GRANTING A CHILD’S DEATH WISH
Panel’s suggestion makes issue of euthanasia even more divisive
The 12- year- old boy lay flat and still in his hospital bed. The slightest movement made the breathlessness worse. He was physically wasting away from the cancer that began in one foot before spreading throughout his body, and he could no longer sit even propped up by pillows.
He understood from the beginning his disease would kill him. He told his parents and doctors he did not want to become a “vegetable,” or sedated into a sleep from which he might never wake. And so when the morphine left him increasingly groggy and dazed, when he refused yet another pleural tap — in which a needle is inserted between the chest wall and the lungs to remove trapped fluid — he asked to be put to death, and in May 2005, he became the youngest reported child in the Netherlands to be granted death by lethal injection.
Last month, a Canadian advisory panel unnerved many when it boldly — some say recklessly — suggested allowing terminally ill but mentally capable children and mature minors the right to request doctor- assisted death. The provincial- territorial panel recommended access to an early death be based on competence, rather than age.
The recommendation comes as t he country’s politicians grapple with making euthanasia legal for adults, as the top court decreed last February. Given a year, the federal government has asked the court for a six- month extension, until August, to come up with a law.
But for doctors who care for terminally ill children, there is particular horror at the idea of euthanasia for children. They argue that when all hope for a cure is gone, virtually all pain and other symptoms can be managed to minimize suffering. In the rare cases where suffering becomes unbearable, they say, a child can be legally sedated and simply allowed to drift unconscious into death.
With palliative sedation, people can sleep until they die — a process that can take hours, but sometimes takes days. Euthanasia involves an injection of barbiturates that abruptly kills. Now some are asking that when every last option has been exhausted, and the only humane choice left is continuous sedation, is it ethical to deny mentally competent children what the law will soon grant their parents — the option of a less drawn- out death?
Belgium and the Netherlands are the only jurisdictions in the world that have made it legal to euthanize children. The Netherlands allows terminally ill children 12 and older to request assisted death. Last year, in a move that sparked protests and prayer vigils, Belgium legalized euthanasia for terminally ill children of any age who are experiencing constant and unbearable suffering, with the consent of parents and doctors.
“No doctor in the world, not even Belgium, wants to perform euthanasia on their patients,” says Dr. Jutte van der Werff Ten Bosch, a pediatric oncologist at Brussels University Hospital. But she says children as young as five can sometimes grasp the concept of death, and suffering, and “what the effect of wanting to die means — that it will be forever.”
“I feel the law should apply to them as well,” she says.
She once treated a young girl dying of lung cancer. What the doctors feared most happened in the end: The cancer bled into the pleural space around the girl’s lungs. “She was in a lot of pain for a long time — it was impossible to kill the pain. For the parents, it’s incredibly difficult to see your child suffering like that,” van der Werff Ten Bosch says.
Children at the end of life experience the same symptoms as dying adults — respiratory distress, muscle wasting, nausea and vomiting, fatigue and weakness, problems swallowing, anxiety and distress.
The difference, she says, is that their hearts tend to be stronger.
“With older patients, they’ve eaten lots, and they’ve smoked or drank their wine or beer, and if something really stressful happens, their hearts tend to give up,” van der Werff Ten Bosch says.
“The end of life when you have cancer might be soft and peaceful,” she says. “But it also might be very ugly.”
The youngest child to die by euthanasia in the Netherlands made it clear how he did, and did not, want to die.
From t he moment he was diagnosed with advanced rhabdomyosarcoma, a rare cancer of the muscle tissue, “it was already clear that the prognosis was poor,” according to a summary of his case compiled by the review committee overseeing the Dutch euthanasia law. The tumour spread rapidly to his lymph nodes, bone marrow and skeleton. He had chemotherapy and radiation, followed by more chemotherapy and a transplant procedure known as a stem cell rescue, but, by October 2004, it was clear further aggressive treatments were futile.
The child was moved to palliative care and put on morphine. Two pleural taps were performed, but the fluid just as quickly built up again. By May 2005, he was exhausted and bedridden, and experiencing severe dyspnea, which can feel like the terrifying sense of suffocating. He was admitted to hospital, and from that point discussed his wish for euthanasia repeatedly.
