The bell curve

 

In statistics there’s something known as the bell curve. Values that are distributed normally tend to cluster at the center, tapering away to outliers on either end. If you were to plot them on a graph, the curve assumes a bell shape – sometimes flat and sometimes steep, depending on what you’re measuring and the data you’re using.

Health care often relies on principles similar to the bell curve for making diagnoses, managing diseases and recommending screenings and vaccinations. A particular set of symptoms, for instance, will usually suggest one or more probabilities for what the diagnosis might be. Some diseases are more likely to be found among children; others, such as heart disease, tend to occur among adults.

Real life, of course, isn’t always this predictable. Common diseases sometimes present themselves in uncommon ways, or proceed down a path that isn’t typical. Not all patients can be treated the same. The challenge for the physician is to be aware of the outliers yet not lose sight of the most likely probabilities.

Figuring out this balance between what’s right for the group and what’s right for individuals has never been easy, a fact that has been hammered home the past couple of weeks in the wake of the U.S. Preventive Services Task Force’s controversial new recommendation to offer fewer mammograms, especially to women in their 40s. The task force’s epidemiology was sound; after all, breast cancer is statistically most common among women in the 50- to 70-year-old age group. But how should we account for women on either end of this particular bell curve – women older than 70 and women in their 40s and younger? Where do they fit into this picture?

I’m not sure this is a question that epidemiology is equipped to answer. The fact that younger women are not the majority when it comes to breast cancer doesn’t mean their needs can be brushed aside. Indeed, breast cancer often is more aggressive in this age group, something that isn’t always reflected when large amounts of data are compiled and analyzed. It’s one of the dangers of statistical analysis: The sheer numbers can obscure critical differences among subgroups and lead to conclusions that are overly broad.

Did the USPSTF fail to account for the bell curve? Plenty of critics think the task force totally missed the boat.

One of the accusations has been that the task force’s analysis was too limited. Its study focused primarily on women considered at average risk of breast cancer. Rather than simply looking at whether screening helps with early detection of breast cancer, the panel examined whether it leads to fewer deaths. The task force also was selective about the existing studies it reviewed, which could well have influenced the conclusions that were reached. If another group designed a slightly different analysis, the results might be different too.

Another criticism is that the recommendations are based on the use of film mammography, an older technology that is increasingly being replaced with digital mammography. If you read the task force’s clinical summary, however, it’s clear that both digital mammography and MRI imaging were reviewed for their effectiveness. The conclusion was that there’s insufficient evidence to show these two technologies are better overall at detecting cancer than film imaging. The task force noted that digital mammography appears to be "somewhat better" for younger women or women with dense breast tissue. MRI imaging appears to be more effective among women at higher risk of getting breast cancer. The down side: Both technologies are more expensive, and they’re more likely to lead to false positive findings and possibly overdiagnosis.

Other organizations are doing their own analysis of how the USPSTF reached its conclusions. No doubt we’ll be hearing more about this issue. None of this is etched in granite, after all, and our perspectives on the benefits of mammography will likely continue to evolve as more data are accumulated.

For what it’s worth, I don’t think the USPSTF deserves the bashing it has received over the new mammography guidelines. This is a nonpartisan group with considerable credibility. Its recommendations have generally been viewed as the gold standard in clinical practice. In many respects the panel is even conservative – careful to weigh the evidence and consider the existing science. Whether you agree with the panel’s conclusions or not, it took guts to ask important and tough questions about the benefits of screening for breast cancer. It’s safe to say we in the United States spend millions of dollars each year on mammograms – more than any other industrialized nation. As politically unpopular as it may sound, we need to be asking ourselves whether it has made us healthier or given us better outcomes.

Maybe this is part of the problem. Pointy-headed academic science has a way of colliding with real life. What we see and what we experience aren’t always explained by the statistics. The bell curve might illustrate the epidemiological probabilities but it doesn’t necessarily tell us how this is supposed to apply to individuals.

There’s a balance somewhere in here between being driven solely by the scientific evidence vs. being ruled by emotion and anecdote. I’m not sure where it is but we do need to find it and bring the discussion back to a more rational plane.

Untangling the flu vaccine messages

Every year there’s some new angle on the influenza vaccine.

One year, I remember, it was discovered that the vaccine produced by one of the manufacturers wasn’t strong enough to offer full protection against the flu. Thousands of high-risk patients had to be called back in to receive a second booster dose.

Some years there have been vaccine shortages. Other years there have been delays in manufacturing and distribution.

The target audience for the vaccine has continually expanded. At first, flu shots were for the elderly. Then annual vaccination began to be urged for anyone with a chronic health condition – diabetes, for instance, or asthma or lung disease – who might be at risk of severe illness from flu or flu-related complications.

Within the last few years we’ve seen a bigger push to vaccinate children, after studies found this helps reduce the spread of flu viruses and increases what’s known as herd immunity. There also has been a push to vaccinate health care workers, partly to keep them healthy but also to lower the possibility of germs being transferred from patient to doctor or nurse and thence to the next patient they see.

If anyone is handing out prizes, though, the current influenza season takes the award for being the most complicated in recent memory. Not only do we have seasonal influenza to contend with, we also have the H1N1 novel virus. The arrival of the novel influenza virus this past April has meant we’ve been seeing flu cases through the summer and into the fall – months when flu is usually absent.

One of the biggest reversals: It’s children, not older adults, who are being hit hardest by the H1N1 virus. During the first six months of the pandemic, there were 98,000 hospitalizations and nearly 3,900 deaths. One-third of the hospitalizations were among children and teens 18 and under. Deaths also have been occurring at the highest rate among people younger than 65, the complete opposite of what we’re accustomed to seeing.

