Medical Assistance in Dying Committee on Nov. 25th, 2022

[Kevin Liu]

No worries.

My comments this morning are drawn from the results of the project regarding youth perspectives on MAID and MAID for mature minors. Please note that neither I nor the participants in the study live with life-limiting illnesses and that we are from an otherwise general population.

Some pertinent results of the study include the following.

Young people are capable of understanding, articulating and empathising with elements of MAID. They're capable and keen to reflect on high-stakes matters and to contribute towards difficult decisions that may affect them.

Participants in our study expressed aspirations and concerns about how MAID should be implemented. They demonstrated a capacity and a willingness to explore and navigate, imagine and understand multiple dimensions of MAID. They demonstrated a marked sense of responsibility for others, expressing concerns for the bereaved and considerations for the interactions and the relationships between different stakeholders at the end of life.

They articulated clear understandings of what they felt might be at stake. They understood and expressed how each MAID case is nuanced, recognizing that all individuals are unique, with different values and motivations for MAID.

They explored their understandings of what they thought “maturity” meant in the context of MAID for mature minors and how maturity may or may not be relevant in extending MAID legislation to minors.

Further, they demonstrated an interest and desire to articulate the perspectives, and they seemed frustrated with their lack of opportunities to do so. They were aware that adults can exclude young people because they underestimate their abilities to contribute towards high-stakes decisions such as MAID and end-of-life issues generally. They spoke against this exclusion.

In conclusion, young people want to be meaningfully engaged with difficult conversations about MAID, and they're capable of doing so. I imagine that this is also the case for young people with life-limiting conditions, who may be eligible for MAID if it's extended to include mature minors.

The participants in our study genuinely appreciated the opportunity to speak on a matter they felt was important and in which they felt they had a stake yet never had an opportunity to discuss.

I'm extremely grateful that I was invited to testify as a witness today. I hope that there are more opportunities for other young people to provide their perspectives on this matter, particularly those who are minors, those with life-limiting illnesses, those who could be eligible for MAID, and other vulnerablized young people. Finding out what's important to these young people regarding MAID and end of life can help inform and ensure that future policies align with the interests of the people whom they are meant to serve.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much. You're representing your generation very effectively today, very articulately.

We will now go to Mr. and Mrs. Schouten. I believe you will share your time, so you will have the floor for five minutes.

Thank you very much for being here.

Also, we have two photographs that you have circulated to members of our committee, which include photos of your late son.

Mr. and Mrs. Schouten, the floor is yours.

[Mike Schouten, As an Individual]

We thank you very much for inviting us here to share our lived experience of walking alongside a child with a terminal illness. It's our hope that through our testimony today you'll receive some insight into how to deliberate and what to recommend to Parliament.

My wife will begin, and then I will conclude.

[Jennifer Schouten, As an Individual]

This is our dear son Markus. On February 26, 2021, he was diagnosed with Ewing sarcoma, an aggressive form of bone cancer. After 20 rounds of chemotherapy, 25 rounds of radiation and numerous surgeries, including the replacement of his entire upper right arm with an internal prosthetic, we made the decision with Markus and his doctors to end treatment for cure and focus on quality of life.

Markus’ care was then transferred from BC Children’s Hospital to Canuck Place Children’s Hospice. The palliative and hospice care Markus received at our home was focused on addressing his suffering and valuing his dignity. The doctors and nurses knew his days would be short, and their efforts ensured that the days he had left were lived well.

Markus wanted to die at home, surrounded by his family, but he also didn’t want to experience the intense pain and suffering that he knew would come as his lungs filled with tumours.

On what turned out to be his last Friday, nurse Shana assessed Markus and said, “His time is short.” She advised us to take the window we still had for Markus to be transported to Canuck Place Hospice in Vancouver. With the increased intensity of his care, we agreed. Our whole family was together at the hospice, and as we entered the evening, it appeared that Markus would last only a few more hours. As each of his siblings said goodnight to Markus, he told them he loved them and said, “See you in paradise.”

Mike and I didn’t sleep at all but took turns sitting beside Markus. The nurses maintained his medication, and Markus assured us that he was very comfortable and not in any pain. At one point he said to me, “This is how I hoped it would be.”

