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.
Recently attended a women’s full moon ritual and observed a similar problem. Every woman who spoke seemed to be talking about some man in her life who she needed to get out her head, to stop talking down to her, stop making her feel inadequate. Remember feeling something similar myself. Trouble is that most of these women seemed to feel that their right to be the boss of themselves rested on belief in a range of wacky ideas that empowered them by disempowering the ‘experts’. I remember this too. I didn’t trust what experts said until I had built up enough of a base of knowledge on my own to understand where expert knowledge came from and when an expert might be reliable and when he was talking through his hat. And experts do talk through their hats. R. Dawkins on feminism, anyone? How about the psychiatrist who decided autism was the fault of refrigerator mothers?
All the talk about sexism around here got me thinking about how it seems like the conversations I have about books, history, ideas, science, etc. are usually with men. With women, I tend to stick to food and children, unless I know them to be academics. You all got me wondering whether I have this kind of conversation with women and not the other because we are all busy enacting femininity at each other. What would happen if women could get together and talk about intellectual things on purpose (other than feminism- I know we can do that), like the Inklings or Olive Wendell Holmes group of friends, or any other number of male groups through out history. In a fit of optimism, I put this idea to the woman next to me, who had been complaining of only being allowed to talk about certain things. Alas, it turned out that what she wanted to be allowed to say was that space aliens were about to descend bringing world peace.
There is something else about this case that I’d like to point out.
Chemotherapy is not a easy route to go. While I’ve no doubt that it is the best hope she has for cure, I think this child should have the autonomy of making this decision for herself, in consultation with her parents and her doctors. I hope that what her mother is doing is her daughter’s wish even if the doctors would prefer she make a different choice. I can’t support the state intervening unless it is to make sure the decision is actually the child’s preference for her treatment. Intervening to make the child undergo something as arduous as chemotherapy seems a miscarriage of justice to me.
At age 11? There is a reason children usually aren’t given full decision-making powers: it’s because they’re not yet good at things like accurately weighing short term versus long term benefits.
If I’d been allowed to make the decisions as a child I never would have gotten vaccinated, for anything.
If she was my child, I would likely pressure her hard to get the chemo. But some things are really important to allow the individual involved autonomy to make the choice for themselves. I think this is one of them. Even at that young age, they are the person best able to know the sacrifices and whether or not they are worth it for the improvement in the chances of recovery.
I think that Beth makes a reasonable point.
I accept that a child is (definitionally) immature and therefore is in a poor position to make such an important determination (a life-or-death one in response to a clear and present danger).
More problematic is whether their autonomy is thereby necessarily best arrogated to their primary carers* or is overridden by the State is a problematic issue, since many adults** aren’t, either.
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* This status being an acknowledgement that of their incapability due to immaturity, and to which I agree.
** Whose primary carer is themselves, of course, but whose incapacity is generally due to wilful ignorance.
Sorry, Ophelia, but I don’t see these comments as particularly nuanced — in fact, I see a lot of excuses being made that would never be accepted if the same exculpatory arguments were put forward for Jehovah’s Witnesses or exorcism-happy fundamentalists.
I’l start with MyaR’s because this is the best of the comments. In fact, I would agree with almost all of it, especially on the need for cultural sensitivity, but then there’s…
Actually, we know nothing about it from the story published. We don’t even know that the parents were happy to start chemo or whether it was accepted grudgingly at first and they slowly turned against it, or whether it started with one family members’ permission that the rest of the family were unhappy with. We also don’t know if the family’s reason for rejecting it was that they were treated disrespectfully or if someone got in their ears and changed their minds. And even if they were disrespected (which is eminently possible; people get treated dismissively in hospitals all the time and not just from racism), I don’t see that this gives them the legal right to put their child at risk.
Again, you have absolutely no evidence that the hospital staff treated the family like idiots, and you must be aware from multiple lines of evidence that people make decisions for arbitrary reasons all the time, including important, life-saving/denying decisions. Including well-educated people with access to the best medical advice. Like Steve Jobs. What’s more, we can see that the mother is using fallacious reasoning because her big argument seems to be “I refuse to listen to people with medical training.”
