Who’s to blame when everyone’s an expert?
Makayla Sault, the little girl from the New Credit First Nation near Brantford, Ont., who stopped chemotherapy, was by all accounts a lovely kid, smart and brave, and now she is dead, at 11.
J.J., another little girl whose name is protected by a court publication ban, is also 11 and aboriginal, from the Six Nations reserve not far from Makayla’s reserve.
But lest you imagine that the death of the first little girl will galvanize someone, somewhere, to take action in the case of the second, give your head a shake, please.
J.J. has the same cancer Makayla had — acute lymphoblastic leukemia — though the cure rate for hers is about 90 per cent, probably because Makayla had a rare version called Philadelphia chromosome positive, which made her prognosis less rosy.
Both cases made headlines last year when their families stopped chemotherapy at McMaster Children’s Hospital, in Makayla’s case, with warnings that “the wrath” of Canadian First Nations would be aroused if anyone forced her back into chemotherapy.
Makayla stopped treatment last spring, J.J. last August.
Makayla’s parents are both pastors in an evangelical Christian church, and so she was off to receive a traditional native treatment called “Ongwehowe Onongwatri: yo:” (about which virtually nothing is known, including at the Institute of Aboriginal Peoples’ Health, an arm of the Canadian Institutes of Health Research) and the power of Jesus, whom Makayla said had come to her hospital room one night and “told me that I am healed.”
As for J.J. — though her mother is a strong believer in traditional medicine — she was taken to what’s politely called an alternative cancer treatment facility in Florida’s West Palm Beach. The Hippocrates Health Institute is, as the CBC reported last fall, licensed as a “massage establishment” and whose website declares its goal “to assist people in taking responsibility for their lives and to help them internalize and actualize an existence free from premature aging, disease and needless pain.”
Makayla’s parents also took her there; the Hippocrates’ director gave a lecture at one of the reserves this past May.
According to the CBC report, the girls’ families paid about $18,000 each for Hippocrates’ “Life Transformation Program.” CBC obtained a video, showing the institute’s director saying “We’ve had more people reverse cancer than any institute in the history of health care” and that he teaches people to “heal themselves.”
In other words, the joint appears to have no relationship to anything that could be considered traditional aboriginal healing and its unlicensed director has a concomitant amount of credibility.
Though the cases are very alike, there were some key differences.
Makayala was so bright that despite her age, many of those who encountered her believed she was capable of making a decision on her health care. That may well be true, though it’s worth noting that she was a child, and likely deeply influenced by her parents, as are most kids.
J.J., as even Ontario Court Judge Gethin Edward ruled last November when McMaster was trying to force the local children’s aid society to act to get the little girl back into treatment, wasn’t the same sort of child.
As Judge Edward found, J.J. “lacked capacity to make such a life-and-death decision.” The child-welfare society, Brant Family and Children’s Services, urged the judge to dismiss the hospital’s application, but send the matter to the provincial Consent and Capacity Board.
In the end, the judge found the hospital was right — this was a child-protection issue and the matter was in the correct place — but found that the mother’s decision “to pursue traditional medicine for her daughter J.J. is her aboriginal right.”
Even assuming the judge was correct and that as J.J.’s substitute decision-maker the mother has the right to “pursue traditional medicine,” how does the Hippocrates Health Institute, where “comprehensive cancer wellness” treatments include a footbath, constitute traditional aboriginal medicine? No worries, though. No one but McMaster’s doctors was ever interested first, last and always in the health of the two girls.
Child-welfare agencies are reluctant to force aboriginal children into life-saving treatment and to interject themselves into messy and sad cases where genuinely loving parents, as the parents in these cases are, make uninformed health-care decisions. We are after all in the era where everyone’s ardent if dopey belief is every bit as good as a physician’s clinical judgment and experience. Courts are unwilling to investigate or put limits upon what is and isn’t “traditional medicine,” even as they give it the stamp of approval, and so anything goes.
According to the Jan. 19 edition of the Two Row Times, an aboriginal newspaper focused on Six Nations, Makayla suffered a stroke last Sunday morning.
The Sault family issued a statement to the paper, saying that the little girl “was on her way to wellness,” but the ravages of her 12 weeks on chemotherapy “did irreversible damage to her heart and major organs.
“This was the cause of the stroke,” the statement read.
The Ontario coroner’s office is, despite what its spokesperson told me Tuesday, investigating the death. She also said because the death wasn’t unexpected or sudden, and “the child was under care,” that an autopsy wasn’t mandated.
And autopsies are so invasive, and unnecessary, when everyone is a doctor and can pronounce upon cause.