As dawn arrived, we realized that God had another day in store for Markus. Early that morning Markus’ friends arrived at the hospice, and together they cried, laughed and prayed. That afternoon both of Markus’ sets of grandparents also came to say goodbye. By early Sunday morning, Markus was non-responsive and his breathing had become a lot more shallow. Just before 2:30 that afternoon, Markus’ breathing slowed and with all of us around his bedside, he took his final, peaceful breaths.

[Mike Schouten]

Markus died just six short months ago, on May 29, 2022, only 15 months after his diagnosis. If he were here today, his appeal to you would be to not expand euthanasia to minors, for two reasons.

First, earlier this month, it was reported in the news that CAMAP, the Canadian Association of MAiD Assessors and Providers, is recommending that physicians have an obligation to bring up medical assistance in dying with patients who meet eligibility requirements.

As Jennifer just outlined, Markus met all the eligibility requirements. This means that if euthanasia is extended to minors, the day will come when families just like ours, with their dying children, will feel an obligation to end the suffering of their child by having a doctor euthanize him or her.

Dear committee members, we recommend against the expansion of euthanasia, because by giving some minors the right to request, you put all minors and their families in a position where they are obliged to consider it. If that had happened to Markus, the message he would have heard would have been clear: “We don't value your life; we don't think it is worth living, and if you want, we can end it for you.” It would have said to him, “We are giving up on you.”

Honourable members, we should never give up on our children.

The second reason we recommend you not extend MAID to minors is that by doing so, you eliminate unimaginably beautiful experiences.

When we went to the Canuck Place Children's Hospice, we didn’t know how long Markus would live. We hadn’t even wanted to go the hospice initially, but being there allowed us to embrace each moment we had with him, and him with us. If euthanasia becomes available to minors then that Friday night when we thought Markus was going to go, after we’d all had our time with him to say our goodbyes, it would have seemed like the thing to do, right? “It’s time,” the nurse would say. “It’s the compassionate thing to do. He doesn't have to suffer anymore.”

But then we would not have had Saturday, a most beautiful day shared with our son, our brother and our friend. We suffered much with Markus, and we miss him terribly, but Markus showed us how to find meaning in suffering, and he was thankful for each day that God gave to him.

Therefore, it is our heartfelt recommendation to this committee, on behalf of Markus and our family, that you not extend MAID to minors and instead focus on providing the necessary, robust palliative and hospice care resources to ensure the best quality of living, even when someone is dying.

Thank you.

[The Joint Chair, Hon. Yonah Martin]

Mr. and Mrs. Schouten, thank you very much for your courageous testimony this morning. I cannot imagine being in your shoes. The fact that you were able to share this testimony with us was very powerful.

We'll now go into our first round of questions.

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

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

Thank you, Madam Co-Chair.

Thank you to the witnesses.

In particular, thank you, Mr. and Mrs. Schouten, for your powerful and heartfelt testimony. I wish to express my condolences on your loss of your son.

I want to start with a general question. It sounds like your son Markus had no desire to die. He wanted to live.

However, we also heard testimony from a mother whose son was 16. MAID was not available to him. She gave powerful testimony before the committee that if he'd had the option of MAID, it would have resulted in his ending his suffering just a little sooner before he passed on.

What would you say in a situation like that? What would you say in response to that mother's very powerful testimony before this committee?

[Mike Schouten]

Thank you for the question.

I think we need to remember that perspective is everything. We also need to acknowledge the influence and ability of parents, of government and of health care providers to influence children in our country. If the perspective through suffering is that this suffering is going to get worse, and that unimaginable things might or could happen to you, and that your life might be very short, then that leads to despair. As Viktor Frankl once said, “Despair is suffering without meaning.”

If that's the perspective we're portraying to children who are suffering from terminal illness, then I can agree with you that this might lead to despair, which could include a request for medical assistance in dying, but then there's the perspective we experienced right from the very day Markus's oncologist told him there was nothing more they could do. When Markus asked him how long he had, the doctor gave him this answer: “We don't know. We're not going to focus on that. We're going to focus on you living every day that you have well. We're going to do everything we can to ensure that you can live every day you have well.”

