French culture and medicine
November 4, 2016 7:32 AM   Subscribe

I have multiple myeloma, which generally is considered an incurable cancer, though some people stay in remission for decades. I am in the US. My doctor tells me that, once people are in remission, American doctors tend to put them on low-dose maintenance chemo for life, while French doctors, using the exact same data, have concluded that maintenance therapy is appropriate for a year, but after that, it has too negative an impact on quality of life for the benefits to be worth it. What gives?

Please only respond to this question if you have actual in-depth knowledge of French culture. I was in Paris once for three days, have read a few books about living in France, and have the general stereotypical idea that French people value quality of life more, and I'd rather not hear from people like me.
So aside from the stereotypes (which if you really know and think they're accurate especially pertaining to medicine, do share), what else might be feeding into this? One thing I'll note is that, at the dosage I'm taking now to get into remission, this medicine (Revlimid) costs $11,000 a month (fortunately, I have great insurance through my employer, but I worry about what happens when I retire). Do finances contribute to the difference? Relationships between doctors and pharmaceutical companies? Anything else you can think of?

I knew a Swiss woman who became pregnant in the US, but then moved back to Switzerland before her baby was born. When she told her Swiss doctor all of the tests that American doctors had insisted were absolutely essential, he asked her, "How perfect does your baby have to be?" She ended up feeling that the American doctors had put her into a panic about what could go wrong. Anecdotes such as that one would be interesting to me as well.

My reason for asking this question is that I might end up concluding that I don't want to stay on maintenance chemo forever.
posted by FencingGal to Health & Fitness (15 answers total) 4 users marked this as a favorite
My layman's understanding:
American doctors can do as many tests/as much treatment as they want - they bill the insurance for it. They can do as much as they want (within reason) and not care how much it costs.
If the medical system is universal/state-funded, the doctors will be encouraged to only carry out cost-effective tests/treatment because they know if they spend too much their budget will run out. They will only prescribe treatment if it's "worth it". For example, see the UK NHS's National Institute for Health and Care Excellence (NICE) and their "quality-adjusted life years".
posted by EndsOfInvention at 7:55 AM on November 4, 2016

Do finances contribute to the difference? Relationships between doctors and pharmaceutical companies? Anything else you can think of?

Yes, yes, and yes. Effective government control of pricing on both doctors' sides and on pharmaceuticals means that there is very little incentive (though not inexistent) to oversell. I'm simplifying so that I don't have to write a book, but essentially, while doctors can charge what they want, reimbursements are capped, effectively meaning that most doctors charge at or a little above the reimbursement cap. Pharmaceuticals have to go through evaluation to be eligible for reimbursement, and then which amount they'll be reimbursed. The procedure is usually pretty thorough – medicines that don't have proven benefits won't be reimbursed. So, if this maintenance chemo hasn't been proven to have a benefit after a certain point, indeed, it won't be reimbursed, and thus likely won't be prescribed after that point either. Now, you can ask for it anyway, and there are probably doctors who recommend it anyway, although they and the pharmacist would also have to tell you that you'll be paying for it after that point.

That you're framing this as a question about culture makes me really sad for the discourse around healthcare in the States. Healthcare isn't cultural, it's a human right. Yes, one could argue that calling it a human right is cultural, but once you get to that level you could also argue that calling ourselves "human" is cultural.

When she told her Swiss doctor all of the tests that American doctors had insisted were absolutely essential, he asked her, "How perfect does your baby have to be?"

One of the many benefits of socialized medicine is that it obliges a level of study and efficiency of treatment that is swept under the rug when medicine/healthcare are treated like any other capitalist product. Because government/social resources are limited, exams and treatments must have proven benefits. They can be minor! After all, we're still reimbursed for ibuprofen and aspirin when they're prescribed. However, things like cough syrup were once reimbursed, and no longer are because their effectiveness was shown to be nil. Likewise, recent studies have shown that past a certain number of exams (and depending on pregnancy risks of course), the benefits to mothers become nil, and can even start taking a psychological toll. So they reduced the number of required prenatal exams. Ditto for post-natal exams and treatments. You may have heard that in France, women are reimbursed for postpartum physical therapy. This is because the benefits are proven.

Finally: "while French doctors, using the exact same data" is kind of a smokescreen, though I doubt your doctor realizes it. You can use the same data for very different purposes. If US medical providers and pharmaceuticals realized they could make a lot of money off it, there you go. Meanwhile French medical providers and government oversight orgs realized the benefits weren't worth the costs, because of their goals.
posted by fraula at 7:58 AM on November 4, 2016 [27 favorites]

I imagine it comes down to the assessment of risk and litigiousness of the two cultures. American doctors know that if they are brought to trial for malpractice, they need to demonstrate that they have done everything possible. Risk, in this case, refers to the doctor's risk, not yours.

France is somewhat less litigious (and see also the responsibility to manage costs like EndsOfInvention describes) and doctors may choose to make different decisions based on a lesser fear of being sued.
posted by Liesl at 7:59 AM on November 4, 2016 [2 favorites]

Attitudes about healthcare are absolutely cultural, though! It's a fascinating subject.

