From the National Post:
For Laurie Hill, resident of Canada’s largest aboriginal community, it’s just wrong to suggest that modern medicine is the only way to treat cancer and other serious diseases.
She stands firmly behind the Six Nations neighbours who took their 11-year-old daughter with leukemia out of chemotherapy, and are treating her with traditional, but unproven, native methods and other alternative health-care instead.
“Unproven” is a bit of a euphemism. Surely it’s more a matter of having abundant reasons to think traditional methods and alternative health-care aren’t effective against leukemia.
“There’s a fear of [aboriginal remedies] or denial of it. If things can’t be quantified or qualified, to them it’s irrelevant,” said Ms. Hill, as she shopped at Ancestral Voices Healing Centre Thursday. “Who are they [doctors] to say she will make it with their treatments. Just because they have a degree, that makes them more knowledgeable?”
Well…yes, probably. On this particular subject, if they have the relevant degree, then yes, that does – other things being equal – make them more knowledgeable. It’s possible that Laurie Hill’s neighbors are equally knowledgeable thanks to self-education, but it’s not terribly likely. For one thing, few people want to go to all the trouble of getting a medical education if they’re not going to get a degree.
Also, I bet the doctors aren’t saying she will make it with their treatments; I bet they’re saying her chances of making it are much better with their treatments than without them. And who they are to say that is people who know something about the stats.
As an extraordinary court case in nearby Brantford moved toward an end, a lawyer for McMaster Children’s Hospital argued that child-welfare authorities should have used their power to require the young woman to stay in treatment. With chemo, childhood leukemia now has a survival rate in the range of 90%, and remains a likely death sentence without it, experts say.
But Justice Gethin Edward of the Ontario Court of Justice suggested physicians essentially want to “impose our world view on First Nation culture.” The idea of a cancer treatment being judged on the basis of statistics that quantify patients’ five-year survival rate is “completely foreign” to aboriginal ways, he said.
Oh please. That’s insulting. It assumes that people can’t learn anything new.
“Even if we say there is not one child who has been cured of acute lymphoblastic leukemia by traditional methods, is that a reason to invoke child protection?” asked Justice Edward, noting that the girl’s mother believes she is doing what is best for her daughter.
Yes, yes it is. Of course it is. You know what else is? We can say there is not one child who has survived being locked in a basement with no water or food for a month, and that that is indeed a reason to invoke child protection if a child is being held in a basement with no water or food. If a child has meningitis and the parents want to pray over her instead of taking her to a hospital, that is a reason to invoke child protection. Yes.
“Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to be treated with chemotherapy and to survive for that culture to have value.”
What?
The judge said the culture will still have value, so let the child die.
Wow.
There is also an issue of medical consent, but the child is 11, and if her parents have been telling her the traditional “treatments” are just as good, she’s probably not in a position to make an informed decision.
Back at Six Nations, meanwhile, Ancestral Voices employee Hayley Doxtater said aboriginal remedies are becoming increasingly popular. She pointed to a cancer treatment — a collection of herbs including slippery elm and turkey rhubarb root — that she said one customer has repeatedly traveled an hour from Toronto to buy for a sick friend.
“We have people come in here who are so happy that something works,” she said. “They’ll say ‘That stuff is amazing.’ “
Ah, the one hour drive evidence that the treatment is effective.
Having a lethal or damaging sense of cultural identity isn’t exactly rare or confined to any particular culture but it sure as hell makes a contribution to differential outcomes. I would be really interesting to know how much of a contribution, and how it’s brought about in practical terms. In this case, I expect there’s a meme of suspicion against medicine, and another of self-esteem and empowerment linked with traditional practices. I bet it works not unlike the anti-vax movement.
In this situation, it really doesn’t have much to do with who they are or what degree they have. What matters is the science they quote.
‘Tradition’ and ‘culture’ trump knowledge and the value of human life. And this horseshit is staggeringly common among people who THINK they’re ‘progressive.’
Childhood leukemia is one of the big recent success stories of clinical medicine. The girl’s chances would definitely be better in the hospital. About 90% better.
But.
I’m a biologist. I’ve worked with scientists all my adult life. We’re human. Which means we’re only one tiny smidgen less susceptible to the Old Boy Net than your average curmudgeon in the street. Which means scientists are just as capable of ignoring the obvious in favor of dogma as anyone else.
