Medical Assistance in Dying Committee on May 30th, 2022

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

Good afternoon, and welcome to the meeting of the Special Joint Committee on Medical Assistance in Dying.

I'd like to begin by welcoming all the witnesses, as well as those watching this meeting on the web.

My name is Yonah Martin, and I'm the Senate joint chair of this committee. I'm joined by the Honourable Marc Garneau, the House of Commons joint chair.

Today we are continuing our examination of the statutory review of the provisions of the Criminal Code relating to medical assistance in dying and their application.

The Board of Internal Economy requires that committees adhere to health protocols, which are in effect until June 23, 2022. As joint chairs, we will enforce these measures, and we thank you for your co-operation.

I'd like to remind members and witnesses to keep their microphones muted unless recognized by name by the joint chair. As a reminder, all comments should be addressed through the joint chair. When speaking, please speak slowly and clearly. Interpretation in this video conference will work like it does in an in-person committee meeting. You have the choice at the bottom of your screen of either the floor, English, or French.

With that, I'd like to welcome our witnesses. Thank you for your patience, as we went a bit over time in the first hour.

I'd like to introduce our witnesses. As an individual, we have Dr. Ramona Coelho, physician. From Disability Without Poverty, we have Michelle Hewitt, co-chair of the board of directors; and from Spinal Cord Injury Canada, we have Bill Adair, executive director.

Thank you to all for joining us.

We will begin with opening remarks by Dr. Coelho, followed by Ms. Hewitt and Dr. Adair.

Dr. Coelho, you have five minutes for your testimony.

[Dr. Ramona Coelho, Physician, As an Individual]

Thank you, Madam Chair.

My family medical practice cares for marginalized patients, including those living in poverty; refugees; men out of prison who are facing charges; the LGBTQ+ community; indigenous persons; and those struggling with mental health, addictions, chronic pain and disabilities.

I have experienced childhood racism, bullying and sexual abuse, so I understand that the choice to die can easily be influenced by injustices that life has dealt us.

At prior committees I raised concerns that inequalities and circumstances, such as poverty, trauma, lack of timely access to medical care [Technical difficulty—Editor] can lead to MAID being raised as a treatment option to such a victim of discrimination.

I warned that many injuries and illnesses are accompanied by transient suicidality that ends with adaptation and support, but which on average takes two years. Then the overwhelming majority of persons after those two years rate their quality of life as the same as age-matched healthy individuals. Offering MAID in a period of known increased suicidality would lead to the premature deaths of those who would have recovered.

Now Bill C-7 is the law.

A man had a small stroke affecting his balance and swallowing. The patient was depressed and isolated due to a COVID-19 outbreak on his ward. The stroke neurologist anticipated the man would be able to eat normally and regain most of his balance. He declined all therapy, and psychiatry diagnosed him with an adjustment disorder, but they felt he would improve. However, he requested MAID. Neither of his MAID assessors had any experience in stroke rehabilitation and recovery.

In this acute phase while struggling with his mood and isolation with no therapy to gauge his final level of function, he received MAID. He had no terminal illness, but due to the fact that he was adapting to a slightly thickened diet and so was temporarily slightly undernourished, they considered him “track one” eligible, and he received MAID the following week. No safeguards were technically broken, and yet he died when acutely down, isolated and had not experienced living with maximal recovery from his stroke.

Mr. Ernest McNeill was a 71-year-old widower admitted to hospital for falls. During his admission, he contracted C. difficile, an infectious diarrheal illness. He was openly humiliated by staff for the smell of his room. He developed a new shortness of breath that was not comprehensively assessed. Without the patient requesting it, a hospital team member raised and recommended MAID to him.

The team said he had COPD, and it held a terminal prognosis. The MAID procedure was booked by the hospital team before he even had a second assessment, and within 48 hours of his first assessment he was dead. Post-mortem tests confirmed no significant COPD, and his family doctor also said he didn't have end-stage COPD, but no one had contacted her for collateral history.

MAID was raised with this patient. There is no safeguard in Bill C-7 that forbids raising MAID, and the related amendment was voted down by the Senate. CAMAP has a document called “Bringing Up Medical Assistance in Dying”, and Susan MacDonald mentioned at this committee that MAID should be raised as part of the informed consent process. Was MAID raised because his admission was longer than expected as a result of his being a victim of ageism? Did he choose MAID because his acute care team made him feel horrible? His family believes so.

The “In Plain Sight” report by B.C. and the tragic story of Joyce Echaquan demand that we take these considerations seriously.

