Breast Cancer Screening and “Soft” Death Panels

Posted on November 17, 2009
Filed Under General Rationing Issues, Guidelines, Abuse of, Healthcare Reform |

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DrRich has posted a follow-up to this post, responding to the soothing blandishments of Ms. Sebelius, here.

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The term “death panel” was popularized this past summer by Sarah Palin, when she single-handedly crystallized the debate over healthcare reform. For many in the unwashed masses, “death panel” conjures up an image of some sort of tribunal, populated by mindless bureaucrats, before whom you will be brought when you are sick (and therefore not at your best), and which, after glancing your way with all the focus and compassion you get from the clerk at the DMV, will offhandedly wave you in this direction (toward the medical care you seek), or that (toward hospice).

It is this image of a death panel that allowed Ms. Palin’s many critics to ridicule her backward ways, and dismiss both her and her unruly supporters (mindless rabble, angry mobs, and teabaggers one and all) as complete buffoons, unworthy of any response save disdain. For, this sort of death panel truly is patently absurd.

It would be far too inefficient (and far too personal) to set up your death panels in this way.

To get a glimpse of what death panels will really look like, let us consider the new “Recommendation Statement on Screening for Breast Cancer,” released just yesterday by the United States Preventive Service Task Force (USPSTF).

These new recommendations will seem stunning to many, because they constitute a significant about-face for the USPSTF. The new document, for the first time, emphasizes the risks of cancer screening, and greatly reduces the type, frequency, and duration of recommended breast cancer screening, compared with the same agency’s recommendations of just a few years ago.

These changes, DrRich humbly submits, reflect just what one would expect to see from an actual death panel - if there were such a thing as death panels. It is not the “hard” death panel that Ms. Palin’s critics accuse her of raving about; rather, it is a “soft” death panel (and more likely what she actually meant).

What Are The Features of a Soft Death Panel?

Assuming that death panels (if they exist) will take some form other than that exemplified by the Nazi officer pointing you either to the labor camp or the gas chamber as you file out of the boxcar, that is, assuming we will see “soft” death panels rather than hard ones, what features will characterize such a death panel?

Most likely, death panels will originate with “independent” panels of experts, appointed by a government agency such as the Department of Health and Human Services (or perhaps by some sort of health czar), and whose job will not be to set actual policy, but rather to make recommendations. The participants on this panel generally will be respected physicians and scientists who take their task seriously, who are well-meaning and civic-minded, who (being strong advocates of guidelines) will carefully follow the guidelines they themselves are given, and who would take great umbrage at the notion that they are participating in a death panel of any species, hard or soft.

This independent panel of experts would operate under two guidelines:

- their recommendations will have to be strictly based on evidence-based medicine
- their recommendations will have to take “cost-effectiveness” into account

Finally, doctors, insurance companies, policy makers and other healthcare decision makers will be held accountable for taking the recommendations of this panel quite seriously.

That’s it.

DrRich understands that more than a few of his readers are wondering at this moment what his problem is with such an arrangement. It actually sounds pretty logical, and indeed, many if not most policymakers are advocating just this kind of system. So what’s the problem with it?

This very question is what will make the soft death panels so effective. Most people will not see them as a problem at all, much less as death panels.

DrRich must therefore remind his readers that bias is inevitable in clinical research, and those who control the process get to control the bias - and therefore control what turns out to be medically right and wrong. Further, clinical research of any kind only tells you about the average response within a large group of patients, and cannot tell you how specific individuals will respond, or which specific individuals are likely to respond differently from the average, or which individuals would - if given the opportunity - weigh the risks and benefits differently than a panel of experts thinks they should. In other words, what we are getting with such a system is group medicine, and not individualized medicine.

So, the hallmark of soft death panels will be to take clinical evidence collected in groups of patients - interpreted with an overwhelming bias toward reducing costs - and to institutionalize and enforce the application of that evidence to individual patients. Soft death panels will be in the business of interpreting clinical evidence in the service of covert rationing, and the results will be packaged and sold as science - pure, sweet, clear, and unassailable science.