That perspective does not lead to despair. That perspective does not lead to someone's request to ask a doctor to euthanize him or her.

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

Thank you for that.

Mr. Schouten, you mentioned in your testimony that the Canadian Association of MAiD Assessors and Providers has come up with a recommendation that medical doctors have an obligation to mention or bring up MAID when their patients meet the eligibility requirements. Can you speak to what impact you think that may have in terms of end-of-life care, and in particular to mature minors if MAID would be expanded to mature minors?

[Mike Schouten]

I think as we've seen in other demographics in our country, that obligation to consider is happening more and more. While we were at Canuck Place hospice, on more than one occasion we expressed gratitude that euthanasia for children was not legal in Canada and that it was not part of the suite of options the doctors and health care providers had in order to treat our son.

All of his treatment, all of his care, was focused on his living well. In the end, it wasn't day by day; it was hour by hour, moment by moment. When those resources are there, the request for someone to die and to ask a doctor to end that suffering by euthanizing them doesn't happen.

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

Right. Thank you for that.

Can you speak to Markus's experience in the end-of-life care he received and how that measures up against the palliative care and long-term care that most adults receive?

[Mike Schouten]

About six months before Markus was diagnosed, I had an uncle who was 69 and was diagnosed with stomach cancer. He did not have his first appointment with an oncologist until after he passed away.

Our doctors, through the child system, were always ahead of us. My uncle's wife had to run around all over the place trying to find treatment for him, trying to find the right medication, trying to address every symptom that came up.

In our case, through BC Children's Hospital and the Canuck Place Children's Hospice, they were always ahead of us, so much so that, as my wife said, that Friday morning, they knew this was the time. They knew that Markus wanted to stay home, but they said that if we had a window to get to Canuck Place Children's Hospice, this was now.

That made us able, as a family, to spend every living moment we had yet with Markus living well, enjoying each moment we had with him, sharing laughs, sharing memories, with him telling us over and over that he loved us. When he was in the hospice and said—as Jennifer indicated in her testimony—this is how I hoped it would be, that's how he hoped it would be, surrounded by his family, surrounded by health care professionals who didn't give up on him, who didn't say, “Your life is not worth living. You might want to request us to end it.” They considered his life worth living right up to the moment that he passed away at the hospice.

[The Joint Chair, Hon. Yonah Martin]

Thank you very much.

Next we're going to go to Monsieur Arseneault.

You have the floor for five minutes.

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

Thank you, Madam Chair.

I'll begin by thanking the witnesses here today.

Mr. and Mrs. Schouten, I'd like particularly to pay tribute to your courage. You've suffered the worst thing that can ever happen to parents. It happened to me somewhat indirectly, because my parents lost their daughter, meaning my sister. We held her hand until she drew her final breath. So I can only imagine what it's like and I saw the extent to which it could have destroyed my parents. You're very brave. It's a difficult ordeal, but there's always light at the end of the tunnel.

Mr. Liu, you told us that young people wanted to have their say and have people to listen to them. Could you briefly summarize the position of the young people you heard from and consulted on medical assistance in dying? Are they in favour of or opposed to medical assistance in dying for minors?

[Kevin Liu]

Hi. Thank you for your question.

It's a bit of a difficult question to answer because, like adults, young people also have a wide variety of perspectives, opinions and preferences for the topic. To say blankly that youth are in favour or that youth are not in favour is difficult. It is a difficult question to answer.

Importantly, the lack of a consensus doesn't mean that it's wishy-washy per se, just that there's nuance. That's more of a reason to elicit more youth perspectives, to understand more about their preferences, their visions, so that, again, we're able to advance policy in a way that is aligned with what's important to them.

However, generally in our focus groups, what we saw was that by the end of them, more participants were in favour of or sensitive to the benefits of medical assistance in dying and felt more comfortable with the ability of young people to make difficult decisions like this.

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

Thank you, Mr. Liu. I'll get back to our discussion if I have enough time.

Mr. and Mrs. Schouten, could you remind me how old your son was when he died?

[Mike Schouten]

When Markus was diagnosed with Ewing sarcoma, he was 17 years old, and when we buried him in the ground, he was 18 years old.