Finally, after a CTV W5 story showed a gentleman's MAID provision, the immediate Monday afterwards, a patient let me know that the story was super appealing and that MAID would be good for her. My patient is in her early mid-life, has a recent spinal cord injury and hasn't had time to adjust, receive peer support or proper symptom control, nor reach maximal recovery, but she does now quality for track two MAID within 90 days. The legislation is built in a way that allows for her death before she has had a chance to experience maximal recovery. This case also shows how the government must consider current suicide research showing that messaging promoting suicide may lead to more people choosing it.

The MAID regime appears to be allowing a right to die with government assistance for certain groups. Inadequate safeguards suggest that this has been packaged and thinly veiled as a medical procedure. If this is not the case, I ask the government to reconsider its MAID regime.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Dr. Coelho.

Next, we have Ms. Hewitt.

You have five minutes, Ms. Hewitt.

[Michelle Hewitt, Co-Chair, Board of Directors, Disability Without Poverty]

Thank you, Madam Chair.

I am a disabled woman with multiple sclerosis and live in Kelowna, B.C. At times, my disease has been aggressive and it's fairly advanced. I use a power wheelchair. I have severe fatigue and pain that is sometimes severe. However, I have a great quality of life.

Today, I represent Disability Without Poverty. Roughly two in 10 people living in Canada are disabled, but, among those who live in poverty, four in 10 are disabled. Disabled people are overrepresented. There are twice as many disabled people living in poverty than statistics alone would account for. Often, they live in abject poverty, as disability assistance payments are usually as low as half or two-thirds of the poverty line. We know disabled people have been granted MAID because the intolerable suffering they face is caused by poverty, yet there are conditions they would consider acceptable to relieve that suffering.

Here are just two examples of people from B.C.

Sean had ALS and wanted to live at home. He managed to do so for a number of years. When the constant stress of finding the right care on his own became too much, his health authority offered to place him in long-term care four hours away from his 10-year-old son. Instead, Sean chose MAID. He described the funding decisions and institutional offerings advanced by the health authority as a death sentence.

Madeline has post-viral syndrome and has been living with it for 30 years. There are no Health Canada-approved treatments, but she found a combination of treatments that work for her, and they all require her to pay out-of-pocket. However, she has exhausted all options financially and is currently getting by, month to month, on GoFundMe payments. Madeline says that, when the money runs out, she'll have no option but to use MAID, which she has already qualified for. She says she has no wish to die, but she'll be facing an unbearable wall of pain with no quality of life.

No one in Canada should ever die because they live in poverty. Yet, for disabled people, we hasten that death. We provide a state-sanctioned procedure for those disabled people to die. For Sean and Madeline, we have remedies for their suffering that would have been acceptable to them. Sean and Madeline have been vocal in the media about their needs and the remedies for their suffering, but we heard nothing in response to this from the government. Either the government believes that disability accommodations set out in law do not need to be upheld or it does not take its role to oversee MAID safeguards seriously. Sean and Madeline's suffering came from a social condition, not their medical conditions.

I cannot believe that was ever the intention of MAID—sanctioning the deaths of disabled people because they live in poverty—yet we see it happening. I ask that you recognize the safeguards are failing and that you support disabled lives and the Canada disability benefit bill to ensure it lifts all disabled people out of poverty. Implement wide reform to our care systems to give disabled people the care they want. Until these conditions are met, MAID eligibility must be restricted to those who are approaching the end of their life, where their intolerable suffering is due to their medical condition, not the societal conditions under which they are forced to live.

I finish with Madeline's words: “I'm trying really hard not to freak out...but that I'm facing death for something that can be managed is bloody ridiculous, and it makes me so angry. I die when I run out of money.”

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much, Ms. Hewitt.

Lastly, we have Mr. Adair.

You have the floor for five minutes.

[Bill Adair, Executive Director, Spinal Cord Injury Canada]

Thank you, Madam Chair.

I'm Bill Adair. I work for Spinal Cord Injury Canada, which was founded in 1945 by World War II veterans who came back home to a country that expected very little from them and who dismissed the idea that they would be shut away in convalescent homes.

Our founders fought in battles overseas and then back home to provide the proof that their lives are worth living. In fact, 13 of our founders received the Order of Canada because of what they did after the war. Apparently, 72 years later, people with spinal cord injuries still need to fight to prove that their lives are worth living. It's tiring fighting for existence, but here we are.