One major advantage of soft death panels is that, if policies end up being established that lead to the death of patients (i.e., if a death panel has actually functioned), nobody is responsible. It’s not the panel of experts which is responsible. These experts are just strictly following the science to wherever it may lead. It’s not the insurance companies or governmental agencies, who are just following the recommendations of the experts. And it’s not the doctors, who are simply practicing the high-quality medicine we demand of them, by carefully following the evidence-based guidelines which are handed down to them from on high. The responsibility for any harms that result are so well distributed as to be completely unidentifiable - the death panels are “soft.”

With these features of a soft death panel in mind, let us now consider:

The New Screening Recommendations for Breast Cancer

The USPSTF is an independent panel of experts appointed by DHHS, whose job is to make recommendations on preventive medicine - recommendations which are most often adopted by insurance companies, doctors and policy makers. So the USPSTF has a big say in what, in the way of preventive healthcare, gets paid for and what doesn’t.

The new USPSTF Breast Cancer Screening Recommendations have stunned many, and there is a lot to talk about. But for our purposes (i.e., attempting to demonstrate soft-death-panel-like behavior), it will suffice to examine three of these striking differences.

1) The USPSTF has increased the age at which women should begin having screening mammograms from 40 to 50.

The appropriate age to begin breast cancer screening has always been somewhat arbitrary and controversial. The incidence of breast cancer increases steadily with age, so there is no bright line age-cutoff, whereby women above the line need screening, and women below the line do not. For many years the cutoff for screening has been set, with some debate, at age 40. The question we must ask is: What evidence was used to change the recommended age of screening to 50?

In making this change, the panel (remarkably) admits, “. . .the USPSTF recognizes that the benefit of screening seems equivalent for women aged 40 to 49 years and 50 to 59 years.” That is, the benefit of screening is no less for the younger women than for the older ones. Indeed, the USPSTF concludes that mammogram screening for women between 40 and 49 years of age reduces breast cancer mortality by 15%, which is actually better than the 14% reduction seen in women aged 50 - 59.

But the USPSTF goes on to note that the incidence of false-positive mammograms (leading to unnecessary biopsies, and producing anxiety, and yes, more expense) is higher for women between 40 - 50.  Expense is clearly an issue. The panel pointedly notes that the number of women “needed to invite for screening to extend one woman’s life” was found to be 1904 for women aged 40 to 49 years and only 1339 for women aged 50 to 59 years. That’s nearly 600 extra mammograms for each life saved in the younger women.

The bottom line is that breast cancer screening is just as effective for women aged 40 - 49 as it is for women aged 50 - 59; the reduction in mortality is the same. But because there are more false-positives among the younger women, and so it is more expensive to save those lives, the USPSTF has stopped recommending breast cancer screening for the younger women.

If this is something other than a pure cost play, DrRich does not see it.

2) The USPSTF no longer wants doctors to train women to do breast self examinations (BSE).

Here, the USPSTF notes that randomized trials have shown a) there is no mortality benefit to performing BSE, and b) there are adverse consequences of performing BSE, in the form of unnecessary biopsies.

So, ladies, stop doing them.

The USPSTF bases this remarkable recommendation on two large randomized clinical trials (involving hundreds of thousands of women) conducted in Russia and China, where mammogram screening is not available. The trials both showed that among these large populations of Russian and Chinese women (who went on to receive Russian and Chinese healthcare), BSE did not improve overall survival. And, those women who did BSE ended up having twice as many breast biopsies as those who didn’t, many of which revealed only benign lumps.

So: randomized clinical trials - the gold standard - show that BSE does not improve survival, and indeed yields net harm (in the form of unnecessary biopsies). The only logical recommendation is to stop performing BSE.

This, to DrRich, is an egregious misapplication of evidence-based medicine. He is thankful to the USPSTF for providing him with such a serviceable example, which nicely illustrates some of DrRich’s main points about how evidence-based medicine can be abused.

First of all, it ought to be intuitively obvious that, while there may not have been any statistical benefit with BSE to the women in these studies as a whole, it is a certainty that individual women benefited from BSE - at least to the extent that their breast cancers were detected earlier than they otherwise would have been. (Indeed, in the Russian study this was proven to be the case.) These individuals, then, at least had a shot at better survival by virtue of their earlier detection.