He did not want to die in his sleep, he told his parents and doctors. He wanted to remain fully conscious until the last moment of life.
Few children say they want to die. “Most of our fight is about kids that want to live — not most of our fight, all of our fight is about that, and how to do it with as minimal suffering as possible,” says Dr. Stephen Liben, director of the Montreal Children’s Hospital pediatric palliative care program.
“There aren’t these children that are asking to please die now. It never happens,” says Liben. “The last thing I need as a palliative care physician for children is a euthanasia law — the last thing.”
The law in Ontario and most other provinces already allows mature minors to make decisions about their own medical care, including withdrawing or withholding life- support. In addition, a report released last month by the University of Toronto Joint Centre for Bioethics agrees that some children facing horrible circumstances “have a wisdom that is beyond their chronological years.”
But determining competency is “fraught with uncertainty,” the U of T task force on physicianassisted death adds. Injecting a powerful dose of barbiturates into a person with the clear intent of stopping t heir breathing and heart is already such a profound and dramatic departure
for medicine, doctors first need clear rules, “experience and trust” dealing with requests from consenting adults before we can begin contemplating hastening the deaths of children, it says.
Autonomy is a treasured principle in the world of ethics, adds Dr. Barron Lerner of the New York U niversity Langone School of Medicine, and the argument could be made that “it’s their body, they’re a mature minor, they should get to decide.”
“Yes, it’s their body, but they are still a child,” Lerner says. “I think it will be challenging enough for doctors in Canada to make decisions with respect to dying adults. It would be even
The last thing I need as a palliative care physician for children is a euthanasia law — the last thing
harder to have children be the decision- makers in these cases as well.”
In the Netherlands, doctors ended the lives of five children between 2002 and 2014 — three 17- year- olds, one 16- year- old and the 12- year- old boy. All died from cancer. Under a practice known as the Groningen Protocol, the country also permits euthanasia of severely ill newborns with no chance of survival who are suffering unbearably, at the parents’ request.
Dutch pediatricians are watchi ng Belgium’s move to allow euthanasia for children of all ages closely. “It’s very interesting, and very promising,” said Dr. Eduard Verhagen, professor of pediatrics at Groningen University.
“Most children with a lifelimiting illness, before they have even entered the terminal phase, have made decisions about their treatment, and about their lives 30, 40 or 50 times,” he says.
“It is wrong we deny them the ultimate decision about what the end of their lives should look like based on calendar age. We don’t believe that’s fair.”
But Liben, of Montreal, says allowing competent children access to assisted dying is, “at best, completely unnecessary.”
“This would not be an extra tool for relieving suffering at all. It would only muddy the waters and make things more confusing,” he says.
Children cope with death the way adults do, he says — from complete denial to talking about their fears and hopes. One young boy in the ICU at Montreal Children’s Hospital is talking about wanting to leave things for his brother.
“He’s not talking about, ‘ I want to die.’ He doesn’t want to die. He wants to live, and he’s on a lot of life- support,” Liben says. “But he’s talking about legacy leaving — ‘ I just want to be sure my brother has this, in case something happens.’”
And for the rare times a child says “I can’t take it anymore” or “I just want to sleep all the time,” Liben says doctors “have a lot of powerful things we can to do to relieve their suffering.
“We can have them sleeping all the time if they want — we can use palliative sedation, a legal, moral and ethical procedure across the country,” he says.
Some argue it’s an artificial line — that when a person is near death, and suffering, what does it matter which method is used to help them die? But palliative care doctors say there is a huge leap between palliative sedation and euthanasia. With sedation, the intent is to reduce consciousness to ease suffering, they say, not speed the person’s death by actively trying to stop their breathing.
At the end, the Dutch boy was skin and bones. He had to pause for breath every few seconds. But he was lucid when a second doctor was called in on May 28, 2005, and confirmed there was no prospect of improvement and that the boy’s request to die was voluntary. His grieving parents granted their consent.
The child was euthanized, according to the official records, “with due medical care and attention” — first a powerful anesthetic to put him into a deep coma, followed by a second injection to paralyze the respiratory muscles, stopping his breathing and his heart.