Now add in separate vaccines for seasonal flu and for H1N1, delays in manufacturing, and priority lists for who should receive the vaccine, and watch the complexity intensify.

Those who work in public health say it has been very challenging this year to craft their messages and to ensure these messages are accurate and that they’re reaching the right audience. (I’ll add here that it has been challenging for the news media as well.)

When we talk about flu vaccine, are we talking about the seasonal vaccine or the H1N1 vaccine? We’ve had to be specific because these are two different things.

When we’re describing the priority groups to receive the H1N1 vaccine, do we mean children, teens and young adults through age 24 or up to age 24? Even people who work with this every day tell me they’ve had to frequently stop and double-check to make sure the message is coming across clearly.

One thing we’ve all learned is you can’t assume anything. A new question cropped up just this past week: If a local medical clinic is offering the H1N1 vaccine, can anyone come in for a shot or is this only for established patients? I figured people pretty much knew this service is for established patients but clearly we need to say so directly.

It’s easy to take the whole process for granted. What most people don’t see is the work that happens behind the scenes – the planning, the coordination, the partnerships to help ensure local medical providers and public health are all on the same page. Without this coordination, there can be confusing and inconsistent messages to the public. Flu vaccine might not reach the people who need it the most.

The seasonal flu and H1N1 sagas are still far from over. There’ll likely be more confusion and questions as the weeks progress. But the process has been relatively orderly, and none of it has happened by accident. So the next time you talk to one of your local health care professionals, take the time to say thank you.

West Central Tribune file photo by Bill Zimmer

Thanksgiving plenty

When you read accounts of life in the Jamestown and Plymouth colonies in the early 1600s, you realize hunger was a constant presence. Colonists subsisted on what they could produce themselves: growing their own crops, tending the meager herds of livestock that survived the voyage across the Atlantic, and hunting wild game. Often they starved and died, especially during the cold, difficult winters. Of the original 214 settlers at Jamestown, only 60 were still alive after the first winter.

You have to wonder what they would think of 21st-century America and its abundance of cheap food. They would probably be stunned by the supermarkets and factory farms. They would be even more amazed at contemporary American behaviors surrounding food: fast food, super-size portions, calorie counting, the pervasive “good food/bad food” attitudes, bizarre diets such as the Cookie Diet, and competitive all-you-can-eat contests.

It’s intriguing to speculate whether those early, harrowing experiences of famine and hunger have somehow been imprinted on the national psyche, creating a uniquely American obsession over what we eat.

Maybe it’s why the traditional Thanksgiving dinner is such a big deal: It symbolizes a fundamental aspect of our history and culture.

The first Thanksgiving dinner (or, more accurately, a harvest dinner), most likely consisted of fare such as greens, shellfish and roasted meat – similar to this menu re-created at the Plimouth Plantation museum in Massachusetts.

Almost 400 years later, Thanksgiving dinner clearly has succumbed to modern-day food habits. I was a little surprised to learn that when Cornell University analyzed Thanksgiving recipes from 50 years ago and compared them to today, researchers found the calorie count has remained mostly stable.

Previous studies of non-Thanksgiving recipes by lab director Brian Wansink had found that calorie counts for many classic cookbook recipes have ballooned by nearly 40 percent during the past 70 years.

But Thanksgiving staples didn’t follow that trend.

Calorie counts for five of the eight recipes tested actually dropped by almost a third when comparing 1956 Better Homes and Gardens recipes to the 2006 edition of the “Better Homes and Gardens New Cookbook,” changes Wansink attributed partly to the use of lower-calorie ingredients, such as low-fat milk instead of cream. Surprisingly, some serving sizes went down over the decades too.

But wait. Plates are bigger, turkeys are much larger and it seems that as we sit down around the Thanksgiving table, we’re just eating… well, more. The Cornell University laboratory computed around 2,000 calories in the average Thanksgiving dinner.

I suppose we could wring our hands about overeating and obesity, but would it be in the spirit of the original Thanksgiving? I seriously doubt the colonists cared about calories. I don’t think they worried about whether the turkey came from an organic farm, and they would have been completely baffled by tofurky. They were just thankful there was plenty of food on the table and that they were there to enjoy it.

Of all the days in the year, this should be one occasion to set aside the nagging and the obsession about portions, calories, trans fats and waistlines. (At first I thought it was a joke, but no, the Center for Consumer Freedom has actually issued a Thanksgiving obesity liability waiver and they’re serious about it.) We can resume our worrying on Friday. So go forth, eat, enjoy and be grateful.

Linkworthy 1.4

So much to read and blog about, so little time. Here’s a roundup of various things that recently caught my attention while roaming around the Internet.

For those of us who remember the last time the U.S. attempted a fix of the health care system, the debate over the last few months has seemed a little bit like deja vu. But there are also some big differences between then and now, as this article in USA Today illustrates. USA Today tracked down several people who were interviewed back in 1993, during the Clinton administration’s health care reform initiative, and talked to them to learn whether their opinions have since changed.

What reporters found was frustration, rising medical costs and a sense that the current system is no longer sustainable. This excerpt typifies the contrast between then and now:

It cost David Cousens $546 a month to insure his family in 1993, when his lobsters were bringing in $2.70 a pound. Today, he’s paying about $1,200 a month for health insurance. Lobsters? Just $2.50 a pound.

That’s the main reason why Cousens, president of the Maine Lobstermen’s Association, has shed the hesitation he voiced to Hillary Rodham Clinton during a Boston forum in 1993 and now supports Obama’s efforts. It’s not the only reason. He wishes he could afford to provide coverage for his one employee. And he regrets that his two children, ages 27 and 23, can’t afford it, either.