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

Thank you very much.

According to Carter v. Canada , which led us into the era of medical assistance in dying in Canada, people have to be adult within the meaning of the Criminal Code, which is 18 years of age.

We've heard many witnesses tell us that in other countries where medical assistance in dying is available, children, even though there are not many of them, who are extremely ill and who gained in maturity because of their illness and their lengthy stays in hospital, are allowed to request medical assistance in dying. These witnesses also said that the parents definitely had to be consulted, but that the final say was given to the child in matters of medical assistance in dying.

You've just had a painful experience. In any event, your son was about to turn 18 and become an adult. If medical assistance in dying were available to young people in Canada one day, at what age do you think it should be? Also, what safeguards do you think should be in place for a mature minor?

It's still not entirely clear to me.

[The Joint Chair, Hon. Yonah Martin]

Would you mind being brief in your response? There is less than a minute remaining.

[Mike Schouten]

Sure. I will just speak about the experience we had, because that's our lived experience.

Friday evening, Markus thought that he was going to go, and he called us all to his bedside and told us that he loved us. Saturday morning, when he was still with us and I said to him, “Markus, should I see if your buddies are able to come to the hospice?”—these friends that you see in the picture right in front of you—his eyes lit up, and he said “If you could, that would be so good.” He had 90 minutes of time with them, and he wouldn't have had that time if the decision for medical assistance in dying had happened.

He had that time because everyone around him, from his parents to his health care providers, valued his dignity, valued his life and did everything they could to ensure that he lived well even though he was dying, even though, over the course of two months, he drowned to death as his lungs filled with tumours.

There is not a much more terrible way you can go, but in our country—and our experience is proof of that—we can care for each other and give each other that dignity so that the request for MAID doesn't have to be there.

[The Joint Chair, Hon. Yonah Martin]

Next we'll go to—

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

I'd like to thank the witnesses.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

Mr. Thériault, you have five minutes at this time.

[Luc Thériault, Bloc, Montcalm, QC]

First, Mr. and Mrs. Schouten, I'd like to express my sincere condolences. I was deeply moved by your testimony.

I understand that you are probably still grieving, and hope that what you are experiencing now will ease your pain and help you through the mourning process.

There is a woman who, like you, testified before the committee recently. My colleague Mr. Cooper spoke about it. This was Ms. Caroline Marcoux, the mother of Charles Gignac. Her son was 17 years and nine months old when he died. He too had aggressive bone cancer. Two years to the day after the diagnosis, he died under palliative sedation in palliative care. He had fought the disease—he was tough—in all its phases, but never had any respite or remission and kept losing the battle.

In his memory, his mother decided to come and testify to tell us that free choice was important. For Charles, medical assistance in dying would have been his way of winning the war with the disease by preventing it from deciding when he was going to die. He wanted to choose the time to die peacefully, surrounded by his loved ones.

Before hearing your testimony, when I looked at the photographs of your son surrounded by his loved ones, I thought we might be about to hear something completely different from you. It's true that medical assistance in dying can also occur in a palliative care setting.

Mr. Liu's presentation got me thinking. I understand now that young people are just like adults, in that some are in favour of medical assistance in dying and others are against it. Isn't the role of the state precisely to guarantee the conditions needed to exercise free choice in such a personal human decision as one's own death and how it is to be experienced?

[Mike Schouten]

As I said earlier, I think perspective is everything. Two weeks before Markus passed away, someone gifted us with funds to use an Airbnb on Vancouver Island. We almost didn't make it because, on the way, we had to stop at BC Children's Hospital to empty Markus' lungs of two litres of liquid. That's how sick he was. However, because that precious time had been given to us, he wanted to use it. He recognized, as I said in my testimony, that when you unnaturally interrupt life through medical assistance in dying, you miss out on beautiful experiences that you can have.

It's one thing to ask healthy, able-bodied minors in our country “If you receive this diagnosis and life looked this terrible, would you want medical assistance in dying?” They say, “Yes, I think so.” It's an entirely other thing to actually experience it yourself or with your child and have available the palliative and hospice resources to care for that illness.