The question is complex and delicate, both legally and from a medical point of view. This is why parents are speaking out on behalf of their now deceased child to contribute to the debate.
Mike Schouten and Caroline Marcoux do not know each other, but two years ago, a few months apart, they went through the same ordeal. Each saw their 17-year-old son, suffering from bone cancer, succumb to the disease.
This mother and father are now fighting a very different fight. She campaigns for minors to have access to medical assistance in dying, while he is part of an organization that opposes it.
Should medical assistance in dying be extended to minors? For now, only Belgium and the Netherlands allow it. In Ottawa, the parliamentary committee looking into the matter opens the door to this possibility. Parents who have experienced the loss of a child bring their voice to the debate. Report by Valérie Gamache
In 2021, the diagnosis fell for Marcus Schouten: this teenager had bone cancer which quickly spread to the lungs. After deciding to end his treatments, he only lived for two months.
That’s when Mike Schouten talked about the death with his son. They discussed what would happen when they felt the end was near. If Marcus had been offered medical assistance in dying, how would he have taken the news? We’re sure he would have felt abandoned, a bit like being told his life wasn’t worth living anymore.
explain M. Schouten.
In the last few days before his passing, Marcus Shouten spent some time surrounded by his friends. His father Mike Shouten particularly cherishes this memory.
Photo: Mike Schouten
« When we don’t know the moment of his death, we don’t know either the experiences we have left to live. »
Mike Schouten remembers that Friday morning when his son entered the palliative care unit at Vancouver Children’s Hospital. Marcus thought that was the end. He was surrounded by his family. He bade us farewell
, he says. He and his wife spent the night with their son. He persevered, and the next morning he was still with us.
That day, he asked Marcus if he wanted to spend one last moment with his friends. They spent two hours together. Marcus told them it was time for him to leave but they had their lives ahead of them.
explains his father. It was a wonderful moment that wouldn’t have happened if Marcus had decided the night before that it was the right time to leave.
Caroline Marcoux has promised her son, Charles, to fight so that minors like him, if they wish, can have access to medical assistance in dying.
Photo: Caroline Marcoux
Caroline Marcoux would have liked her son to have a choice. Charles was 15 when he was diagnosed with cancer. After 18 months punctuated by treatments and operations, the disease returned with a vengeance in January 2021. It was a double recurrence. From there, we knew there was nothing left to do
says Ms. Marcoux.
Seven months later, Charles’ pain became unbearable, his mother recalls. In mid-July, that’s when he started panicking about death, panicking about when it was going to happen. That’s when he started talking about medical help [à mourir].
« He said: “I will leave when I want, as I want and peacefully, and I will sleep”. »
Charles could hardly leave his bed in his house in Saint-Prime, Lac-Saint-Jean.: “Mom, do something, I can’t take it anymore. Mom, when do we know when death is? When do we know it’s there? ” Then, he was afraid of being alone.”,”text”:”He said: “Mom, do something, I can’t take it anymore. Mom, when do we know it? when is death? When do you know it’s there?” Then, he was afraid of being alone.”}}”>He said: “Mom, do something, I can’t take it anymore. Mom, when do we know when is death? When do we know it’s there ?” Then he was afraid of being alone.
Charles finally decided to turn to the only option available to him: palliative sedation. He was therefore administered medication to relieve his suffering by rendering him unconscious until his death. If he could have had medical help, choose the moment, choose who he was with, too… When he left, the family wasn’t all there
recalls Caroline Marcoux.
Sensitive debate among pediatricians
Pediatrician in palliative care at the Soleil mother-child center in CHU from Quebec, Dr. Gabrielle Brodeur St-Jacques specifies from the outset that it is very rare for adolescents to explore the avenue of medical assistance in dying. So I predict that if we manage to authorize it for minors, it will be very isolated cases
, she argues. In the Netherlands, for example, where mature minors have access to medical assistance in dying, there were 13 cases where it was administered between 2002 and 2018.
Dr. Gabrielle Brodeur St-Jacques is a pediatrician in palliative care at the Soleil mother-child center of the CHU de Québec.
Photo : Radio-Canada / David Richard
But one thing is clear in the mind of this pediatrician: the legal age of 18 to have access to medical assistance in dying is quite arbitrary.
We know that this will particularly affect young people who are suffering from a chronic illness, who have this experiential experience that probably allows them to decide for themselves in an even more surprising way than some healthy adults.
explains Dr. Brodeur St-Jacques.
One thing, however, should be considered differently from adults, she said: eligibility criteria and safeguards. Since the end of life is no longer a mandatory criterion, I, [j’estime que] it brings a major downside. The end of life, for me, I believe that it must remain essential as access criteria
says the pediatrician.
From a legal point of view, medical lawyer Jean-François Leroux believes that the age criterion is discriminatory.
years and over can decide for themselves to stop certain care that is necessary to sustain life. Physicians must carry out this fitness assessment anyway. So it may be a mirage that it can be a difficulty in itself”,”text”:”Every day in Quebec right now, minors aged 14 and over can decide for themselves to stop certain care which are necessary to sustain life. Physicians must carry out this fitness assessment anyway. So maybe it’s a mirage that it can be a difficulty in itself”}}”>Every day right now in Quebec, minors aged 14 and over can decide for themselves to stop certain care that is necessary to maintain life. Physicians must carry out this fitness assessment anyway. So maybe it’s a mirage that it can be a difficulty in itself
pleads the lawyer, who advises the Quebec Association for the right to die with dignity.
Me Jean-François Leroux is a lawyer specializing in medical liability. He was co-prosecutor in the highly publicized Gladu-Truchon trial, two citizens who succeeded in invalidating the provisions of the Criminal Code which condition access to medical assistance in dying to the fact of being at the end of life.
Photo : Radio-Canada / David Richard
While Me Leroux would accept without hesitation to defend the cause of a minor who would like to have access to medical assistance in dying, Dr. Brodeur St-Jacques wonders how she would react if it were possible for mature minors and that one of his young patients demanded this recourse.
It remains to be clarified, but this desire to accompany them to the end will make me question myself, probably positively, to allow them, in compassion, to have access to the care to which they are entitled. I can’t imagine calling a colleague they don’t know. I would like to accompany them to the end with this
she concludes.
Mike Schouten does not hide it: his religious beliefs are at the center of his fight in memory of his son Marcus. We know that he died the way people have died for hundreds of years in this country, which is when the Creator decides.
For Caroline Marcoux, it is the fact of fighting to give others the right to choose that gives meaning to Charles’ death.