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Them’s the Rules!

What do an amniocentesis and a public school have in common?  Funny you should ask…

Facebook is a mixed blessing.  If you dig through all the pictures of people’s kids, selfies in front of Cinderella’s castle, and what everyone ate for dinner, people put some really great stuff.  For instance, this article in The Atlantic from a couple of years ago: Thinking About Pregnancy Like an Economist, by Emily Oster. (http://www.theatlantic.com/health/archive/2013/08/thinking-about-pregnancy-like-an-economist/278874/)

The story is that Ms. Oster and her husband decided, like many a couple throughout history, to have a baby.  Both people being economists, they made this decision like economists.  Here’s Ms. Oster:

Ultimately, microeconomics is the science of making decisions–a way to structure your thinking so you make good choices. Making good decisions–in business, and in life–requires two things: the right data, and the right way to weigh the pluses and minuses of a decision personally. The key is that even with the same data, this second part–this weighing of the pluses and minuses–may result in different decisions for different people. Individuals may value the same thing differently. Making this decision correctly requires thinking hard about the alternative, and that’s not going to be the same for everyone.

Ms. Oster naturally assumed that any decisions she had to make during the pregnancy could be handled in the manner outlined above.  She assumed wrong.

Anyone who has been pregnant knows the mountain of dos and do nots that shower pregnant women wherever they go.  Don’t drink. Don’t eat deli meat. Don’t drink caffeine. Do get your triple screen. Do eat organic.  Don’t run.  Do run if you’re a runner.  Don’t sleep on your back. Do make a birth plan.  Birth plans are for sissies.  You know how it goes.  Ms. Oster ran into all of these, but she ran into something else: Medical Protocol.  In other words,” There are rules, Ms. Oster, and here in pregnancy land we follow the rules.”

In reality, pregnancy medical care seemed to be one long list of rules. In fact, being pregnant was a lot like being a child again. There was always someone telling you what to do. It started right away. “You can have only two cups of coffee a day.” I wondered why–what were the minuses? What did the numbers say about how risky this was? This wasn’t discussed anywhere. Then we got to prenatal testing. “The guidelines say you should have an amniocentesis only if you are over thirty-five.” Why is that? Well, those are the rules. Surely that differs for different people? Nope, apparently not (at least according to my doctor). Pregnancy seemed to be treated as a one-size-fits-all affair. The way I was used to making decisions–thinking about my personal preferences, combined with the data–was barely used at all.

Well, Ms. Oster, wait until your child goes to public school kindergarten.  You are in for a whole world of hurt, my friend.  Take, for instance, the requirement that all children have an updated physical exam from a physician every year.  Sounds like a good idea, and probably a good idea from a parenting perspective.  But as a blanket rule, is it really necessary?  Does the school nurse read every one of these reports?  Is there any data to support greater safety or superior learning in kids who have a physical exam on file in the office? Then there’s the lab work.  Every child must have a documented lead level at some point in their lives before entering kindergarten.  Why?  Is every kid in town vulnerable to lead poisoning?  If I have a completely healthy and normal kid what is lead screening going to tell me?  If my kid lives in a house built in the last ten years, has never eaten paint, and to my knowledge has never eaten any toy made in China, why do I need to subject my kid to a needle?

Sorry, I was ranting there for a minute.  The point is that people who enter the health care system (or the public school system) are subjected to a lot of arbitrary rules imposed by well-meaning people who have no data, or who once had data but that data no longer applies, or who just think “it’s a good idea”.  For some patients following the rules works for them.  For patients like Ms. Oster who, what with that PhD in economics and all, needs more data, doctors had better be able to come up with some.

Now, if you’ll excuse me, I have to go follow some rules.

Thought for the day.

A very personal piece, for your reading pleasure and maybe food for thought:

Here in Massachusetts the ad campaign for the state Lottery (and maybe it’s a national thing, I don’t know) goes like this:

YOU CAN’T WIN IF YOU DON’T PLAY.

This statement is true, so far as it goes.  If I don’t pay my dollar, I have no chance of winning a million dollars.  But there are a couple of corollary ideas naturally following the above statement.  Of course, given the statistical chance of winning the lottery, one such statement could be IF YOU PLAY, YOU’LL PROBABLY NOT WIN.  But there’s another idea that I believe has a much stronger visceral message:

YOU CAN’T LOSE IF YOU DON’T PLAY.

Humans naturally give more weight to the experience of loss than to the experience of gain.  Once we have something we are much more afraid to lose it than we were happy to get it.  Similarly, the pain of losing a competition often lingers far longer than the joy of winning, though I suspect this isn’t true for winning the lottery.  Why not?  Because the personal investment a person makes in a lottery ticket, a dollar or so, is relatively insignificant.  We don’t mind losing in the lottery because we haven’t put much out there at risk.

