizes that some people may be disproportionately affected by structural conditions that constrain their choices.

ARCH urges the committee in its final report to government to be clear that some people with disabilities are being induced to consider, apply for and go through with MAID not because they are suffering because of their disability but because of social and economic inequality.

Thank you.