Makayla Sault case reignites debate over a minor's right to refuse treatment

The death of Makayla Sault, the 11-year-old First Nation girl who was given the right to refuse treatment for leukemia, has again raised the question about when governments should be able to overrule family wishes in life-threatening medical cases.

When can government agencies intervene on behalf of a sick child?

Ethics of alternate medicine therapies

7 years ago
Duration 6:31
Interview with Arthur Schafer, director of the Centre for Professional and Applied Ethics at the University of Manitoba

The death of Makayla Sault, the 11-year-old First Nation girl who was given the right to refuse treatment for leukemia, has reignited the debate about when governments should be able to overrule family wishes in life-threatening medical cases.

Last March, Makayla was diagnosed with acute lymphoblastic leukemia (ALL) and authorities said she had a 75 per cent chance of survival if she underwent chemotherapy.

Makayla, whose family is from the New Credit First Nation near Caledonia, Ont., underwent 11 weeks of chemo at McMaster Children's Hospital in Hamilton, but eventually abandoned it while in remission to pursue alternative and traditional indigenous medicine.

When Makayla decided against continuing chemotherapy, the hospital referred her case to the Brant Children's Aid Society. But, after an investigation, it decided in May that Makayla was not a child in need of protection, that she was part of a loving family and that it would not apprehend her to return her to treatment.

Late last year, a judge rejected an application from a hospital that would have compelled child-welfare authorities to intervene in the case of another Ontario aboriginal girl whose family had also stopped her chemo in favour of traditional medicine. (The girl's name is protected by a publication ban.)

These related cases highlight some of the issues at play when a government agency or medical authorities consider intervening in situations involving very sick children whose families refuse treatment.

What are a parent's responsibilities when it comes to caring for a sick child?

A parent has the primary rights of decision-making for a child up to the age of 16.

And under the Canadian Criminal Code, it is an offense to fail to provide "the necessaries of life" to a person under your care, custody or control.

When can authorities step in?

According to Canadian common law, as well as provincial child-welfare statutes, the state not only has a right but a responsibility to intervene if a child is abused or neglected, or if a parent fails to provide the necessities of life, says Margaret Somerville, director of the Centre for Medicine, Ethics and Law at McGill University.

In a situation where a family is rejecting medical treatment that would likely save a child's life, Canadian courts have the inherent power to take the decision-making away from the parents and give it to somebody else, she says.

Ethicist Margaret Somerville, shown here being awarded an honorary degree by Ryerson University. ((CBC))

Somerville says courts sometimes give that power to the health-care professionals looking after the child, but often they give it to child welfare authorities, such as children's aid societies.

"Rarely these days will the court make the decision itself," says Somerville.

She says that in a recent case in Saskatchewan, courts empowered the provincial minister of health and social services to take action.

Why might someone refuse treatment for their child?

There have been a number of examples of parents who refused a specific treatment based on cultural, religious or philosophical grounds.

One example has been Jehovah's Witnesses, who refuse blood transfusions because they believe the Bible forbids them.

As the Makayla Sault case demonstrates, some in the aboriginal community would prefer to use traditional or alternative healing methods to treat diseases such as cancer.

Kenn Richard, the executive director of Native Child and Family Services of Toronto, told CBC News earlier that children's aid societies in Ontario are legally required to consider a First Nation child's background and culture.

He says that special consideration ensures the troubled history of First Nations' children in care is not repeated.​

Does the child have any say?

Courts will often take into account the wishes of mature children — who are deemed "competent minors" — who aren't old enough to be allowed to choose for themselves, says Nicholas Bala, a professor of family and children's law at Queen's University in Kingston, Ont.

But even so, he says the Supreme Court has ruled that the more serious the consequences of rejecting a given treatment, the less weight is given to that minor's views if they could lead to the child's death.

"We say 12- and 13-year-olds can make decisions about birth control and abortion, but that's different from rejecting [medical] treatment," he says.

Do courts usually rule in favour of compelling the family to agree to the prescribed treatment?

Usually, yes, but not always.

Bala says that generally speaking, the views of parents and their children "are not determinative" of a court's decision.

For example, in 2006, Manitoba courts empowered a doctor to give a 14-year-old Jehovah's Witness blood transfusions over the objections of the girl and her parents.

Bala says many legal experts were surprised by the decision in the case of the Ontario aboriginal girl, in which Judge Gethin Edward ruled that the girl's family had a "constitutionally protected right to pursue their traditional medicine."

Courts generally have a bias "in favour of life," Bala says, but will show leniency in cases where the prescribed treatment is overly severe and may not significantly improve the life expectancy of the child.

Somerville cites a Quebec case involving a child with cancer whose custodians — her mother and grandmother — had refused consent to give her a very invasive treatment that had only a very small chance of success, about five per cent, it was estimated.

"Probably, at best, it would have prolonged the child's life," says Somerville. "It wouldn't have cured the child, and there the court said the custodians could refuse the treatment for the child."