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What happens when a child refuses life-saving treatment?

What happens when an 11-year-old First Nations girl with cancer decides to stop chemotherapy and revert to traditional (non-Western) medicine? This blog provides an overview of an ongoing case in Ontario, and explains what happens when minors (and their parents) refuse life-saving medical treatment.

The Facts

Makayla Sault is an 11-year-old girl from Caledonia, Ontario with leukemia. She was treated with chemotherapy for nearly 3 months and experienced terrible side effects. Shedecided to revert to traditional Aboriginal treatments because she felt the chemotherapy was doing more harm than good.

Her parents supported the decision.

Situations involving refusals to undergo life-saving treatment are always complicated, but even more so when the patient is a child, the parents support the child, and the family is from a First Nations community.

Cases like this one can play out in a variety of ways.

The matter can be referred to the Children’s Aid Society

The Children’s Aid Society (“CAS”) can get involved in these kinds of cases because, under the Child and Family Services Act, a child is “in need of protection” if she “requires medical treatment to cure, prevent or alleviate physical harm or suffering and the child’s parent or the person having charge of the child does not provide, or refuses or is unavailable or unable to consent to, the treatment”. There is a duty to report children “in need of protection” and therefore the CAS must typically be notified if parents do not consent to life-saving treatment.  The CAS investigates and can apply to court with the ultimate result being that the CAS gets to make the medical decision in question.

Similar cases have occurred previously in Ontario, in particular, cases involving young adults of the Jehovah’s Witness faith who refuse to consent to blood transfusions (because it is against their religion).  In 2009 the Supreme Court of Canada heard one such case in which a 14-year-old from Manitoba refused a blood transfusion and her parents supported her decision. She was apprehended as a “child in need of protection” and a court order was sought to permit the transfusion. The trend in “mature minor” cases (as these are often called) is that CAS obtains the legal authority to consent to treatment, and the child is treated.

In this present case, McMaster Children’s Hospital in Hamilton, Ontario, referred the matter to the CAS.

CAS conveyed plans to work together with the family and their First Nations community to reach a mutually agreeable solution.  The First Nations community threatened to use force if necessary to prevent Makayla from being apprehended by CASIt was reported that an agreement was reached and “Makayla Sault will remain at home with her family and not be forced back into chemotherapy”.

The child could be “capable” and allowed to refuse treatment

One of the greatest challenges in cases involving minors is whether the patient is capable of making decisions that could result in the end of life. According to Ontario’s Health Care Consent Act, there is no age of capacity to make treatment decisions and everyone is presumed to be capable.

The word “capable” has a legal definition and means the person (adult or child) must have the ability to understand the information relevant to making the decision about the treatment (e.g. what chemotherapy is and does), and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of a decision (e.g. that without chemotherapy there is a greater probability of the individual dying). To determine that a patient is “incapable” is to deprive her of the liberty to decide what happens to her body and thus must be carefully considered.

It is possible for a person to be capable of some decisions and not others. For example, an adolescent may be capable of making treatment decisions related to a broken arm, but not necessarily her leukemia.

In these cases the child’s capacity is assessed and, if the child is found capable, he or she is entitled to refuse to consent to the continuation of chemotherapy – even if death is inevitable.

What becomes very difficult for health professionals is assessing whether a child truly has capacity, particularly if there are religious or cultural beliefs that affect the child’s refusal. Is the child able to exercise independent judgment? How do you know if a child is mature enough such that he or she can truly appreciate the consequences of his or her decision?

As stated by the Supreme Court of Canada, “there is no simple and straightforward means of definitively evaluating — or discounting — the myriad of subtle factors that may affect an adolescent’s ability to make mature, stable and independent choices in the medical treatment context”.

The child’s parents decide

Young children typically do not pass the test for capacity in complex situations involving end-of-life decisions. If a child’s care providers do not find her to be legally capable of consenting or refusing to consent to chemotherapy, it is her parents who have the legal right to decide.

However, parents cannot decide willy-nilly.

They are legally obligated to follow a set of rules that apply to substitute decision-makers. In this case, the girl’s parents must decide based on her best interests, which has a particular meaning under the law. One important criterion under “best interests” is whether her condition or well-being is likely to improve, remain the same or deteriorate without the treatment.

In this particular case it appears doctors think that she will deteriorate. It has been reported that Makayla’s doctors believe she would have a 75% chance of survival if she continued with chemotherapy, whereas it seems they are very doubtful of the effectiveness of traditional medicine.

The parents’ decision may be challenged at a legal tribunal

There is another avenue that does not appear to have been explored and is still available to the Hospital, even though the CAS did not find Makayla to be a “child in need of protection”.

If a child’s parents refuse to consent to treatment and the health practitioner(s) who proposed it thinks the parents are not complying with the applicable laws around decision-making, the practitioner may apply to a legal tribunal called the Consent and Capacity Boardfor a determination as to whether the parents complied with their legal obligations as the child’s substitute decision-makers.

This tribunal is like a mini-court that hears evidence from the parents, the doctors and the patient. If the Board finds that her parents have decided in accordance with her best interests, their decision prevails. If the Board finds that they did not, the Board may substitute its opinion for that of the substitute decision-maker or give them directions to follow. If the parents do not comply with the Board’s directions, they could lose their right to act as their daughter’s substitute decision-maker and another person would take over.

It does not appear the Hospital is pursuing this course of action.

Conclusion

Situations involving minors and treatment refusals are difficult for everyone involved.

We have provided legal advice to parents in similar situations who are certain they are doing what is best for their child, but are terrified that CAS will take their child away from them. At the same time, hospitals, health care providers and CAS typically want to do everything in their power to ensure children get the treatment they need. This can, in some ways, be easier if the parents are clearly neglecting their child. It is the situations involving loving parents that are far more difficult to resolve.

Parents who intend to refuse recommended treatment for their children should consider seeking legal advice to ensure they can navigate the system in a manner that will best protect their interests, uphold their wishes and mitigate the risk of having their children or decision-making powers taken away from them.

Lisa Feldstein Law Office provides advice to patients and family caregivers about end-of-life decisions, consent to treatment and substitute decision-making.

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