On Friday, the much-publicized case of J.J., a First Nations girl who refused chemotherapy in favour of "traditional medicine," was resolved amicably.
J.J., who is suffering from acute lymphoblastic leukemia (ALL), will undergo chemotherapy overseen by an oncologist. The chemo will be complemented by the care of a chief who practises traditional Haudenosaunee medicine: The two will work together as a team rather than at cross-purposes.
All the parties involved – the Ontario Court judge, the Attorney-General's Office, the Brant Family and Children's Services, McMaster Children's Hospital, the leaders of the Six Nations of the Grand River, and the lawyers for the family of J.J. – engaged in an orgy of self-congratulation at the outcome.
But they should all be ashamed that it took a prolonged dispute, an asinine court ruling that needed to be "amended," and the suffering of a child before common sense prevailed.
The question that begs to be asked is: Why did J.J.'s case end up in the courts in the first place? The law is a blunt instrument and the courts are the worst possible place to try and resolve emotional, heart-wrenching medical issues.
The case of J.J. is a striking example. The pre-teen was diagnosed with ALL in August, 2014. She began treatment and underwent 10 days of the planned 32-day course of chemotherapy before her parents rejected the "Western paradigm of medicine." The family turned instead to the Hippocrates Health Institute, a dubious "holistic healing centre" in Florida.
The child welfare agency, which should intervene when parents make decisions that are harmful to a child, refused to step in, essentially because it didn't want to pick a fight with the Six Nations band. So, the children's hospital went to court to compel treatment.
Ontario Court Justice Gethin Edward ruled that, because of her aboriginal status, J.J.'s mother had a constitutional right to refuse chemotherapy and pursue "traditional medicine" on the child's behalf. The judgment was widely condemned.
So, on Friday, at the urging of all counsel, the judge issued a "clarification" stating that, of course, the child's interests are paramount and not to be trumped by aboriginal rights. That this was not abundantly clear from the get-go is troubling, but at least Judge Edward mitigated the harm.
Above all, the case should serve as a reminder that in medicine, and in health care more generally, difficult (and sometimes impossible) decisions are common currency. We see these issues in the headlines almost daily:
• Should someone with no hope of recovery remain on life support?
• Should patients be treated with potentially lifesaving drugs or surgery when that intervention also poses a serious risk of harm?
• When patients are at the end-of-life stage and suffering, do they have a right to demand a hastened death?
• Can patients with dementia consent to sex?
• Can parents refuse vaccination for their children?
• At what age should a young person be able to make independent medical decisions? At 14, a teen can get birth control without a parent's permission; should she also be allowed to refuse care for a life-threatening eating disorder?
The ideal solution to these heart-wrenching ethical dilemmas rarely lies in the courts. Rather, how, when and why care is provided should be guided principally by clinical and ethical guidelines, and decisions should be determined jointly by patients and practitioners.
The same is true of correcting errors. Shaming and blaming serves little purpose. Mr. Justice Horace Krever, who headed the tainted blood inquiry, made that case eloquently when he called for a system of no-fault medical insurance for victims of medical error, combined with a culture that is conducive to preventing errors in the first place.
Ultimately, that's what J.J.'s case was all about – the shifting culture of medicine in which patients are demanding more of a say in their care. If there is one thing everyone can agree on it is that J.J.'s parents wanted (and continue to want) the best for her. They saw their child suffering while undergoing chemo and wanted it to stop. Obviously, their fears were not assuaged; they were not convinced that benefits outweighed risks.
The answer was not adversarial legal action, it was mediation, education and compassion.
J.J.'s case has reminded us, too, that medicine is often paternalistic. But if patients (and their families) want to be empowered, if they want to be judge and jury on care decisions, they must also be more responsible and selfless – especially when the health of a child hangs in the balance.
André Picard