Anthony K uses the same rhetorical trick:
Again, there is not a shred of evidence that this is anything like what happened in this case. This reads to me like the sort of general accusation that can be brought out to rebut any attempt to get people to look at evidence. A suspicion that is only strengthened by the follow-up:
So discussing evidence becomes “thrusting studies at people”? We do not know that this is how the hospital handled matters. There is absolutely nothing in the report to suggest it.
And if we have overwhelming evidence that this treatment turns survival rates from about 10% to now 90%, which we do, then saying “that’s OK, give your child a completely untested medicine and we think it’s important to your culture that you do this even if it kills her” (as per one of the judges) is about as close to “complete deference” as I can imagine.
Finally, quixote’s comment is very much a “Western medicine can be wrong, so it’s OK to ignore it” argument. Again, I agree fully with his skepticism about the way science works in practice and the importance of skepticism even towards accepted truths in science and medicine, but his examples are poor (willow bark was not just used by “old wives”, it was used throughout the ancient world, including the Mediterranean civilisations that seeded the West from the 5th century BC; and while it’s true that Western doctors were bleeding patients…so were pre-Columbian Native American medicine men), but more importantly it doesn’t matter which parts of the world used willow bark or blood-letting in the pre-scientific era; the important thing is the evidence (good for willow bark as it contains aspirin, probably the most studied drug in history, bad for blood-letting except in a small number of medical conditions). And in this case the evidence is overwhelmingly in favour of modern chemotherapy. So when quixote says:
…I want to know why xe didn’t actually take a look at the available evidence? It’s not particularly insightful, in my opinion, to take a stand on the need to weigh the evidence if the evidence is there, easy to access, and you have not taken the opportunity to do so before commenting. I’m sorry, but it is no more dogmatic to say that chemo improves child leukaemia survival from 10% to 90% than it is to say that vaccinations prevent measles or that cholera is caused by a bacterium.
I am not objecting to any of the anti-racist agendas in these comments. I agree fully with the need to engage oppressed minorities on respectful terms, especially those that had their cultures devastated by colonial expansion where their power structures and social decision-making traditions were disrupted. But this example strikes me as using First Nations status to deflect criticism of a terrible decision, with support from some very poorly thought-out judicial arguments. I fail to see how demonising the hospital staff without a shred of evidence is helpful. And I really fail to see how it helps any culture to allow parents to deny life-saving treatment to their children on spurious grounds. If anything, I’d argue that this is a kind of unintentional reverse racism — if the family were white the court would intervene, but it’s OK to let children die if they’re from an oppressed minority. I know that’s not the intention of the family or the judges, but that’s the outcome they’ve created.
Finally, I’d like to point out that chemotherapy is not the horrible torturous process in most people’s imaginations. That image many of us have in our heads is a based on chemotherapy as it was practised in the 1970s and earlier (and gets lots of movie and TV time due to its dramatic potential). Modern chemo is much more tolerable because we have better chemo agents, are better at working out doses for people, and have much better treatments for side effects like nausea. It’s still not pleasant, but I’ve seen lots of people go through chemo cycles with side effects that were well within their tolerance.
Just two points, cause I’m on my phone — probably more later. My point about treating people like they’re idiots was apparently unclear — it wasn’t directed at the medical staff, but at some of the commenters here.
Re: Jehovah’s Witnesses — my point would be the same, and it had literally nothing to do with making excuses for anyone. That frame implies that our goal is to identify who is to blame, and my goal has fuck-all to do with that. (Because it’s obvious who’s to blame. It’s not a useful observation to spend time on outside of a legal, I.e., potential criminal, context.) My goal is figuring out how to make it a better system, where we don’t condemn people for bad decisions and self-righteously walk away.
I agree with much of what Anthony K says, since I also work with Canadian First Nations and Inuit communities on health concerns.