And likely their survival actually would have been better if they had been in the US. For, whatever the overall results of these trials, conducted in such exotic locales more than a decade ago, they can have nothing whatsoever to do with women in America in 2009, who receive far more aggressive, tailored, and sophisticated therapy for breast cancer than women in virtually any other country in the world - especially Russia and China. In any case, the early detection of breast cancer is far more likely to be a significant factor in determining outcome in the U.S than it is in recently (or presently) Communist countries with 3rd world healthcare systems.

Finally, when a woman in Russia or China finds a lump, the next step is a biopsy. When a woman in the US finds a lump, the next step is a mammogram, so that biopsies will only be performed if the lump remains suspicious after this non-invasive imaging study.  For the USPSTF to compute the “harm” that would result if American women performed BSE, based on a study in which participants had no access to mammograms, seems blatently misleading.

Recommending that American women stop performing BSE based on such evidence is, DrRich submits, a very fine example of misapplying evidence-based medicine for the purpose of cost containment.

3) The USPSTF no longer recommends breast cancer screening for women over age 75.

Here, the panel admits that breast cancer is the leading cause of death in these older women, but notes, alas, there are no data from randomized clinical trials that address breast cancer screening in this population. The panel could simply have stopped right there, and made their recommendation not to screen these elderly women, and they would have been in complete compliance with their guidelines (i.e., don’t recommend something if there’s no data from randomized clinical trials to support it).

But it probably seemed just a little awkward, for some panel members, to recommend not screening for a very screenable disease that happens to be the leading cause of death in these women. So, their report goes on to do some ill-advised explaining.

The USPTSF, in defending this unusual recommendation, says “the benefits of screening occur only several years after the actual screening test, whereas the percentage of women who survive long enough to benefit decreases with age.” In case that didn’t sink in, they go on to say that, “women of this age are at much greater risk for dying of other conditions that would not be affected by breast cancer screening.”

In other words, it is not particularly valuable to identify early, treatable breast cancer in these old coots, since they are fixing to die anyway. In fact (one can almost hear them say), you’ve had a nice long life already - what the hell do you expect from us?

This is as close as the “soft” death panel gets, within this remarkable set of recommendations, to behaving like the “hard” death panels Sarah Palin and her unsophisticated followers like to complain about.

Summary

As DrRich has pointed out on several occasions, real preventive medicine is expensive, and despite all the lip service our leaders give to its importance (and remarkably, its cost saving potential), we are going to have to find a way to stifle preventive medicine under any covert rationing regime. The costs of preventive medicine are manifold, and include the cost of the screening test itself; the cost of doing additional follow-up testing when the initial screening test is positive; the cost of treating all that “early” cancer that probably would never have killed you anyway (you being so old and decrepit and all); the cost of treating cancers that, if they had gone undetected for a while longer, might result in a much quicker and much cheaper demise; and of course, the cost of prolonging the life of old people who just sit around collecting social security and medicare, and who may have big stashes of money which the government can confiscate (through death taxes) if they’ll just die.

The new USPSTF recommendations on breast cancer screening are merely responding to these overwhelming cost imperatives.

DrRich does not attribute any malfeasance to the USPSTF itself. He is sure that those who serve on this panel are honest, well-meaning individuals. DrRich merely intends to illustrate the kind of outcomes you can expect when you give a panel of experts a bunch of randomized trials to consider, along with a mandate to make their recommendations adhere strictly to the outcomes of the trials themselves, with a very, very large emphasis on the cost-effectiveness calculations that flow therefrom - and (in this case) to give the non-malignant risks of screening tests equal weight to the cancer itself.

What you get is a soft death panel.

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MedInformaticsMD makes a similar point today at the Health Care Renewal Blog.

Comments

13 Responses to “Breast Cancer Screening and “Soft” Death Panels”

  1. #1 Dinosaur on November 17th, 2009 5:04 pm

    There is a huge factual error in your discussion of breast self-exam regarding the management of palpable breast masses. Technically, mammography is not the test of choice for evaluating a palpable breast mass; ultrasound is. Mammography is also done, but NOT to evaluate the palpable mass, rather to see if there are any other suspicious NON-palpable lesions. Although an ultrasound can indeed be reassuring enough to obviate the need for biopsy, a “benign-appearing” mammogram should NEVER be considered a reason not to biopsy.