A companion article chronicles 24 hours in the emergency room at the University of Virginia Medical Center in Charlottesville, Va., and the microcosm it illustrates of the ills in the health care system.

I confess: Back when I was in school, I loathed phy ed. Gym class had all the appeal of exercise time in a prison yard – the uniforms, the regimentation, the drill-sergeant instructor. (But at least we didn’t have to worry about getting shanked by another inmate.) So I could really, really sympathize with the students at Lincoln University in Chester County, Pennsylvania, who are being told, "Shape up or you won’t graduate."

Students whose body mass index is deemed too high are being required to take a fitness course in order to get their diploma. Tiana Lawson, a student writer for the school newspaper, The Lincolnian, wonders whether this is fair:

As someone who has taken many years to accept that I will never be a size two, I feel as though the administration is now telling me that not being a size two will now hinder me from graduating from Lincoln. I didn’t come to Lincoln to be told that my weight is not in an acceptable range. I came here to get an education which, as a three-time honor student, is something I have been doing quite well, despite the fact that I have a slightly high body mass index.

She says she’s going to take the fitness class anyway, "because I would like to be healthier."

Some students are protesting the requirement, The Lincolnian reports. And judging from the online comments and an accompanying poll, they have lots of company. My personal take on this: University officials may have meant well but they overstepped the boundaries. If they’re going to require a fitness course for overweight students, they should require it for everyone.

At some point in our lives, most of us will be the recipient of not-so-good news about our health. What about the physician who has to deliver the news – and to do so not just once or twice but many times in his or her career? Dr. Rob Lamberts at Musings of a Distractible Mind reflects on what it’s like to be the bearer of bad news.

There’s another kind of bad news: a "never" event that affects a patient. Dr. Michael Kirsch, who blogs at MD Whistleblower, recounts a recent experience and what he learned from the event. His conclusion: "I am no longer a smug blogger who is pontificating from a distance, but I am now a physician who has to explain to a real human being why something happened that never should have occurred."

To wrap things up, here’s the story of Cindy Chapman – and it’s a sad story, filled with missed opportunities, miscommunication and misunderstandings that led to this woman’s death. The Worcester, Mass., Telegram writes: "The 48-year-old political activist who so passionately pushed for health care reform was unable to advocate for herself or navigate the system, despite at least three trips by ambulance to UMass Memorial over two months."

How could this have happened? In a guest post at Kevin MD, writer Dan Ford shares more of the story, and readers respond in the comment section. Americans may be riled up about mammograms right now, but this is a sober reminder that people can fall through the cracks in more ways than one, with tragic results and no recourse.

Mammogram wars, round 2

As if the furor over a new recommendation to give mammograms less often to women in their 40s wasn’t enough, a recommendation also was issued last week by the American College of Obstetricians and Gynecologists calling for less-frequent Pap tests to screen for cervical cancer among women.

The ACOG’s reasoning:

Screening before age 21 should be avoided because women less than 21 years old are at very low risk of cancer. Screening these women may lead to unnecessary and harmful evaluation and treatment.

Cervical cytology screening is recommended every 2 years for women between the ages of 21 years and 29 years. Evidence shows that screening women every year has little benefit over screening every other year.

The public’s response has been remarkably muted. The ACOG’s recommendation is generally similar to the U.S. Preventive Services Task Force’s new recommendation on mammography. Both reviewed the existing data. Both weighed the relative risks and benefits of screening among various age groups, and both concluded the benefits aren’t significant enough to warrant annual screening among younger women – in the case of mammography, among women in their 40s, and in the case of the Pap test, among women younger than 21. (In case you’re wondering, the USPSTF’s position on cervical cancer testing is to screen among women within three years of the onset of sexual activity or age 21, whichever comes first.)

I don’t hear the sound of opponents sharpening their knives over the prospect of fewer Pap tests for younger women. Nor did I hear the pitchforks come rattling out of the shed last year when the USPSTF issued a recommendation against screening for prostate cancer among men older than 75.

When it comes to mammograms and breast cancer, it seems the discussion invariably becomes both personal and political. Indeed, it’s hard to make it impersonal. Breast cancer is the most common type of cancer found among women. Most of us don’t have to look far to find someone we know who has been diagnosed with it – including plenty of women in their 40s.

It doesn’t help that mammography has always been a somewhat imperfect tool, or that the benefits of screening for younger women have persistently inhabited a gray zone. It makes it harder to judge what’s the right thing to do.

Reasonable people can disagree about the USPSTF’s new guidelines. What’s frustrating, and even damaging, is the clamor over this. It has gotten so loud that it’s threatening to drown out rational thought.

For starters, people keep referring to the USPSTF’s new guidelines on mammography and breast self-examination as a new study. It’s not; it’s a review of the existing literature and a judgment call on the basis of data we already have. No one has broken any new ground here. The benefits of mammography among women in their 40s have been studied before and the benefits, weighed against the possibility of unnecessary further testing, overdiagnosis and possible harm, have never been particularly clearcut.

I’ve seen repeated statements that the new guidelines mean we’ll be abandoning mammography for women in their 40s. This is inaccurate. I’ve seen people charge that this was all about the money, when in fact the cost was not part of the USPSTF’s analysis. I’ve even seen people attack the USPSTF’s recommendations for women over age 75 as ageism and tantamount to sentencing older women to death. It’s rubbish; the guidelines merely say the benefits of mammography in this older age group are not clearly established.

