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Girl Dies after Refusing Chemo

January 20, 2015 permalink

Makayla Sault, who last year refused chemo therapy for leukemia, has died. McMaster Children’s Hospital tried to get CAS to intervene, but Brant CAS refused, and the courts did not compel CAS to act. Expect this death to be the basis of a new power grab by CAS. To keep this story in one place, it is an addendum to Girl Wants Out of Chemo

Addendum: Contrary to expectations, Ontario's child advocate Irwin Elman is supportive of a child's right to control his own medical treatment.



Children can decide health treatment, advocate says

Makayla Sault
Makayla Sault
Image from YouTube video

Brant Family and Children's Services did the right thing in cases where two First Nations families decided to opt out of chemotherapy for their young children, says the Provincial Advocate for Children and Youth.

"I'm concerned that the discourse happening is about 'How can we let children have decisions about their health care?' and I want to make sure people know what the law says," said Irwin Elman, who is an official champion of children's rights.

"They have the right, like any adult, to make health decisions as long as they have capacity."

Elman said that those rights are often eroded by parents, foster systems and health-care professionals who sometimes want to leap over the part of the process where they are to involve and inform the patient about medication and procedures.

Instead of getting consent from kids, people tend to make decisions for them, he said.

In a statement released to the media, Elman said that every individual, regardless of age, has the right to consent or refuse treatment, as long as they can understand the treatment information and consequences.

Since the death of Makayla Sault last month, opinion has run high against the judicial and child welfare systems.

The 11-year-old New Credit girl, who had stopped chemotherapy treatments at her own request, and a parallel case of "J.J." a Six Nations girl, have become lightning rods for public outrage.

In the case of the Six Nations girl, who can't be named because of a court order, McMaster Children's Hospital applied to have Brant Family and Children's Services apprehend her so she could continue chemotherapy for her leukemia.

Elman said that, if a child is incapable of understanding treatment options, a parent can act as a substitute decision-maker.

Then if a doctor thinks the parent isn't acting in the child's best interest, the matter should go to the Consent and Capacity Board, not a court, he said.

"The unfortunate reality is that too often medical decisions are being made for young people without their direct involvement "¦ and, most importantly, without their consent."

Elman said that his office hears from many young people who were given no explanation for why they were being hospitalized or administered psychotropic drugs.

The advocate said one investigation found up to 49% of children in care of protection agencies are being given drugs, such as tranquillizers and Ritalin.

Lawyer Mark Handelman said he thinks the Brantford court case missed a critical point of law.

Representing the Brant Family and Child Services agency in the case, Handelman was the winning lawyer but he's still not happy.

"We got the result we sought but, because of the judge's decision, the law has been muddled.

"We don't have clarity of law as to how it impacts non-First Nations children and what's expected from a physician if they deem a child not capable."

Justice Gethin Edward said that pursuing traditional medicine was an "aboriginal right" protected by the Constitution for the Six Nations family. Handelman said the judge should have focused on the proper way to deem someone not capable.

"Capacity is issue specific. Someone can be capable of some decisions and incapable of others. A child may have the inability to understand information relevant to the decision or appreciate the consequences so you suss that out by addressing relevant questions to the child."

Handelman said doctors especially need to practise talking to kids about medical procedures.

"There's an old joke that if you agree with your doctor, you're capable and if you disagree, you're incapable. Without charting, without asking, without informing a child how to challenge a decision - all of which the law expects from every health professional - kids' rights are being ignored.

"I hope this case is a wakeup call."

For Andy Koster, executive director of the Brant Family and Children's Services, Elman's public statement of support has been a relief from the cries of outrage lobbed by columnists and bloggers.

"Our agency felt vindicated to some degree, although it's still tempered by what's happened to Makayla," said Koster.

"A child didn't make it, so we didn't feel any joy, but I'm glad he expressed himself."

Koster emphasized that the agency's decision came down to points of law.

"People are getting caught up in emotions. When we see a story like this we think of our own kids but we followed the law."

Koster said he attended Makayla's funeral and saw the great sadness in the community at her loss.

He said as far as he knows, the Six Nations girl is doing well.

"She has a doctor and is being seen at a children's hospital and we are providing support."


Children have a lot more rights than many know when it comes to their own health.

The Health Care Consent Act is silent when it comes to setting an age where kids can turn down medical procedures or medication.

The office of the Provincial Advocate for Children and Youth has produced a survival guide for young people and all those who treat them in the health-care system.

“You can make your own decision if you can understand the treatment information and what might happen if you take or don't take the treatment,” says the guide.

“And you can change your mind.”

According to the law, even those younger than 12 can make decisions about their health, including choosing alternative treatments, traditional medicine and culturally appropriate treatment.

No one – not social workers, CAS workers, parents or guardians or Youth Service Officers – can decide that you aren't able to make decisions. Only a doctor or other health care professional can. And they have to tell you that you're allowed to challenge that decision.

Irwin Elman, the Provincial Advocate for Children and Youth, says whether people like it or approve of it, that's the law.

But he wants to see additional ways of respectfully working with young patients to ensure they take responsibility for their health that will last a lifetime.

“If you develop this responsibility as a child, you're going to have health adults and them means less burden on society.

“All of us have some responsibility for our own health care, to take some of the burden off the health care system.”

To download a copy of the Ultimate Health Rights Survival Guide, go to

Source: Brantford Expositor