    Also, the statement “Doctors should no longer train women to do breast self-exams” is NOT the logical equivalent of “women should not do BSE.” While I agree that obsolete studies in irrelevant locales make for poor justification for recommendations, the reason I heard was that doctors’ time with women was better spent discussing things like diet, exercise, smoking cessation, and other preventive measures with better evidence for efficacy. In other words, go ahead and feel around in the shower, but don’t expect the doctor to waste precious time during your visit to go over the fine points (since there really aren’t any. Turns out the variable most associated with doctors’ ability to find breast masses is time spent on the exam.)

  2. DrRich on November 17th, 2009 6:12 pm

    #1 D,

    As a simple country cardiologist, I’ll admit to ignorance in how palpable breast masses should actually be evaluated. So before writing this ditty, I consulted Medscape and a couple of other sources, and found that palpation, mammograms, fine needle biopsy and ultrasounds are all used for evaluating this condition, in various recommended order. (I found several algorithms for using these tools, and in which order, and different sources used different recommendations.) For the purpose of my little ditty, to simplify (and because I really don’t know what I’m doing in this regard), I summarized and condensed my research to “mammogram.” I did this realizing it might (but hoping it wouldn’t) insult the intelligence of physician readers who actually understand this stuff. My main point was that in the US, women don’t go from finding a lump directly to biopsy, but travel through various technology-based intermediate steps that might preclude an open biopsy, whereas in Russia/China, at least in the 1990s, they do.

    If the USPSTF really meant to say that it’s OK for docs to tell their women patients how to do breast exams, but that they would be better off telling them to stop smoking and lose weight, then that’s what they should have said. I read their report as saying (based on Russian and Chinese studies from a decade ago) that BSE is both useless and potentially harmful, and to my reading they were pretty explicit about it.

    Rich

  3. Jan Krouwer on November 17th, 2009 8:54 pm

    It’s not just the experts that cause concern. In a front page article in The New York Times, David Leonhardt’s litmus test for health care reform is prostate cancer. He favors watchful waiting. A physician he consulted confirmed this. As it turns out, this is an infectious disease physician who performs cost-effectiveness and economic analyses.

    http://www.nytimes.com/2009/07/08/business/economy/08leonhardt.html?_r=1

  4. Al Neustadter on November 18th, 2009 7:04 am

    Incredibly insightful article, Dr. Rich. Regarding people 75 and up, I’m convinced we’ll be seeing a torrent of “evidence-based watchful waiting” recommendations across all medical specialties. We’ll also soon see a statistical average / evidence-based minimalist approach to aggressively doing much of anything for someone over 90. Wait a minute, that’s already here now.

  5. A Skeptic on November 18th, 2009 8:46 am

    You are always talking about the evils of covert rationing. Aren’t these panels a step in the right direction toward the open rationing that you have been proposing all along? These new screening proposals have been put out into the open for everyone to see. The methodology behind them is no secret. Physicians, patients, politicians, interest groups, and everyone else can debate them. I think this is a step in the right direction.

  6. DrRich on November 18th, 2009 9:13 am

    Skeptic,

    That’s an insightful comment.

    An open rationing program would be just that - an announcement that we’re going to ration healthcare openly, followed with a publicly devised, transparent system for doing so. That open system would necessarily apply to all medical services, so that every patient with every medical disorder would be equally treated, as the rationing decisions are made. (We would not ration arbitrarily, against just this or that group of patients.)

    A hallmark of covert rationing, on the other hand, is to do whatever rationing you think you can get away with. That’s what’s going on here. They’re seeing whether they can parlay their new “concern” over the risks of breast cancer screening into cost savings. They are not being honest about their purpose, and they are not being honest about their methods (as I have attempted to show in this post), and they have arbitrarily selected a population of Americans (women under 50 and over 75) who they are willing to place at risk (to see if they can get away with it). If you accuse them of rationing, or even just withholding a medical service with questionable justification, they become indignant. That’s rationing covertly.

    On the other hand, I agree with you to the extent that it will be very difficult for the government to get away for long with this kind of covert rationing. Their rationing efforts will be called out (which is what I am trying to do, and now many others are, too). My hope is that heavy-handed efforts like the one USPSTF is now engaged in may finally trigger a general discussion about the unavoidability of rationing, and what we as a society should do about it.

    So I agree that what we’re seeing here is not all bad. It may eventually lead to the difficult, unpleasant, but very necessary discussion we should be having. As you suggest, it may be a step in the right direction.