I have worked with our SCI federation for 33 of those 72 years. Our organizations across the country support people as they adjust, adapt and thrive while living with a spinal cord injury. I have fielded requests for support for half of my life. My experience as the past chief executive officer of Spinal Cord Injury Ontario and now as the executive director of Spinal Cord Injury Canada provides me with a distinct expertise to talk about MAID and its potential impact on people with spinal cord injuries.

I'm here to speak with you about two issues, which are the 90-day wait period and the lack of real choice for persons when they are offered MAID.

The 90-day wait period is arbitrary. There are very good reasons, especially related to people with spinal cord injuries, why this wait period should be longer. A recent study found that 50% of respondents with a spinal cord injury had suicidal ideation in the first two years post-injury. Another study found that after the first year post-injury, more than 70% of people rated their life equal to or better than their life pre-injury.

From my work, I know that it can take anywhere from several months to up to seven years or more for a person to mourn their loss and accept their new life. Rehabilitation, court battles, finding accessible housing and possible work retraining can take years. Sustaining a spinal cord injury is a huge life change. While laying in bed in acute care or in rehab, a person does not possibly have all the information needed to make a life or death decision. As you know, it takes time to think about all the options, listen to people's views, and understand what resources are available and what are not. A 90-day wait is not a safeguard for the 4,000 or more people with a new spinal cord injury in Canada each year.

Imagine the loss to our society if we allow our fellow citizens to make a impulsive, uninformed decisions during the early stages of rebuilding a life that is worth living. Which one of these people could have been our next Order of Canada recipient?

My second concern is that people do not have a real choice when they request MAID. When a person discusses MAID with a doctor, they should also be offered other choices such as home services, long-term care, basic living funds, suicide prevention, psychiatric services, and safe, accessible and affordable housing. These services are not offered or they're offered, but are not available because there's a wait list, they're too expensive or they're too far away. The person isn't really being offered a choice, are they? The person is in fact being denied a choice. It's MAID or nothing.

Many people with a disability suffer because of a lack of available services and being left to live in crushing poverty, not because of their disability. In turn, the lack of available services and a life in poverty kills hope and drives people to choose MAID to end their misery. This is not the Canada that any of us want.

Here's my list of proposed solutions: Extend the wait period if a person is not at the end of life. Implement the Canadian disability benefit now. Fund trained professionals from organizations to go into health care centres to provide peer support when someone requests MAID. Build accessible, affordable housing.

As parliamentarians, you have a responsibility to change this horrible situation and to prevent it. Please give my recommendations a sober second thought.

Thank you for listening and inviting me here.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Adair, and thank you to all of our witnesses.

We'll go into our first round of questions, and we'll begin with Mr. Cooper for five minutes.

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

Thank you, Madam Co-Chair.

Dr. Coelho, can you elaborate a little more on the case of the first patient you cited, who suffered from a stroke and was granted medical assistance in dying under the Bill C‑14 regime, despite not having a terminal diagnosis as required by law under Bill C‑14?

[Dr. Ramona Coelho]

Mr. Cooper, just to clarify, it was actually more recent than that, but should have fallen under track two under the Bill C‑7 regime.

This patient did not have any terminal comorbidities and was not dying from his stroke. As is normal custom when someone has a stroke and has difficulty swallowing, we progress their diet slowly to avoid aspiration—pneumonia and things like this—and he did not choke or aspirate before he died. The dietitian ordered a normal progression of meals. He was eating 1,300 calories a day, which is probably what I eat, and he ate his whole tray easily—every tray. And, it was temporary.

However, I guess this was beyond the scope of the MAID assessor's expertise, because he wasn't starving, but they decided that he wouldn't be able to survive on a diet as such, and therefore qualified him for track one so that he could die with no reflection period.

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

Thank you for that, Dr. Coelho.

Can you elaborate on the patient you were recently in contact with who watched the W5 program, and as you said, has now found MAID appealing?

[Dr. Ramona Coelho]

This is my own patient, whom I love very much, and I asked her permission to tell her story today. She actually said, as did every single contact in every story I shared, that she is willing to talk to this committee. I've also emailed the chairs with other stories that I couldn't fit in here. They want to share their stories about what happened. She wants to tell you that she is very worried about the poverty she will be thrown into if she can't go back to work and that she'd rather die than live in poverty.

I'd be happy to be connected with the clerk, or whomever, to give you all of these stories. They are all recent stories, including the ones I already sent to Madam Chair and Mr. Chair.

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

How much time do I have, Madam Chair?

[The Joint Chair, Hon. Yonah Martin]

You have two and a half minutes.

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

Okay.

Dr. Coelho, can you elaborate on the second patient who chose MAID on the basis of an incorrect diagnosis?