And this sentence from MyaR hits an important nail right on the head:
Yes, yes, yes. There is a growing movement within medical practice to foster and promote “culturally competent healthcare”, and it’s relevant in just about every country in the world. Here is a quote from a recent United Nations report:
“Culturally-competent health practice must account for the influence of culture on attitudes, beliefs and behaviours… The relationship between culture and population health is complex. The delivery of primary health care at the community level is generally organised around predominant local cultural norms, but must also increasingly account for cultural diversity and the cultural characteristics of minority groups. ”
This does not mean assenting to the use of every spurious therapy or kowtowing to every belief system – it simply means being aware of the rights of indigenous peoples, understanding what their concerns and fears are, and how they see the world. It means not talking down to them. I’m not talking about the current case in Canada, because I don’t know the details. I’m speaking generally – there is a problem with how evidence is communicated across cultural divides, and it limits the delivery and uptake of effective interventions.
It’s worth noting that there is a long history of scientists from all disciplines entering local and indigenous communities for the purpose of detailed cultural, medical, environmental and social research, then leaving and never reporting the results of their work with the communities they studied. This still happens all too frequently. It makes people feel like guinea pigs, a resource to be examined – mentally, culturally, physically – but not worth communicating results to; in many cases it has impinged on their right to control over their own intellectual property linked to cultural heritage and traditional knowledge. I have heard this complaint repeatedly from aboriginal peoples, and frequently from Canadian First Nations communities, and it understandably is a bone of contention and source of distrust for many indigenous groups.
Again, I’m not saying that the current case demonstrates cultural incompetence – I don’t know anything about what happened beyond what I’ve just read on this blog. But there are barriers to providing effective evidence-based healthcare to distinct cultural groups that urgently need to be addressed.
I raised a point on PZ’s blog last year about what I saw as looming difficulties for a growing atheist / skeptic community (at least, those of us who are interested in social justice) with regard to addressing the rights and well-being of indigenous peoples. This is an example of what I meant: reconciling our desire to support the affirmed rights of indigenous peoples to maintain their traditional health practices one one hand, with our desire to push evidence-based intervention which we believe is in their best interest on the other.
Clarification – I meant to say that researchers often don’t report their results back to the communities they studied – they do of course report on their research, but usually in the scientific literature or to government agencies, but often not to the communities they studied.
There may be a lot of issues connected with this case, but I’m pretty sure the original post, was about a specific thing: the court made a bad decision.
@7, mudpuddles
The conflict here isn’t real, I think it’s a temporary illusion caused by uncertainty as to whether the health practices are useless, like faith healing, or actually more effective than that. If it’s the latter case, then there simply is no conflict, it’s not child neglect. If it’s the former case, then we simply can’t affirm such a thing as a right, and so again we don’t have a conflict.
And it’s possible that this uncertainty needs to be resolved before the court can make a decision that I would consider valid.
Hi brianpansky (#9), thanks for the comment.
With respect, I have been working in this area for most of my career, dealing with this constantly, and not under an illusion. In terms of the broader picture, not just an individual case, this conflict arises very frequently and is a major issue for people at intergovernmental agencies who’s work frequently challenges indigenous knowledge systems whilst they simultaneously try to protect those same systems. Part of the problem is that traditional knowledge systems can be deeply complex and intricately tied to sense of community, sense of self, sense of place and sense of identity, to the degree that altering individual elements can be exceptionally difficult and risky, even if necessary. If we aim to protect cultural integrity, then great care needs to be taken when chipping away at key elements of any culture. I’ve recently sat in a room with WHO staff agonising over this very problem with regard to guidance on traditional medicinal practice, much of which has significant public health value.
The Universal Declaration of Human Rights affirms the right of any and every person to practice their beliefs. The rights of indigenous peoples to hold their own belief systems, and pursue their traditional medicines and health practices, are further affirmed under the UN Declaration on the Rights of Indigenous Peoples.
Agreed, 100%. But that is not the difficulty. There is sometimes no scientific uncertainty that a particular belief or practice is unhelpful, and that a scientifically-validated intervention is a better option for someone’s health (and there are lots of cases of courts ignoring the science anyway). The problem is making sure we don’t always have to resort to legal avenues, and challenging worldviews – I think you and I would agree that if it comes down to health outcomes, particularly for a child, then this often absolutely has to be done. The questions is how to approach this in order to be successful over the long term in a manner that is socially just.