    But I don’t agree that it’s open rationing. It’s just incompetent covert rationing.

    Rich

  7. Praveen on November 19th, 2009 9:47 am

    Dr. Rich, I must agree with “A Skeptic” - in the past, in your own writings, you have favored just such rationing approaches. In the version of GUTH that I read some time back, you even favored the creation of different QALY-level insurance plans, thus codifying the rationing explicitly.

    We’re going to see more of this, and I think it’s absolutely the right approach. We must keep in mind that nowhere in any proposal is a patient’s right to spend his own money denied - and thus there are no death panels lurking anywhere just yet.

    I have been absolutely amazed by the incoherent lack of fiscal discipline shown by Republican politicians over the course of the year’s debates - they would like to have Medicare continue to cover everything, forever! I’m not saying that that is your position, Dr. Rich, but you can’t have it both ways. You have strongly lobbied for open rationing, and this is the closest thing we’ve seen yet.

  8. DrRich on November 19th, 2009 9:58 am

    Praveen,

    Please re-read my response to Skeptic.

    I am an advocate of open rationing, and have proposed a methodology for doing it.

    This is not open rationing, but a form of covert rationing that is becoming less covert, and therefore more difficult to hide. I think it is an important step in the direction of open rationing, but to get there from here, we have to call the bureaucrats out, make them admit that rationing is unavoidable, and force them to engage in a public discussion of how to do the unavoidable rationing fairly, effectively, and efficiently (instead of by whatever means they think they can get away with).

    Open rationing is transparent. This is anything but. I will elaborate on this point (i.e. the intentional and egregious lack of transparency) today in another post.

    But what I’m trying to do here is to call the bureaucrats out, and make them admit they’re rationing. This is merely the first step in a 12-step program.

    Rich

  9. Jordan on November 19th, 2009 11:15 am

    Dr. Rich,

    I highly respect your opinions but must disagree.

    Meta-analysis are often flawed. I have trouble believeing the actual numbers that come out of the USPSTF’s study. That, however, doesn’t mean their assertions are wrong. Study after study seems to suggest that screening mammograms in Patients 40-49 do not show a statistically significant improvement in outcomes either in breast cancer mortality or overall mortality:

    The Age trial (one of the best):(breast ca mortality) rr 0.83 (0.66-1.04)
    overall mortality rr 0.97 (0.89-1.04)
    Stockholm (Breast cancer Death) rr 1.08 (0.54-2.17)
    Gothenburg (breats ca death)rr 0.69 (0.45-1.05)
    CNBSS-1 (breast ca death) rr 1.06 (0.80-1.40)

    These are just a few of the studies that were used. You can argue that there is a trend towards benefit but with out staistical significance I don’t think that means very much.

    As for the 50-59 age group. I have not reviewed the data yet but suspect there is a more statistically significant benefit in the studies used to assess this age group.

    I think the problem is with trying to meta all the data into a single cohesive unit and assign numbers to it. But I don’t think that women generally benefit from screening 40-49. The data is pretty solid. USPSTF has just done a horrible job of sumamrizing that data and giving a clear explanation.

    I have heard this assertion and I would like to hear your comments:

    In general as screening tests go the advent of colonsocopies and pap smears have radically changed the incidence and overall mortality of colon and cervical cancers. On the other hand mammography, and PSA (and digital rectal exams) have increased the incidence but not radically changed the overall mortality of breast and prostate ca.

  10. DrRich on November 19th, 2009 2:00 pm

    Jordan,

    Please understand that I am not arguing that mammograms should be done in everybody, or even asserting that mammogram screening signficantly reduces mortality in this group of women or that. I don’t know enough about breast cancer (being, still, a simple country cardiologist) to hazard a learned opinion on that. For all I know, you may be quite right, and if we had a true open rationing system - where we were deciding what medical services to cover using similar criteria across the whole spectrum of diseases and individuals - then perhaps breast cancer screening would be found to be of such relatively low benefit that no breast cancer screening would be provided to anybody.

    Rather, I am arguing that - based on the information the USPSTF itself provides - the process the panel has used here, a process which sets important precedents, has been bastardized for the purpose of reducing cost.