And at the risk of sounding like a broken record, I’ll say it again: Anecdotes, even the most personal of personal stories, are not the same thing as evidence. There’s value in anecdotes; they illustrate, they illuminate, they put a human face on what would otherwise be a dry collection of statistics. But they’re not a substitute for good science.

A reader this weekend pointed me towards this transcript of an interview last week on PBS. It’s worth reading for its clear-headed look at the issue. One of the highlights comes from Dr. Diana Pettiti, vice chair of the USPSTF panel:

The task force is not saying there’s a cutoff. It is not recommending against ever screening women in their 40s.

The task force has made a recommendation against routine screening, that is, screening where a postcard comes in the mail and the woman is told that she must be screened every year. Again, we do not disagree at all about the need for women to make an informed choice about being screened at any age.

That conversation should begin in the 40s. And women who want to be screened, after understanding what those benefits might be against the harms or the negatives, should be screened. We don’t disagree. There is no cutoff. There was no magic number. And this was not a cost-effectiveness analysis.

For what it’s worth, I think the U.S. Preventive Services Task Force could use a savvy public relations consultant. The American public is not used to hearing about the down side of screening – any screening, not just mammography. We haven’t yet absorbed the fact that there are limits to its usefulness. It’s a message that has been out there, to some extent, but it doesn’t seem to be reaching very far. Last week’s recommendation probably caught most people by surprise, and they weren’t ready to hear it.

We should have been ready for it, however. At the very least, we should have been receptive and willing to be at least somewhat rational. I mean, come on, folks. This is science. This is epidemiology. Do we want our health care decisions to be based on the available evidence, or do we prefer to simply throw things at the wall and hope some of them stick?

Here in the United States we do an enormous amount of screening. Some of it, I’m sure, is very beneficial. But we do owe it to ourselves to understand the facts and the tradeoffs. And we need to be asking the hard questions and remain open to the answers, even if we don’t like what we’re hearing.

Added: From the New York Times, here’s an in-depth look at how the U.S. Preventive Services Task Force gathered the data and arrived at its recommendation on mammography.

Update, Nov. 24: Is there likely to ever be a final word on the benefits of mammography among women in their 40s? This has been a long-standing controversy, with expert views on both sides of the fence. An article in MedPage Today offers a historical perspective on the issue.

West Central Tribune file photo by Bill Zimmer

The comfort of strangers

The young woman’s plea on a cancer message board was raw and heartfelt:

The thing is, there’s not a lot of information out there about life after you get the "all clear" and that’s the part I’m having the hardest time with. When the crisis is over and all the celebrating is done, and everyone thinks you’re going to go back to normal.

The thing is, you’re not "normal" anymore. Everything has changed: your world view, your support system, your body, your mind, and of course, the worry that it might come back.

This is the information I want to read. I want to hear other people’s stories about the year after being given the "all clear," about the years that follow that.

Within less than an hour, the online responses started rolling in:

"Please know that you are not alone."

"I think you have to go through the stages… I do not think you are raw, just being real. I think many of us have these moments."

"At some point or another, I have said or thought every single thing you have expressed here. Sometimes I still do, even after more than 11 years… Eventually it does get better. You get to a point where you begin to integrate the cancer experience into the rest of your life. It gradually stops consuming your entire being."

Over the next few months, the comment thread accumulated more than 60 responses – a testament to the ability of online communities to transform strangers into a comforting source of support and information.

A recent story on National Public Radio explores how message boards and social networking sites are helping people connect with each other and learn about diseases and treatments. It’s a phenomenon that has been around for awhile but appears to be growing significantly.

NPR talked to Susannah Fox of the Pew Internet and American Life Project, who said people are increasingly taking an active role online:

"They are posting their first-person accounts of treatments and side effects from medications," says Fox. "They are recording and posting those podcasts. They’re tagging content. They are part of the conversation. And that, I think, is an indicator of where we could be going in terms of the future of participatory medicine."

This reflects the growth of social-networking sites. "The Internet now is not just information," says Fox. "There is a social life of information online. And people are using all these tools to connect with friends and family, to connect with health professionals. And people are accessing a much deeper level of information now than they were five years ago."

None of this is really a surprise. It has long been known that peer support can be extraordinarily beneficial when someone is facing a serious illness or dealing with chronic, long-term health issues. One of the commenters on the NPR story sums it up:

Patients use these online venues because they need two things they can’t easily find elsewhere. 1) Frank answers to their illness questions without the skepticism such as "Oh, it’s all in your head." 2) A sympathetic conversation from someone who has walked that same road. E-patients are people just looking for answers and helping one another find them. Every day, people tell me: Thanks, I’ve been searching for answers for so long…

Internet groups have sprung up for people with cancer, people with HIV, people with depression, people with psoriasis. I’ve seen online discussions in which participants swap notes about cutting-edge treatment and post links to the latest studies. I’ve seen people be honest about their emotions in ways they might not share with anyone else. It’s not unusual for people to make friends in an online health community, start e-mailing each other and even go so far as to meet in person.

These online groups often seem to fill a void that local support groups can’t match. It takes time, energy and commitment, after all, to attend a local support group meeting once a week or once a month. Groups that meet during the daytime might not be convenient for working-age adults. In smaller, rural communities, there’s the added issue of the lack of anonymity. And for those with diseases or health conditions that aren’t as common, it can be hard to find peer support no matter where you live.

There’s also something to be said for the collective wisdom of a large group. If you sustain a rare drug complication or side effect, for instance, chances are there’s someone else in the group who has had a similar experience and can share what they know.

Most studies confirm how useful online support can be. This study, conducted in The Netherlands, found participants in online groups gained more information, had a higher degree of social well-being and felt more empowered. Another study, of couples dealing with infertility, found that online support helped reduce their feelings of isolation.