Just one example. Plants with some kind of pharmacological activity are on the order of 1% in the Amazon rainforest. For plants in native pharamcopoeias that rises to 30%. So when Merck spent millions of dollars inventorying the Amazon for potential new drugs they started with plants used in the local ethnomedicine, right? No, because those people wear feathers. They started with a brute force inventory because that seemed more “scientific.” (An ethnobotanist at NY Botanical Garden tried to show them the more useful path, but I don’t know how that worked out.)
In the good old days, aspirin in willow bark was used for fever by old wives. Real doctors at the time used leeches. The Europeans were ostracizing lepers when the tribes in the Burmese rainforest were using chaulmoogra to cure it. Etc., etc., etc.
I am NOT saying you’re wrong in this particular case. What I’m trying to say is that a less dogmatic (omg, skeptical?) approach would be better. Just because something does not come out of the medical establishment doesn’t mean it’s wrong. (Ack. I hope y’all can work your way through all those negatives.) Just because something comes out of aboriginal medicine doesn’t mean it’s wrong either. It’s the *evidence* that matters.
I predict a dead child.
Cultures and religions have no value when real human lives are at stake.
Well, it’s what we’ve been doing to native and aboriginal peoples for centuries. Which also plays into this particular scenario — what reasons do they have to trust that the 90% is real? When they know their traditional medicine practitioners are part of their community and care about them, specifically, but the hospital medical staff don’t know them and don’t understand their culture. And there are plenty of cultural differences that don’t matter in terms of physical, emotional, mental well-being, but those have been (sometimes systematically) stomped on by OUR culture. That kind of systematic denigration skews your ability to assess evidence presented by a component of that very system.
BUT. These are arguments for treating families (whatever their cultural background) with sensitivity, finding a way to provide the information they need to make actual informed decisions, ensuring that staff have explicit training in how to treat people from non-dominant culture respectfully, providing reasonable accommodation for cultural practices, and, if necessary, bringing in child welfare authorities if it is deemed medically necessary for the child’s well-being. And no, culture shouldn’t trump life-saving medicine for children, and this justice made a terrible decision. (Adults can do as they wish, although hopefully with decent information.)
In short — I suspect the family, as people, were NOT treated respectfully, and I’m not talking about their beliefs. After all, they did start the chemo and did not immediately reject it.
Well, no, but people (because what are cultures and religions without people?) do. And from a purely pragmatic perspective (i.e., trying to save the most lives) you have to take culture into account. When a child has a potentially fatal illness, the family if also part of the treatment, and we recognize this very well when the child is from the dominant culture. (I’ve been part of that family. The family’s beliefs and culture are often accommodated and integrated into the treatment as much as the staff can.)
@7…You just infantalized that entire community when you said “what reason do they have to trust that the 90% is real?”
As if they don’t speak English, read it, and are incapable of understanding the evidence that is collected in medical journals, in various cancer society information sheets, and on and on an on.
Please stop doing that. They’re just as capable of understanding the science as you are.
Kevin, I am not infantilizing. Yes, they are capable, BUT there is a cultural dynamic going on, and saying “well, they need to just listen better and read more science” isn’t going to fix that. There are legitimate reasons for them to feel that they’re not going to be treated fairly, and that they’re going to be lied to, because OUR institutions have historically been doing that to them for centuries. Which is why I said that yes, child protective services should’ve been allowed to step in and make sure appropriate medical care is provided.
If the cultural dynamics at play aren’t taken into consideration, you just end up with the same thing we’ve had for centuries — “native people are stupid and have a culture that is inferior in every way that it is different from ours”. And that justice was the one infantilizing, not me.
My main point — treating people who make these incredibly bad decisions as if they’re just idiots is a PROBLEM. No one makes decisions for arbitrary reasons, and if you want to improve the way people analyze problems and consider their potential courses of action, you need to understand why they are making the decisions they are making. And when you’re talking about cultural practices, you have to take the cultural dynamics between the relevant cultures into consideration. I’m more interested in talking about why people may distrust what medical staff tell them than in condemning them for the decision they made.
I think we are all in agreement that the justice made a terrible decision, so what else is there to say? Quite a lot, if we want to find ways to stop these sorts of decisions from being made in the future.