I understood all three commenters I quoted to be talking about the external discourse on this issue, as opposed to the doctor-patient/family dialogue. I understood them to be talking about the way we here (and perhaps we more generally – secularists, fans of science & reason, etc) talk about it.
Exactly. I’m not going to go back through all of chrislawson’s comment, as I think it’s based on a miscommunication around this. Lesson for me in ensuring I’m clear about my antecedents.
Ultimately, it’s a question of what do you do once you’ve identified a problem? Too often, we’re satisfied with pointing the finger (not that this isn’t valuable — you have to identify the problem and the cause before you can work on fixing it, and pretty much no problems of this nature can be fixed by one person, or even one group of people).
Too often, too, we’re satisfied with identifying the immediate cause (those people made a bad decision!) without trying to dig deeper, looking at what systemic, institutional, cultural, etc. causes led to them making that decision. There are long legacies of oppression and disenfranchisement that have tendrils lingering throughout our culture and institutions, even when we’ve managed to at least right some of the legal wrongs. But even those can be chipped away (and are being chipped away) if we’re not willing to continually ask ourselves if we can use our privilege and knowledge and intellectual abilities to increase humanity’s well-being. It’s too easy to declare ourselves “critical thinkers”* or “skeptics” or “good people” and Those People as “deluded” or “stupid” or whatever. Yes, critical thinking is, dare I say, critical for solving humanity’s problems. But recognizing that is not sufficient to the actual act, and none of us are universal paragons of it — it’s not possible to be.
[NB: following paragraph is all about me, and only tangentially related, at best.] Recognizing that people don’t really make arbitrary decisions about things like who to believe doesn’t mean they don’t make bad decisions. For example, at work I often come in conflict with a colleague, who belongs to a different organization. I back my disagreement with evidence, including citations to everything from IT, ISO, NIST, and other federal standards to academic research to practical experience. His has vague hand-waving about “how it’s done”. I have implemented an end-to-end system sucessfully doing what the presumed goal of our mutual project is. He does not. The decision-makers pretty much never go with my “side”. I’m pretty sure they don’t think they’re biased, and that they’re critically examining the arguments and evidence. They’re really examining his sex, PhD, and obfuscating language. (I have a lot of independent verification of this. It’s why I and some of my other female colleagues are seeking other employment.)
* In real-life communication from one of these people — “some people are just naturally better at critical thinking [and I am one of them! <–subtext]" about something they were incredibly wrong about, because they hadn't recognized that the white male experience is not, in fact, the default experience for all of humanity.
Oh, that was pretty terribly edited, and with no time to make it more coherent. Sorry, and I’ll try to find time to come back and fix it.
FWIW, I am a white, middle-class, male, USAan, and I’ve had experiences with medical people that have put me off of modern medicine. Not because I don’t believe that modern medice has a lot to offer, but because I don’t trust the practitioners. A lot of them are arrogant know-it-alls who see no reason to listen to their patients or to respect their needs or feelings and just want to do whatever medicine they want to do (and aren’t willing to accept that they might be wrong.) If you don’t unquestioningly agree to everything they say, you’re an idiot who needs to be bullied and lied to and conned into doing what they want. (A lot like some commenters at FTB.)
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I still use western medicine, but treat doctor’s recommendations with some skepticism, especially until I have enough experience with them to decide whether to trust them. I’ve been burned too often (though not as much as some people I know.) It’s not enough that the doctor says it’s the right treatment. I have to be confident that it’s the right treatment, too.
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I can well understand it if the parents of this girl suspected that the doctors were lying about the necessity and/or effectiveness of the treatments they were recommending, or just wrong. Not to mention things like the Tuskegee syphilis study and syphilis experiments in Guatemala.
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There’s also the tendency among a lot of people, including medical personnel, to disrespect children — and their suffering.
I apologise for misreading the intent of the comments. I think my mistake was in reading the comments as referring back to the specifics of the case when they were aimed at certain statements made about the case.
@11, mudpuddles
Thanks for the reply.
Could elaborate on how this:
isn’t a violation of rights then? I don’t really understand.