You don’t necessarily have to be an active participant to benefit from an online message board. In this study, even lurkers reported they learned from what they read and that it helped them feel more confident about their treatment and their ability to manage their disease.

As with anything, there are caveats. Information gleaned from online discussions might not be accurate, or might not apply to someone’s individual situation. Nor are these groups a substitute for consulting with a doctor.

A forthcoming study in the Journal of Consumer Research acknowledges that the use of social networking sites for health information and advice has its critics. But when the study’s authors monitored and analyzed the discussion an electronic bulletin board for people with thyroid disease, they confirmed many of the benefits.

They write that the value of online communities is in facilitating learning "by collectively transforming everyday individual experiences into usable knowledge." Their conclusion: People gain the most from these sites when they’re able to become empowered and take action as a result of what they’ve learned.

HealthBeat photo by Anne Polta

Rewriting the mammogram rules

The fallout from Monday’s news that mammograms are being recommended less often for women continues to spread far and wide. Reactions have spanned the gamut: confusion, suspicion about the motives behind the new recommended guidelines, and even outright anger.

To summarize, here’s the exact wording of the U.S. Preventive Services Task Force’s new guidelines:

The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.

The USPSTF recommends biennial screening mammography for women aged 50 to 74 years.

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of screening mammography in women 75 years or older.

The panel gives a "C" recommendation to mammography for women in their 40s, meaning that while there may be some benefit to individual patients, there is "at least a moderate certainty that the net benefit is small. Every-other-year mammograms for women ages 50 to 74 received a "B" recommendation, defined as "high certainty that the net benefit is moderate or there is moderate certainty that the net benefit is moderate to substantial."

Needless to say, this flies in the face of the messages women have been hearing for the past umpteen years about screening for breast cancer. The debate has been raging fast and furious, including right here on the West Central Tribune’s Web site.

"Better a false positive than a missed positive!" was one person’s opinion. Commenters called the recommendation "ludicrous" and "hogwash."

If there was ever any doubt that the public was paying heed to being screened for cancer, look no further. They’ve clearly gotten the message. There’s just one problem: The thinking behind the USPSTF’s new recommendations is more nuanced and less cut-and-dried than many people seem to believe.

First, this change is not all that new. There has been a back-and-forth debate for many years over the benefits of mammography screening for women in their 40s. The evidence that it’s clearly beneficial for the general population of women in this age group has never been particularly strong. This does not mean it’s worthless, especially when it comes to individual women and their own health history, circumstances and preferences. What it means is that the existing data don’t conclusively demonstrate that all women should be screened annually, starting at age 40, in order to improve the rate of early breast cancer diagnosis and decrease the number of deaths from breast cancer.

Second, no one is saying we should stop screening altogether or that we should withhold mammograms from women who really want them. The USPSTF’s own clinical summary for women in their 40s says it quite clearly: "Do not screen routinely. Individualize decision to begin biennial screening according to the patient’s context and values." (Emphasis added.)

I suspect what we’re seeing here is the beginning of a new overall approach to screening in general, one that is perhaps more balanced and more realistic about the relative harm vs. benefit than we’ve seen in the past. In fact, we saw hints of this last month already when the American Cancer Society stated the benefits of cancer screening have perhaps been overstated – then quickly backpedaled from its statement.

Experts in population health have long known there are limits to what screening can accomplish. This article, first published by Slate five years ago and reposted this week, demonstrates how this has been an ongoing debate:

Clearly, years of strong, scare-oriented public health messages, particularly with regard to breast cancer screening – "Don’t be a victim" and similar slogans – have gotten through to the public. The dogma that more is always better when it comes to cancer screening has taken hold, undiluted by any sense of screening’s drawbacks.

Yet there are drawbacks – ranging from the risk of false positives to the more complex issues of overdiagnosis and overtreatment. While early detection can certainly have benefits, it’s not true that screening can only help – and can’t hurt. Indeed, skeptics within the medical community, including the authors of the JAMA survey, have started to become more vocal in an effort to create a more balanced public view.

The operative words here are "public view." It has always been challenging for advocacy groups, such as the American Cancer Society, to educate a public that varies widely in its level of health literacy and receptiveness to the message. Simple messages – "get screened" – seem to work best but they unfortunately gloss over the complexities and tend to leave the public with information that’s incomplete or minus significant chunks of context. It’s no wonder, then, that people are confused and upset when they’re now hearing something that, to them, sounds different.

The New York Times talked this week to women and sifted through online comments, and found a fair amount of skepticism:

… Still there remains plain old confusion. Leslie Haltiner, a teacher’s aide in Denver, said she was uneasy with the idea of shifting her own approach to breast cancer detection based on new federal guidelines without first knowing the medical specifics behind them, and also what oncologists and breast cancer awareness groups were saying.

"Everything I’ve heard, from the health advertisements to the medical professionals, says that even if you don’t have a family history of breast cancer, it doesn’t mean you won’t get it," Ms. Haltiner said. "This sends a real confusing message. Wow, they’re doing a complete 180."

It’s also hard to take the emotion out of the issue. Almost everyone knows someone whose breast cancer was detected with mammography. Anecdotes can be so powerful that it’s easy to overlook the fact that the plural of "anecdote" is not "evidence."

What are we to make of a recommendation that comes from an organization described as a government panel? The U.S. Preventive Services Task Force falls under the umbrella of the Agency for Healthcare Research and Quality, itself an arm of the U.S. Department of Health and Human Services. The task force’s mandate is to "conduct scientific evidence reviews of a broad array of clinical preventive services, develop recommendations for the health care community, and provide ongoing administrative, research, technical and dissemination support."