    They have set the precedent of directly extrapolating survival data from England (where we have all heard about the months-long queues before you even see an oncologist, and the reduced chemo options when you finally do) to decide what to do with American women receiving American healthcare.

    Even more laughably, they have extrapolated survival data from true 3rd world healthcare systems to do the same thing, which would be like studying the statistics from a Pee-Wee football league, then telling the New England Patriots to give up on the forward pass because the percentages just aren’t there.

    I understand that the decision to screen 40 year old women in the past has been somewhat arbitrary. But that has been the precedent, and the expectation, and to change that recommendation ought to require real evidence. Based on what the panel itself provides, the logic for the change was that more women in the lower age group need to be screened to save a life. It’s just not worth screening those extra women, they’ve decided arbitrarily. That’s a purely cost-based decision. Bad precedent.

    Perhaps worst of all, they came right out and said that women over 75 are just too damned old to be screened for breast cancer (though they said it a tad - but just a tad - more politely than that).

    Arguing that these are bad precedents, I think, is a reasonable argument whatever the actual benefits of mammography turn out to be - benefits which I cheerfully admit I am not competent to describe.

    Finally, I think most of us would agree that the real answer is to explain to women (of any age group) what the expected risks and benefits might be from breast cancer screening, and let them weigh those risks and benefits for themselves. “Recommendations” like these, especially from this panel, take group statistics and apply it to all women - and they do it with the force of law. (See my post from today to see what I mean by this.)

    Rich

  11. Chris FOM on November 19th, 2009 3:41 pm

    DrRich, I agree with you on one of two counts. The rationale behind not screening women under 50 clearly is an example or covert rationing poorly hidden, but with older women it seems somewhat more justified, with the caveat that it should not be a hard age cutoff. The concept of not screening for diseases that take longer to kill someone than they have years left is not something I have a problem with. The ebst example I can give is screening colonoscopies. They’re done every 10 years since that’s about how long it takes a malignancy to develop (on average). When a patient’s life expectancy drops below 10 years, they’re likely to die from another disease before colon cancer even becomes an issue and the benefits from early detection don’t apply as much. My issue with the USPSTF here is that they just eliminate them at 75. I have plenty of patients over 75 who are quite healthy and have more than enough years to justify further screenings. However, I also have a large number under 75 for whom breast cancer is the least of their worries. I think approaching it more like colon cancer and stopping screenings after life expectancy drops below a certain time would be far more sensible and equitable.

  12. DrRich on November 19th, 2009 5:54 pm

    Chris FOM,

    I think we both agree that: a) many women over the age of 75 should probably not have routine screening for breast cancer, because their life expectancies are quite low; b) many women over the age of 75 are very likely to live another 15 or 20 years (if they are still healthy at 75), and that routine screening makes sense for these women. That is, we can agree that these decisions should be individualized.

    That being the case, for the USPSTF to place ALL women 75 and older into the “too old and sick to benefit” bucket is wrong, and sets a very bad precedent. That’s my point.

    Rich

  13. Drthom on December 7th, 2009 12:03 am

    An additional difficulty with cost benefit analysis is that cost is not fixed, and is a function,in large part,of volume. I’m pretty sure that these changes won’t affect the cost of an individual mam but there is a point where the increase in the per test cost offsets the reduction in volume. Doing tests in harmful quantities to keep the cost down is not what I am endorsing,rather if cost-benefit is an explicit part of the equation,should dynamic market forces not be part of the discussion? I have not once seen it mentioned in these types of recommendations. I mean, if it is going to cost the same to save1000 more life years, shouldn’t we do it, even if it means more mamms. I am afraid those crunching the # are not economically sophiticated to understand market nuances and seem to only believe total cost is a function of total #s of tests. Also as folks live longer and healthier, their deaths are associated with high economic loss, but the value of those life years seem to be static assumptions that are decades old…….is this further evidence of lack of sophistication?

    by the way drrich, my mom is a razor sharp robust 87 year old who has lived with lung cancer for two years. She says she feels fortunate to get diagnosed with it now because in five years she wouldn’t be allowed to “sniff the inside” of an oncologists office. Her goal is to live long enough for some one, anyone to deny her care before she is ready to give it up on her own terms. “maybe old Barry himself might sing the denial of benefits…..wouldn’t that be something?”

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