They have a brainstem that will keep their hearts beating, and their lungs breathing, but there is no expectation they would ever experience thoughts or emotions or higher brain functions, said Dr. David Lysecki, a pediatric palliative care specialist. With surgery and life-support, “we can sometimes keep their body alive for years. But that child would never be able to process the outside world in a cognizant way.”
Most parents, when faced with this tragic scenario, opt not to pursue aggressive treatments to prolong their child’s life. Without interventions, the child will die slowly, over the course of weeks.
“Some families ask, ‘If they’re going to die at the end of this anyway, maybe three weeks from now, and we don’t believe they’re going to have meaningful positive experiences between then and now, why must we all have to go through this period of waiting,’” said Lysecki, division head of palliative medicine in McMaster University’s department of pediatrics.
Lysecki will explain that hastening death is not legal in Canada for children. “I reassure them that we are, and will continue to do everything that we can to ensure that their child doesn’t suffer now or as things progress,” he said.
It took 39 seconds to reinvigorate debate over medical assistance in dying on Friday, when a member of Quebec’s college of physicians told a joint House of Commons committee studying the country’s MAID law that deliberately and actively ending the life of an infant less than one would be appropriate in cases of grave malformations and where life expectancy is “basically nil.”
Dr. Louis Roy was simply reciting a statement the college put out nearly a year ago, in December 2021. After reflecting on expanding eligibility criteria for MAID, the college announced it supported the idea of newborn euthanasia in cases with a very poor prognosis and “extreme suffering that cannot be relieved.” It also supported extending MAID to 14- to 17-year-olds and encouraged more public discussion about endorsing euthanasia for seniors “tired of living.”
A video clip of Roy’s testimony, circulated on social media, sparked outrage among advocacy groups. Some said it was blatant infanticide. “An infant cannot consent to their own death,” said Krista Carr, executive vice president of Inclusion Canada. “This isn’t MAID, it’s murder.”
A spokesperson for the college later clarified that no one was suggesting killing babies born with physical or intellectual disabilities.
“We are not at all talking about babies born with a handicap,” said Dr. Alain Naud, a family physician and clinical professor at Laval University who is one of the most vocal advocates of assisted dying in Quebec. “We are really talking about situations which, at birth, are incompatible with life in the short term — in a matter of days, weeks or months.”
Still, the Quebec proposal has bioethicists uneasy. “I’m not convinced we need this,” said University of Toronto professor Kerry Bowman. For Bowman, substitute consent changes everything, “because it’s not the wishes and values of the patient anymore. It’s the wishes and values of the parents.
“Look, I get it, that’s what we do, that’s what parents do (make decisions for children). But it’s not as clean a distinction, ethically, as it is when someone says, ‘I’ve been living with this pain for 15 years and I can’t do it anymore.’ That’s very different from guessing what you think a baby would want.”
There is also the implication that some severely ill newborns experience horrendous pain. “I have never seen that, especially with babies,” said Bowman, a clinical ethicist who has had years of frontline experience working with high-risk pregnancies involving malformed fetuses and babies born with extreme disability.
Serious disorders or deformities are often diagnosed in utero, before birth, during routine ultrasounds. “This being Canada, parents have the option to terminate a pregnancy for any reason, and when fetuses are seen to have massive malformity, and that information is given to parents, in many cases, though not always, they may choose to terminate the pregnancy,” Bowman said.
Other conditions are the consequence of premature birth.
When babies are born with a grim prognosis, “most of the battles are the parent saying, ‘We want everything done, we’re waiting for a miracle,’ even though the baby has had four or five massive cerebral bleeds, which, as you can imagine creates a terrible prognosis,” Bowman said.
In other cases, life support, including artificial nutrition and hydration, is withdrawn or withheld soon after birth, and the baby dies a natural death.
You can always induce constant coma to treat suffering. But what is the use of constant coma for a child?
Though rare, some babies are born with major defects of the heart, lungs, intestines or liver. Some are born missing kidneys, or with organs that have developed outside the body.
Naud pointed to the story of a Quebec baby born with a rare bowel disorder who died two weeks after birth, and whose parents had pleaded for doctors to end his life. The family told Radio-Canada they were given two options instead: continuous care until the child died a natural death, which would take upwards of 50 days, or hasten death by stopping feeding. “We don’t do that to our animals, let them starve, but we do that to our babies,” the child’s mother said. “You saw him there, that he was in pain, even on the morphine.”
Doctors in Canada have reported that “conversations are occurring with parents,” and that specific and explicit requests for MAID have come from parents involving very young children.
The Quebec college of doctors is holding out the Netherlands’ Groningen Protocol as an “avenue” for Canada to explore. Published in the New England Journal of Medicine in 2005, the protocol sets out eligibility criteria, guidelines and a reporting system for euthanasia of severely ill newborns and infants “for whom there is no hope of improvement” and with presumably unbearable suffering.
The protocol was developed amid concerns doctors were performing, and not reporting, newborn euthanasia. The aim, in part, was to prevent “uncontrolled and unjustified euthanasia” — to find out who were the children being euthanized, who is doing it and why.
According to anonymous surveys, an average of three cases per year of newborn euthanasia were performed by Dutch doctors before the protocol was adopted by the Dutch government in 2007. In the 15 years since legalization, “we’ve had only two cases so far,” said Dr. Eduard Verhagen, who wrote the protocol. “So, an enormous drop in numbers.”
Two things happened: The Netherlands introduced free prenatal ultrasounds at 20 weeks’ gestation, scans that can detect severe congenital malformations, and, by setting out legal criteria and a review process for neonatal euthanasia, the Groningen Protocol “may have left Dutch physicians with less room to hasten death,” researchers reported.
The two cases since 2007 involved a child with disease that causes progressive deterioration of the brain, and a child with a severe case of a skin disease called epidermolysis bullosa, or EB. “Your skin doesn’t stick to your body,” Verhagen said. The children have severe pain and severe feeding difficulties, because the esophagus is involved. “The suffering is clear to everyone who treats the child. In the severest cases these children die after weeks or months of suffering.”
“You can always induce constant coma to treat suffering,” Verhagen said. “But what is the use of constant coma for a child? For many parents that is not a life worth living.”
Doctors can take away consciousness, if need be, but Lysecki said, “it’s rare that we need to go to that extent.”
“We can take away suffering.”
Babies can’t say when they’re feeling pain, but they express it in obvious ways — crying, irritability, restlessness, grimacing. Children with neurological conditions may have different symptoms, like back arching or seizures. “We look for all those signs,” Lysecki said.
The question has come up whether infants can suffer when feeding is stopped. In most cases the babies’ gastrointestinal systems aren’t functioning properly, Lysecki said. “Trying to force it to do something that it is not good at doing can actually bring about more symptoms.”
“In many scenarios, what we actually see, even in the first few hours, long before the effects of dehydration or decreased calories become manifest, what we often see is a real calming of symptoms of discomfort,” he said.
Many families faced with a devastating diagnosis before birth choose to carry the fetus to term, providing a “hospice in the womb,” Lysecki said. “There is life, there is intrauterine life, and there are memories to be made, and many families that we work with make beautiful and enjoyable memories as a family,” he said.
“It’s not what they wished for, but given the circumstances, they’re accepting of that.”