Plenty of critics see the new mammography recommendation as a first step down the slippery slope of government-dictated rationing of care. Is this because the recommendation happens to come from a nonpartisan government panel (the members of whom, by the way, all work in the private sector)? It’s worth keeping in mind that organizations such as the American Cancer Society, which continues to call for annual mammograms for women in their 40s, are in the business of advocacy and will likely take a stance that’s consistent with this mission. It’s also worth pointing out that not all advocacy groups are in consensus on this issue; the National Breast Cancer Coalition backs the new USPSTF recommendations, as does the National Women’s Health Network.

As I read the news stories, the analyses and the online comments in reaction to these new evidence-based guidelines, the word that comes to mind most often is "disturbing." I’d like to think there is some support among American consumers for evidence-based medicine – that is, medical intervention that has been shown to be effective and to achieve the desired outcome, vs. simply offering intervention for the sake of offering something or because the patient wants it. I’d like to think we’re capable of considering the facts instead of reacting in emotional knee-jerk fashion.

Some commentators have already started to wonder whether the American public is truly on board with evidence-based care. Physician-blogger Dr. Kevin Pho thinks it may be a tougher sell than anyone realizes: "The thought that ‘more medicine is better testing’ is so pervasive in the mindset of the American public that it’s going to be extremely difficult to scale back testing in this country. Even if it’s the right thing to do." He followed up these thoughts with another post that explores what the backlash on breast cancer screening might mean for health care reform.

My guess is that most physicians, and most women, will probably stick with annual mammograms starting at age 40. Perhaps a minority of women will appreciate that they can skip the annual mammogram routine without being viewed as irresponsible or needlessly putting their health at risk. Maybe some day our thinking will shift more towards the evidence. But right now, I’m not sure physicians are ready to embrace the USPSTF’s new guidelines, and I don’t think the American public is ready for them either.

Update, Nov. 20: The New York Times analyzes how the debate over cancer screening has revealed a culture clash in medicine. The Everwell site takes a look at five of the top myths about breast cancer screening and the USPSTF’s recommendations. Gary Schwitzer, a blogger and journalism professor at the University of Minnesota, also provides a running commentary on how the mainstream media has been covering this issue.

West Central Tribune file photo by Bill Zimmer

Fat patients: blamed and shamed

A couple of years ago, blogger Barbara Benesch-Granberg, aka Thorn, wrote about her mother’s death in a post baldly titled, "Fat Hatred Kills."

It’s a deeply personal story about her mother’s struggles with being fat and her negative experiences with the medical system that ultimately led to avoidance of care. Benesch writes:

…With all that shame, and with so little support from her family or her husband, once Mom got hurt, she had a hard time healing from it. So when I was about 11 years old, and Mom went to see her doctor because of some problem she was having, and he scathingly told her that her problem was she was fat, and not to come back to him until she’d lost 50 pounds? Yeah. It hurt her. It hurt her bad.

The post sent an enormous ripple through the blogosphere. Two years later, people were still reading it and adding to the comment thread. It struck such a nerve that it led to the creation of First Do No Harm, a blog that catalogues fat prejudice – and its consequences – within the medical system.

The individual stories make for compelling reading. (Warning: Be prepared for salty language.)

There’s Adrienne, who went to see a neurologist to discuss the medication she was taking for epilepsy, and was urged to try a different medication because it would help her lose weight. The doctor tells Adrienne, "You’ll like that."

Adrienne recounts being "speechless with rage."

I’m not sure what to attack first: the assumption that weight loss is something I want, or his obviously cavalier attitude toward my health. I came to him because I’m having seizures, not because I’m fat. I want him to prescribe a medication because it is the most effective available medication for stopping seizures, not because it’ll make me thinner – and hey, maybe if I’m lucky, I’ll stop having seizures, too.

There’s Suzy, age 33, who was diagnosed with kidney cancer. She needed an MRI scan but no facility would take her because of her size; one imaging center suggested she call a zoo. Then a consulting doctor refused to do surgery, saying her weight made it too risky.

There’s J.C., a depressed college student who is told that losing weight will make her depression go away. There are stories about patients feeling berated and disbelieved. Some of them were pressured to undergo weight-loss surgery.

Critics might dismiss these people (they’re not all women, by the way; some of the stories were submitted by men) as demanding and overly sensitive. But in fact a significant number of studies have found the general stigma towards obesity is echoed among health care professionals.

This study, published just two months ago, found that negative attitudes towards obese patients were quite prevalent among doctors, especially younger doctors or those who didn’t see as many patients. Another study, from June of this year, documented negative reactions to obese patients among 40 percent of the physicians who were surveyed.

It’s not just doctors. These attitudes also can be found among medical students, nurses, dietitians and even dentists. When undergraduates in the food and nutrition sciences were surveyed a couple of years ago about weight bias, they displayed moderate fat phobia. They also tended to view obese patients as less healthy and less likely to follow treatment recommendations. Yet another study found that although physicians weren’t as biased about obesity as the general public, they still carried fairly strong attitudes and stereotypes about fat patients.

Ironically, many of the studies found that doctors also are often ill-prepared or lacking in knowledge for how to help patients who want to lose weight.

This doesn’t, and shouldn’t, mean health care professionals are the villains here. Similar attitudes are widespread throughout society.

And to be fair, the patient experiences recounted at First Do No Harm are anecdotal and represent only one side of the story.

It’s clear, though, that this is a significant issue for patients who are overweight or obese. More than anything else, what stalks through the personal stories at First Do No Harm is a sense of outrage and humiliation, of being judged – and treated – solely as a number on the scale.