Well why do white people reject medical care in favour of prayer?
People are assuming this is a First Nations issue, but do First Nations people reject science-based medical care at a higher rate than any other people?
This is an issue with assigning value to culture — ANY culture. The judge, the parents, the writer of the article, they’re all guilty of thinking that culture trumps a child’s right to not die horribly from a relatively curable disease.
So, all these First Nations culture defenders have refused to buy cars and trucks, right? Their homes are made of tree bark and heated only with buffalo chip fires, right? They only wear clothing made out of animal skins or cloth woven themselves, right? They refuse to own computers, smart phones, TVs, and electric lights, right?
‘Cuz owning an item from white, European culture just because it does its function well is not the point, maintaining your original culture must be paramount, right?
Yawn.
As someone who actually works with First Nations communities with health concerns, specifically cancer, it’s frustrating to deal with the resistance to what’s sometimes considered ‘white’ medicine and knowledge. Especially so because I’m government, and for reasons now completely lost to white history, First Nations people in Canada tend not to trust the government. Weird, I know. I mean, the last residential school in Canada closed in 1996. Ancient history.
Nonetheless, we’ve found strange resistance to barking numbers and rates at communities (and not just First Nations ones; lay people of all backgrounds, though they are perfectly capable of reading scientific literature, tend not to do so as often as might be helpful. Again, it’s mystifying.)
So the situation is unfortunately complex, and not really amenable, in my experience, with the new atheist/skeptic tendency to yell at everyone until they become scientifically literate.
What seems to have been successful, is lowering barriers to entry in medicine and related fields for First Nations people, so that they’re able to bridge some of those cultural gaps. And let them take the lead. For instance, there’s a semi-formal policy of guidance around aboriginal data even as it’s used for epidemiological purposes, called OCAP (ownership, control, access, and possession), which is often summarized as ‘Nothing about us, without us’, where ‘us’ refers to aboriginal Canadians. That concept is developed by aboriginal people, and we respect it. In turn, they’re happy to give us data.
Because the reality is that the relationship between aboriginal and non-aboriginal Canadians is still fraught with tension, racism, suspicion, and distrust. That’s not solved by thrusting studies at people, nor by the backassward idea that paying credence to concepts of traditional knowledge (credence not being the same as complete deference) used by historically and currently oppressed people to empower themselves and their communities is ‘infantilizing’.
So I know, I’m one of those FAKE PROGRESSIVES john the drunkard likes to rail against, but I this stuff is part of my job, and I know what seems to work, and I know what sure as hell hasn’t.
I’ll let you know when the next meeting of treaty chiefs is happening. You tell ’em all how they’re not doing Indian right.
See how well that works.
I’m not defending the justice’s decision here either. But I know some of the issues that are involved.
Great comments from quixote and Mya and Anthony. Point taken. Also, I agree – my intention, at least, was to be snide about the judge rather than the parents.
And the US has nothing to boast of in this area – there are many states where refusal of medical treatment for children for religious reasons is protected by law – and children with easily curable diseases die in agony.
The question is not “Cultural Rights”, or the right of adults to choose their medical treatments, or the most culturally sensitive approach to Aboriginal health, but the duty of care parents have towards their children under the laws of a secular liberal democratic state. If the parents had been members of some Western religious cult who refused conventional treatment for one of their terminally ill children, what would the judges’s decision have been?
This is a human rights issue.
You mean a population which hadn’t been systematically decimated, children removed from their parents and raised in residential schools by nuns (some of whom are now only a few years older than me) because aboriginals were deemed incapable of raising them right (ie Canadian and Christian) and who still face widespread discrimination in Canadian society such that they’re still calling on the government to investigate disappearances of hundreds of aboriginal women?
Different, probably.
‘Colorblindness’ is stupid and harmful.
Well, and also, as I just mentioned, in the US doing that is actually protected by law in many states.
I know I’m being combative, and I’m sorry about that. I get it. When I produce cancer rates or counts for communities and the results are looked at askance because of people feel they have ‘a different way of knowing’, I’m irked. It’s not a different way of counting. But disease is not culturally neutral.
But my department deals with cancer, and we’ll bring small gifts of tobacco or meat when we meet with aboriginal communities. Because it gets us a seat at the table, and that’s a better outcome than being shut out.