Boy extubated after Quebec court battle is going home, breathing on his own

A six-year-old boy who was at the centre of a court case will be going home from Ste-Justine Hospital on Monday, about two months after a judge ruled that doctors could remove his breathing tube despite his parents' objections.

The child, whose identity is protected due to a publication ban, had been in a coma after nearly drowning last June.

His family and a group of their friends gathered in front of the hospital in the morning to "thank God for his miraculous," recovery, his mother said. "God gave my son his life back."

She also said she feels much "gratitude" towards the medical personnel at the hospital, even though there were some difficult conversations with them because she was "a mother in a painful situation."

"They were there for my son," she said.

After he was extubated on Feb. 16 the boy began breathing on his own and his family said his condition has continued to improve. They added he will continue to receive the care required by his medical "state," at home.

Speaking to reporters, his father explained that his son doesn't speak, "but he reacts, we see when he hears our voice."

His mother described how on the day of the accident they were convinced their son had died because "when he was pulled from the pool he showed no signs of life."

After some resuscitation manoeuvers, she said, there were some faint vital signs, but they were told he would not make it through the night.

The boy did survive but remained in a coma and with a breathing tube in place while a battle about how to treat him made its way through the justice system.

At issue was whether or not the young patient should have his breathing tube removed permanently.

Court documents revealed that the boy had suffered irreversible brain damage, according to his medical team. Still, doctors at the children's hospital said they believed the child would be able to breathe on his own and wanted to remove him from the machine assisting him.

The parents however did not want him extubated - not because they wanted the boy to remain on a ventilator permanently, they explained to CTV News through their lawyer Patrick Menard in December, but because they wanted the hospital to re-intubate the boy if something went wrong.

The hospital argued in court, however, that the child should receive end-of-life care if he stops breathing because the risks associated with intubation outweigh the expected benefits.

On Jan. 18, Quebec's Court of Appeal ruled that Ste-Justine could permanently remove the breathing tube, affirming a Superior Court ruling.

That medical procedure took place about a month later and "he breathed very well, and on his own," his mother said.

 On Monday, Menard said that even though the family lost the case they are very happy their son survived and do understand the arguments the hospital put forward. He said that the boy's mother even has medical training.

"My clients have often been portrayed as being disconnected from the medical reality and nothing could be further from the truth. They are very aware of their child's medical condition and are following it very closely," Menard said.

'QUALITY OF LIFE VERSUS LIFE'

The case involving the young boy appears to be settled but the ethical questions it raised are not new. On the contrary, health professionals, hospitals, patients and families grapple with them every day - only less publicly.

Dr. Eugene Bereza, a clinical ethicist at the MUHC, has studied, taught and helped set policy on these types of delicate matters for decades involving patients and situations of all kinds.

While he can't speak directly about the Ste-Justine case, Bereza said that when he heard about the story, three particular and common ethical conundrums came to mind.

The first was "are we there to do everything we can to maintain life as long as possible," Bereza said in an interview.

There's a tension between those who hang on to the notion of life at all costs, he explained, and those who prioritize the quality of life.

"We're a multi-cultural society with many different kinds of beliefs and perspectives," he said, explaining that it's a challenge, especially for the medical profession, at a time when they are able to keep a dead person's bodily functions "alive" for example, so organs can be transplanted.

"So, quality of life versus life is still a question that's controversial," said Bereza.

WHO GETS THE FINAL SAY?

It used to be that only doctors had the sole authority to make medical decisions for their patients.

"Thankfully those days of medical paternalism are pretty well behind us and we've come to that point in society where we say well, it's your life you get to decide what you want or how you want it done," said Bereza.

Some wonder however if the pendulum has swung too far in one direction, the ethicist said, with some patients and families believing they can ask and receive whatever treatment they want or expect.

"That's simply not the case. Physicians and other health care professionals are bound by their code of ethics and we're not supposed to be offering or doing things which are not beneficial, that cause more harm than good," he said.

'DISTRIBUTIVE JUSTICE'

Bereza describes the third topic known as 'distributive justice' or equity and access to care, as "very sensitive and very tough."

"All of us watching the news every day are painfully aware of the limits to our system not just with COVID but with everything else that's going on and we know, we just know that people are suffering for sure and possibly dying because they don't have access to care."

But as difficult as it is to reconcile, Bereza said resources are finite and no health system can give everything to everybody.

"So the question becomes should we be offering care that is very expensive, and I don't just mean dollars and cents, but also resources, all kinds of resources when we know or are pretty sure the outcome is going to be very poor?"

"Especially if it's at the cost of others where we might have a much better outcome - but those people don't even get access," he said.

When it comes to determining when it's right to stop medical care, unequivocal answers do not exist, he said.

"We have some good ideas but we're not quite there yet."

With files from The Canadian Press.