What happens when these patients leave the doctor’s office? As one person wrote at First Do No Harm, "we just don’t go back."

I don’t know why anyone would be surprised by this. The clinic environment alone – chairs that are too small, gowns that don’t cover, blood pressure cuffs that don’t fit - can be daunting and discouraging. And it doesn’t help when obese patients are continually assailed by commentaries such as this, suggesting they be charged more to be transported by an ambulance because of their size.

So, does fat hatred kill, as Benesch-Granberg maintains in her story about her mother? If fat patients stop going to the doctor because it’s frustrating and humiliating, it’s hard to see how this would benefit their health. If all their health issues are blamed on their weight, as many of the stories at First Do No Harm recount, it’s hard to imagine that they’re receiving quality care. Indeed, more than a few of the stories submitted to the First Do No Harm blog involve misdiagnoses or delays in care by health care professionals who may have been too fixated on the patient’s weight to see anything else.

Bias and stigma toward obesity may in fact have more implications than anyone realizes, suggests the latest study to explore this topic. The study, conducted by researchers at Johns Hopkins and published in the November issue of the Journal of General Internal Medicine, found that doctors have less respect for obese patients and raised questions about whether this might affect the care these patients receive.  (You can read the study in more detail here.)

It’s known, for example, that patients who are extremely obese and in need of a kidney transplant are less likely to receive an organ compared to patients who are not obese, even when other medical factors are adjusted for. You might argue that it’s because transplants are riskier among these patients – but how much of this is supported by the evidence and how much is based on perception or stereotyping?

A couple of key points from the Johns Hopkins study:

Previous studies have shown that when physicians respect their patients, patients get more information from their doctors. Some patients who don’t feel respected may avoid the health care system altogether, surveys and focus groups have shown. One limitation of the new study, [author Mary Margaret] Huizinga says, is that it was unable to link low physician respect directly to poor health outcomes.

"The next step is to really understand how physician attitudes toward obesity affect quality of care for those patients, to really understand how this affects outcomes," she said. "If a doctor has a patient with obesity and has low respect for that person, is the doctor less likely to recommend certain types of weight loss programs or to send her for cancer screening? We need to understand these things better."

I would be remiss if I failed to point out there are health care organizations that do understand this issue and who work at being respectful and sensitive toward their patients regardless of the numbers on the scale. It’s worth noting that Affiliated Community Medical Centers has a bariatrics and weight control center offering support and medical guidance for people who want to lose weight. It’s hardly fair, after all, to nag and scold patients for being obese – but offer nothing to help them do something about it.

It’s not easy to untangle perception and facts. No one can deny there are inherent physical aspects of obesity that have to be taken into consideration when caring for these patients. But there are specific challenges in caring for tiny newborns too, or for frail elderly patients or for patients who use a wheelchair. Why should obesity be any different?

When the medical world buys into the negative stereotypes about fat patients and can’t look past their weight to see the individual patient, is this really helping these people? Or is this adding to their health burden? It’s a question that needs to be asked, and one that deserves some hard, honest examination.

Update, Nov. 23: This week’s edition of American Medical News takes its own look at this issue.

West Central Tribune file photo by Bill Zimmer

Selling the hospital

Amid all the recent news coverage of the merger between MeritCare and Sanford Health, another transaction closer to home might have gone almost unnoticed: the finalizing of the sale of Marshall’s city-owned hospital to Avera Health.

The papers for the $38.5 million sale were signed Nov. 2, the Marshall Independent reports:

A neat line of papers that covered the tops of several long and narrow tables at Avera Marshall on Monday was part of 40 documents that included the details of the sale. The deal includes $10 million for the Avera Marshall foundation, the $5 million PERA fund, $2 million to the city and other terms including the pay-off of Avera Marshall debt.

It’s the hope that by joining forces with the privately owned Avera Health of Sioux Falls, S.D., the hospital in Marshall will be able to develop a stronger regional presence. The lengthy discussion leading up to the sale was in fact initiated by Avera Marshall, not by Avera Health.

It will be interesting to see how developments unfold over the next few years. Avera Marshall has a strategic plan that includes expanding its surgery unit. The possibility of adding cancer services and a women’s and family health facility is being explored. There are plans to strengthen Marshall’s ability to recruit physicians and bring in more specialists, particularly in the areas of internal medicine, pediatrics, oncology and cardiology. I notice they’re advertising in the West Central Tribune, among other media outlets, for a trauma coordinator and a director of clinic operations.

The sale of Marshall’s hospital (those of us who have been around for awhile probably still sometimes call it by its old name, Weiner Memorial Hospital) should be noteworthy locally for a couple of reasons.

First, there’s no way this move won’t have at least some ripple effect. Although health care ultimately is local, it also has regional implications. Will Avera’s stronger regional presence in Marshall lead to some shifting in the market? What will the implications be for Affiliated Community Medical Centers, which operates two clinics in Marshall and historically has been the main force behind Marshall’s physician workforce?

Second, yet another city-owned hospital in Minnesota has now come under private ownership. Only about one-third of Minnesota’s 151 hospitals are still owned by a city, county or other public jurisdiction, and most of them tend to be in smaller rural communities – Benson, for instance, or Litchfield or Granite Falls. As one of the largest city-owned hospitals in the state, Rice Memorial Hospital in Willmar has become somewhat of a rarity.

It would be natural to wonder whether Willmar might some day follow Marshall’s example and sell the hospital or convert it to a 501(c)3 private entity. It has been tried before, back in the late 1980s at a time of significant change and upheaval in the hospital industry. Voters resoundingly turned it down, however, and when the discussion was revived in the mid-1990s, it didn’t take long for the concept to once again be abandoned.