To split the time, Mr. Adair, can you talk a bit about some of the phone calls your organization has received in regard to MAID from persons who suffer from spinal cord injuries?

[Dr. Ramona Coelho]

Okay. I will try to be very, very quick.

I have actually reviewed this medical chart and met with the family myself. The family relates that there was severe humiliation that he endured [Technical difficulty--Editor]

[The Joint Chair, Hon. Yonah Martin]

Dr. Coelho, your sound is affected at this time.

[Dr. Ramona Coelho]

Oh, sorry. Is something wrong?

[The Joint Chair, Hon. Yonah Martin]

Yes. Would you begin again? Your sound cut out. I think we're having some technical difficulty.

After that, we'll get Mr. Adair to respond as well.

Go ahead, Dr. Coelho.

[Dr. Ramona Coelho]

Basically, I talked to the family. I reviewed the medical chart myself. He was being humiliated by staff. They would leave the windows open, complain when they had to change him. He couldn't get in touch with his family that often. He would go hungry when they cleared his food trays. In this context, he developed shortness of breath that wasn't comprehensively assessed. He would become so confused that his oxygen, when it slipped off his face...they had to cancel his second assessment.

The second assessor told the family that she would have to go off the first assessment. So he received MAID in a very sloppy fashion, without proper diagnosis. As I said, the family doctor was never consulted and the diagnosis was not confirmed in hospital or through collateral history taking.

[The Joint Chair, Hon. Yonah Martin]

Mr. Adair.

[Bill Adair]

There are multiple calls that come in to our organizations across the country. I'm happy to speak about two of them.

I had a phone call several weeks ago from a colleague who was representing a woman who is 17 years old. She was in intensive care and had a high-level spinal cord injury. She wanted to access MAID. Since then, our organization has been able to connect with the family and help them see that there is life after this initial insult of paralysis, and she has turned away from that. We're grateful for that, but the fact that a 17-year-old woman, who has enormous potential to contribute to our country, is even considering MAID is very problematic.

The other is a woman in her mid-30s who contacted me. She has multiple disabilities and has been looking for housing that would support her independence and her ability to return to work after the onset of a second disability after having a spinal-cord injury. After 10 years, her words, to paraphrase, were “I'm ready to throw in the towel. I cannot take this anymore. I want to lift myself out of poverty. I want to get a job, but I can't find a place to live that will support my independence.”

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Adair.

Next we have Mr. Maloney. You have the floor for five minutes.

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Thanks, Madam Joint Chair.

Thank you to all the witnesses for very compelling and helpful testimony. It was enlightening, too, I might add.

Dr. Coelho, I agree with what you just said. Nobody should ever have to.... The circumstances you described are appalling. I forget the language you used, but I agree with you. It sounds to me like, based on the facts that you presented, that this particular situation may have been more the result of poor quality care than the laws put in place, but that's just my interpretation.

My question really is.... I agree with you. Nobody's financial circumstances, because they're impoverished or have mental health issues or are disabled, should ever lead somebody to a situation where MAID is the option. Are there safeguards that can be put in place, in your opinion, that can protect against that?

I don't know if you've seen it or not, but there's an expert panel that released their findings last week, and they addressed some of these issues. I was looking for the specific recommendation while you were talking. I couldn't find it, but in there somewhere is the recommendation that there be a comprehensive process as part of the assessment to make sure that those aren't the circumstances giving rise to the request.

Is that possible, in your opinion?

[Dr. Ramona Coelho]

Thank you.

Thank you, Madam Chair, for the question.

First, to touch on what you were asking about that case with negligence, possible discrimination and a longer admission than they wanted or anticipated, I think it raises a really problematic issue. Abby Hoffman came to this committee and said that there are no cases, or hardly any cases, of non-compliance. It means that Health Canada is not able to capture the data correctly for safety and monitoring, and that really concerns me.

The second thing, about the expert panel—I reviewed the expert panel—is that it was actually for MAID for mental illness as a sole condition. The expert panel is very interesting. First of all, they never answered the question, “Can this be done for mental illness?”, considering that we have a lot of evidence that we have no prognosticators to know for sure if someone is irremediable—actually meeting the eligibility criteria for MAID—and if this is really a medical procedure.

Secondly, they offer 19 cautions. There are 19 things that they consider to be very dangerous—

[James Maloney, Liberal, Etobicoke—Lakeshore, ON]

Let me focus. Do you think there could be safeguards put in place to protect against the concerns you've raised? That's my real question.