Doctor talks about the difficulty of patients refusing treatment

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TORONTO – Cancer patients refusing treatment, as was the case with 11-year-old Makayla Sault who died Monday, is not that rare among adults in Ontario.

Patients refuse treatments all the time, and as long as they’re “capable” to make that decision, they have every right to refuse.

But usually, the benefits and harms of therapy are closely balanced.  For example, in end-stage lung cancer, certain chemotherapies can extend life by about six months, but the quality of the patient’s life will be terrible – with constant nausea, vomiting, diarrhea, and pain.

Refusing treatment is also a very individualized choice – I’ve had patients refuse chemo, but I’ve had other patients who will do anything and everything to fight for every extra day of life.

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But where it gets trickier is when therapies are clearly life saving with little or no harm, and the patient still refuses them. This has happened with a Jehovah’s Witness, who had life-threatening blood loss and refused a blood transfusion on religious grounds.

Sault’s story made national headlines in 2014 when her parents refused treatment in favour of indigenous medicine.

She had acute lymphoblastic leukemia (ALL), which is the most common form of cancer in kids.  As a result of new chemotherapies developed in the last 20 years, more than 85 per cent of kids survive more than five years after diagnosis.

Initially kids will get three or four strong drugs for about four weeks, which eliminates the cancer in over 95 per cent of kids, and then we give consolidation therapy with milder chemo to reduce the chance of the cancer coming back.

Sault got through three months of chemo, and complained of a lot of nausea, vomiting, weakness, and weight loss.  Most kids tolerate those side effects in favor of surviving the cancer.

Based on the facts that we know right, it’s very likely she would still be alive if she had continued with treatment.

The province’s Children Aid Society chose not to intervene after her family refused treatment in favour of alternative medicine.

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When minors refuse treatment it is a tricky situation.

When people refuse things because of their belief system, as long as they understand the consequences, they have the right to refuse. But when it’s a minor, things are much more complicated because parents have a legal responsibility to make decisions that are in the child’s best interests.

However, society has a responsibility to protect children when their parents are being negligent and child services steps in all sorts of cases of negligent behaviour.  Some would argue that withholding a life saving therapy is being very negligent.

But the legal precedents are mixed too – the supreme court has previously enforced therapy against a parent’s wishes when it was clearly life saving, but on the other hand the Ontario court recently upheld the wishes of the parents of another First Nation girl in terms of refusing chemotherapy.  This is something that’s really tough as a doctor because you know there’s something you can do to save this person’s life, but there’s nothing you can do to convince them to take it.

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