Under the Willmar city charter, a referendum by the voters is required before any change in the ownership of Rice Hospital can take place. There seems to be a strong sense of local investment in the hospital; when officials sought approval in 2002 to issue city-backed bonds to finance more than $50 million worth of new construction and renovation at Rice, the measure passed by a margin of 4 to 1. At the moment, it’s hard to imagine any circumstance that would alter this public tide of support. Not to say that it might not happen some day, given the right combination of events, but for now it appears to be extremely unlikely.

All communities, after all, have their own local politics and dynamics. Perhaps this was the best move for Marshall’s hospital, and one that will help strengthen the fabric of health care services in southwestern Minnesota. We wish them the best in the months ahead.

The crushing cost of a medical education

The students at Minnesota State University in Moorhead who met this week with Sen. Al Franken will probably graduate with anywhere from $25,000 to $65,000 worth of student loan debt. Some of them are working up to three jobs or postponing marriage plans so they can stay afloat financially.

And this is just for an undergraduate degree. Now tack on four years of medical school, plus a few years of residency and maybe an internship or fellowship, and watch the costs skyrocket.

The average medical student these days can expect to accumulate more than $150,000 in student loans by the time he or she completes training. Students who graduated from medical school in 2008 owed an average of $154,607. That’s an 11 percent increase from the year before. More than three-fourths of these graduates owed at least $100,000 in student loans.

It’s an issue of deepening concern. The American Association of Medical Colleges explored some of the implications in an article last year:

Medical student debt is threatening to become untenable for young physicians. Medical school graduates in 2006 found they owed about $130,000 on average when their educational bills came due. This figure is daunting even for those earning the estimated mean physician income of $216,000, and it can take years for younger doctors to reach that income level. Many primary care physicians may never reach it, as they earn an average of about 30 percent less than the mean.

When the financial bar is set this high, it can discourage many promising young people from even applying for medical school, especially if they happen to be from a lower-income family. According to statistics tracked by the AAMC, 55 percent of medical students now come from households in the top 20 percent of the income bracket.

It’s also having an impact on career decisions. After all, why choose primary care if it means you’re going to be paid less and will face greater hardship paying off your student loans?

Multiple factors are contributing to the growing cost of a medical education. One of them is tuition, which has been rising especially rapidly at public medical schools that once were considered more affordable. From 1984 to 2004, the median tuition and fees climbed by 133 percent at public schools and 50 percent at private medical schools – both faster than the rate of inflation.

The American Medical Association points to other factors as well:

- Interest accrued on loans over time significantly adds to the total cost of student debt.

- Students now entering medical school with more education debt from undergraduate education.

- Increasing numbers of “non-traditional” students who have children to support.

I’m not sure how well most people truly understand the extent of this issue or what’s at stake. There’s no getting around the fact that it’s expensive to educate and train the next generation of physicians. This is as it should be, if we want our physicians to be skilled and knowledgeable. It takes time, teaching resources and clinical experience. Surgeons in training, for instance, can’t just learn from a classroom lecture; the only way to become a good surgeon is to do surgery on actual patients and to have constant supervision, mentoring and feedback while the learning curve goes up.

We can blame the medical schools for continually increasing their tuition, but the fact is that it costs money for educational institutions to provide this kind of training. In the past, some of the extra costs associated with being a teaching hospital or clinic were borne directly by patients. Third-party payors no longer want to help foot this bill, so other sources have had to be tapped.

In Minnesota, medical education and research costs are subsidized by a medical education trust fund created in 1997 with money from the state’s general fund, the health care access fund and federal Medicaid money. Although the fund has undoubtedly been helpful, it is vulnerable to political tinkering, especially during times of stress on the state budget. Nor is the money really enough to fund the state’s largest teaching hospitals, mainly in the Twin Cities and Rochester, and have something left over for smaller rural training sites.

What can be done to rein in the cost of medical education and training? I’m not really sure. The AMA has been working on the legislative front to address issues such as student loan deferments, loan forgiveness and tax deductions and exemptions for medical school loans and certain types of scholarships. Scholarships supported by the private sector, such as a medical student scholarship program offered by Affiliated Community Medical Centers to help medical students with their tuition costs, are likely to become increasingly important.

Critics might argue that if someone wants a medical education, they should have to pay for it themselves. Or they might argue that if someone wants badly enough to become a doctor, he or she will somehow find a way to come up with the money.

Neither of these positions is really tenable. For one thing, it’s just not realistic. Holding down one or two jobs while going to school might be an option for an undergraduate, but this won’t cut it when it comes to the intense demands of medical school.

For another, it can easily slam shut the career door for promising young students whose only drawback is the cost. There’s frankly a very real risk that medicine is turning into a profession that can be afforded only by those from privileged or well-to-do backgrounds. Is this what we want? Or are we are better off when we have a physician workforce that reflects a variety of economic, geographic and ethnic groups?

The prolonged training required by medicine means that by the time someone settles into a career and actually starts earning a paycheck, he or she might already be more than 30 years old. To be sure, their earnings will quickly catch up and surpass the median wage – but doctors fresh out of training still have less time than everyone else to get financially established and save for retirement, plus they also have $100,000-plus in student loans to pay off. And as we’ve seen, these economic realities are having some influence over how doctors choose to specialize.

The bottom line is that no one can afford to think the crushing cost of medical school isn’t our problem or that it doesn’t affect patients in some way. It is and it does.

Photo source: Wikimedia Commons