US culture around healthcare tends to emphasize length of life over quality of life, to minimize risk (again, even at the expense of quality of life), and to maximize the amount of information available to the patient and the provider (sometimes without regard for whether the information is actually useful). Yeah, it's partly about litigiousness and drug companies but it's also partly just about American culture, the cult of the individual, blah blah blah.

And pregnancy and parenting culture is a whole other subset of the phenomenon. The stuff pregnant women are supposed to give up in the US!
posted by mskyle at 8:31 AM on November 4, 2016 [4 favorites]

Along with cultural differences and the abovementioned economic incentives which have a huge impact on medical decision making, also keep in mind that while some medical treatments have very strong evidence for or against them that makes the choice clear, most medical treatments are not so clearly or unequivically supported by evidence to leave no room for interpretation.

Said a different way, this lifelong chemo you describe is probably weakly supported by limited evidence. Therefore, no one actually knows for sure if it is "worth it" with certainty. Therefore, individual doctors along with nation-level policy makers can reasonably come to different conclusions about the treatment. And there is no meaningful way to know who is "right".

Therefore, you are in the difficult position of having to make your own choice, based on limited medical knowledge and probably limited research on the topic.

In general, the whole idea of informed consent in medicine is at all levels very much complicated by these specific types of issues.
posted by latkes at 8:42 AM on November 4, 2016 [9 favorites]

Yes, it's also possible to look into how it's treated in other English-speaking countries, for instance Australia.

Regarding culture, I was in no way denying it, but instead placing healthcare at a fundamental level in which as human beings, we all require healthcare. That it is an individual choice is clear everywhere around the world, not just the US... however the US does not in fact remove systemic barriers to healthcare, it instead raises barriers where none are necessary. That these differences would be cast as "cultural" and not "unhindered capitalism" is what I find sad, as it effectively hampers understanding of and thus potential improvements of the US healthcare system. (Reminder: I'm American, I lived in the US 20 years.) Life expectancy is a perfect example: if length of life were in fact valued more than other factors, then why is US life expectancy lower than 30 other countries? France is 9th in that list.
posted by fraula at 9:01 AM on November 4, 2016 [9 favorites]

Not French but it may be relevant because of the differences in US medical culture.

Having moved to the US from Australia I can second that doctors in the US seem a lot more willing to just prescribe something or to order a bunch of tests because they can. I've had more xrays, Cat Scans & MRI's since moving to the US 8 years ago than I had in the 40 years previous living in Australia.

When I've questioned the doctors in the USA about the need for the tests they've pretty much uniformly replied it was "to be sure", my interpretation of which was we're covering our arse in case you sue us.
posted by wwax at 9:12 AM on November 4, 2016 [2 favorites]

You may find this podcast of interest.
posted by latkes at 9:39 AM on November 4, 2016

Thanks everyone. Don't want to threadsit, but a few quick notes. References to other non-US cultures are fine, especially specific to multiple myeloma treatment (thanks fraula). I mostly just didn't want the thread cluttered with lots of generalities about French people's love of food. Also, not sure about US doctors covering their asses (though it's certainly my experience of US healthcare). The potential risks of the maintenance chemo can be quite serious and include increased risks of secondary cancers. Another treatment I'm considering is stem cell transplant, which most doctors everywhere seem to recommend (including my doctor - though she says she won't be alarmed if I decide against it), but everyone seems to be glossing over the risk of dying from the transplant (I've seen estimates of mortality from 1% to 8% - but it's confusing because the major university transplant center I'd be going to reports 30% mortality in the first year, which has been classified as "expected" for a center of that type). I've seen one doctor come right out and say that one advantage to a stem cell transplant is it's cheaper than long-term chemo, though US doctors tend to combine the two. Stem cell transplant also seems to increase the risk of secondary cancers. Needless to say, trying to make these decisions is terrifying. As latkes notes, the data are not that impressive either way. Another complication is that the chemo that really works has only been available since 2006 and there just hasn't been time for long-term studies of people receiving the treatment I'm on.
posted by FencingGal at 9:41 AM on November 4, 2016 [1 favorite]

So, I'm not an oncologist (and definitely not your oncologist) but I think the issue here is less likely to be concern about litigation and more about legitimate uncertainties in the data combined with somewhat different cultural and financial priorities.

I took a very brief look at the evidence for lenalidomide (Revlimid) maintenance therapy. From what I gather, maintenance therapy is associated with an increase in time without progression of disease, but the data is a little less clear about whether it actually prolongs peoples' lives. One big study was inconclusive; a study using pooled data suggested that about 69% of people on maintenance therapy vs 60% of people without it were still alive at 4 years, but the data weren't entirely conclusive. And the risk of complications was not negligible--about 8% of people had to stop due to adverse effects.

So my guess is that in the absence of a clear consensus, the approach is something like: US--it looks like there might be a benefit to overall survival, so continue maintenance treatment in the absence of a compelling reason not to. France--it's not clear that there is definitely a benefit, so don't continue maintenance treatment in the absence of a compelling reason to continue.

