Via several thoughtful and informed comments.
By quixote:
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.
By MyaR:
‘Tradition’ and ‘culture’ trump knowledge and the value of human life.
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.
Cultures and religions have no value when real human lives are at stake.
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.)
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.
‘Tradition’ and ‘culture’ trump knowledge and the value of human life. And this horseshit is staggeringly common among people who THINK they’re ‘progressive.’
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.