As a (non-oncologist) physician in the US, I would take strong issue with fraula's contention that US physicians somehow do not pay any attention to studies of efficacy or the efficient use of medicine. One of the criteria I am personally judged on and that I'm supposed to grade my residents on is the cost-effectiveness of my practice, and my experience has been that oncologists tend to be acutely aware of the latest research. That said, the interpretation and application of those studies will always be done in particular cultural settings, and it is clear that the US system leans toward more treatment rather than less in a number of different areas, and that the potential for litigation over bad outcomes and the lack of incentives for physicians to control costs play a part as well.

I know that these decisions (not even getting in to the stem cell issue) are difficult to grapple with and you should be congratulated on approaching this so thoughtfully. I wish you the best.
posted by The Elusive Architeuthis at 11:08 AM on November 4, 2016 [16 favorites]

Lynn Payer wrote a book that might give you some insight: Medicine and Culture: Varieties of Treatment in the United States, England, West Germany and France.
"Medical care, she found, is strongly influenced by cultural norms and values ingrained over hundreds of years. The differences can show up in the types and quantities of drugs doctors prescribe, the kinds and numbers of operations performed, even what blood pressure levels are thought to require treatment.” [from her NYT obit.]
The book’s specifics are a little out of date as she wrote it almost 30 years ago, but as the underlying cultural currents are of long duration its insights are still valid.
posted by Quinbus Flestrin at 11:27 AM on November 4, 2016 [2 favorites]

Needless to say, trying to make these decisions is terrifying.

I'm also a cancer patient, although with a rare form of appendix cancer. You need to find a group of other patients with your cancer and talk to them about what therapies they've tried and choices they've made. I found my appendix cancer group on Facebook through one of the organizations for my rare type of cancer. I don't know where to direct you specifically, but if you do some searching you'll definitely find groups out there. Having people all over the world who can talk about their treatments and how they're working out for them is enormously helpful.
posted by MsMolly at 11:33 AM on November 4, 2016 [2 favorites]

Because government/social resources are limited, exams and treatments must have proven benefits. They can be minor! After all, we're still reimbursed for ibuprofen and aspirin when they're prescribed. However, things like cough syrup were once reimbursed, and no longer are because their effectiveness was shown to be nil.

The difference between the US and countries with socialized healthcare is not that in the latter treatments must have proven benefits, but that treatments must have proven benefits that outweigh their societal cost. There are a great many treatments and services that have proven benefits to the individual that outweigh the expected harm to the individual -- and are thus FDA approved in the US -- but unavailable in other countries (outside of the private marketplace) because they are judged to be too expensive to society relative to the benefit they provide to the individual.

As The Elusive Architeuthis described, US medical culture is actually really quite concerned with efficacy and practicing evidence-based medicine, as well as continually challenging and refining ideas of what practices are truly supported by evidence. I can't speak specifically to the culture of oncology in France, but such work is very much a Thing in oncology in the US.
posted by telegraph at 11:37 AM on November 4, 2016 [5 favorites]

I don't know if this is directly relevant to your case, but I do have an acquaintance who is an American living in France, and we have a close mutual friend who's an American doctor. It's come up in conversation with them that French medical attitudes may be more paternalistic than American ones, and it looks like there's at least some academic work that supports this. In the case of the acquaintance, she felt that rather than providing her information about her treatment options and allowing her to make an informed decision about undergoing a procedure, French doctors just told her what to do and asked her to sign the paperwork, and when she asked about what the potential risks of the procedure were, she was told not to worry about it. It may be that American doctors are more willing to accede to what the patient wants, and that patients are more likely to choose to continue the treatment if given the option.

This article from the New York Times may be relevant:

"Doctors in France have long held what, by American standards, might seem unthinkable discretion to make end-of-life choices for people in their care.

For patients unable to communicate, such decisions fall legally to the physician, who may withdraw treatment or administer care that will end a patient’s life so long as the stated intent is to relieve that patient’s suffering, and not to kill. The opinions of family members and fellow doctors must be heard, the law states, but by no means obeyed.

That physicians wield such expansive powers is a peculiarity born of France’s paternalistic bent, of a culture of deference to hierarchy and expertise, doctors and social scientists say."
posted by phoenixy at 2:59 PM on November 4, 2016 [3 favorites]

I am a recently retired oncology nurse.
In my experience, the physicians I worked with were very flexible in using follow-up/maintenance Revlimid and other chemos. If there were signs of a slow response or residual disease after initial treatment, they were much more likely to continue therapy. Patients with great responses were only continued on maintenance if they were on a research protocol. They also worked with their patients to balance quality of life and medication side effects, and took every opportunity that they felt justified to give a patient a "drug holiday." And they paid attention to myeloma research, especially the results coming out of France, and adapted their treatments accordingly.

Your doctors should be doing these things, too, culture or not.
posted by SLC Mom at 5:26 PM on November 4, 2016 [2 favorites]

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