But what if what’s at risk is bigger?  What if it is a larger amount of money, or a job, or a life savings?  What if what’s at risk feels like life itself?

If you have a life that is comfortable, what you really have is a life that is familiar, a life in which you can control the variables and have a pretty good idea of the outcome of a given situation and, most importantly, a life in which your senses of self and identity are safe.  A comfortable life isn’t necessarily a happy one, or a fulfilling one, or the one you dreamed of,  but if you stay in it you are unlikely to feel threatened by much. You have your stuff and you want to keep it.  The comfort comes in not taking any risk.  The threat of losing, or failing, often feels much bigger than the prospect of fulfillment.

Say I’m a tennis player. (I am most assuredly not, but let’s assume.) I’m a good tennis player, and I’ve worked hard at it for many years.  Imagine that I get an un-seeded spot at Wimbledon.  I have spent years learning the skills necessary to compete in this tournament and I know I’ve worked just as hard as everybody else.  In fact, my entire identity thus far in life has been becoming a good tennis player.  I’ve been told by teachers that I’m a good tennis player.  I went to the best coaches and schools.

Imagine that I get the draw, and I find out I’m playing Roger Federer in the first round.  At this point I can consider my options: I can’t beat Federer if I never play him, but even if I play Federer the likelihood of beating him is very small, i.e, I’m likely to lose.

Now I have to ask: How big a blow is losing?  How big of a risk am I taking?  What am I putting out there for the world to see?  At this point my decision to play in Wimbledon or not will depend on how I think about myself in relation to tennis.

  1. Is there anything to gain from playing Federer?  Might I learn something?  If so, maybe I should just get out there and see what happens, even if I am temporarily humiliated.  I win experience, if not the match.  With this view, I feel like I’m not really risking much, but I can potentially gain greatly for the future.
  2. If I feel like I am risking my very life, that my entire sense of self will be destroyed if I lose, if I can’t stand what people might think of me, might it not be better to withdraw from the competition?  After all, I can’t lose if I don’t play.

The outcome of most of human’s lives rests on which perspective is taken.

I got a social disease!

Ladies, the moment you have all been waiting for is here!  No, not affordable childcare.  Not equal pay for equal work. Not gun control.  Not abortion rights or paid maternity leave or a female majority in Congress or a constitutional ban on the word “chicklit”.  Girls, it is so much better than all that.  We got pink Viagra!

Flibanserin.  Catchy name.  Addyi for short.  Approved by the FDA for that horrible disease called Hypoactive Sexual Desire or, for clarification, Inhibited Sexual Desire, Sexual Aversion, or Sexual Apathy.  The New York Times Health Guide defines this “disorder” in the following way: (www.nytimes.com/health/guides/disease/inhibited-sexual-desire/overview.html)b

Inhibited sexual desire refers to a low level of sexual interest.  A person with ISD will not start, or respond to their partner’s desire for, sexual activity.  It often occurs when one partner does not feel intimate or close to the other.  Communication problems, lack of affection, power struggles and conflicts, and not having enough time alone together are common factors.  ISD can also occur in people who’ve had a very strict upbringing concerning sex, negative attitudes toward sex, or traumatic sexual experiences.

No way.  You can take a pill for the disorder called Brought Up Baptist?  Here’s more:

Illnesses and some medications can also contribute to ISD, especially when they cause fatigue, pain, or general feelings of malaise.  Commonly overlooked factors include insomnia or lack of sleep, which can lead to fatigue.

Wait.  Is the problem that I have Inhibited Sexual Desire or that I just want to go the f%^$# to sleep?

The FDA actually rejected Addyi twice, in 2010 and 2013.  The reasons cited included the fact that it doesn’t really work.  Women who took it didn’t experience an increase in desire on a daily basis, but did have one more “satisfying” sexual experience per month than the placebo group.  Plus, it has side effects, like low blood pressure, fainting, nausea, dizziness, and, hilariously, sleepiness.  And, it has a boxed warning that the drug should not be used by people who drink.  Which is problematic, to say the least.  But, no worries.  The pink Viagra can only be prescribed or dispensed by practitioners who have watched an online slide presentation and passed a test of their comprehension.  So, thank God for that thorough education at least.

So why did the FDA decide to approve Addyi this time?  The same reason children are still getting gunned down in elementary schools: lobbying money.  Plus the deployment the biggest money word there is: Sexism.  Some women’s groups have accused the FDA of sexism for not approving a women’s libido pill while sanctioning a men’s version.  Or rather, a few vocal women have.  Prominent Washington feminists, together with the (female) co-founder and CEO of Sprout Pharmaceuticals (the company that makes the pill), the president of the National Organization for Women, and the help of a public relations company, managed to convince some people in Washington that the FDA was being discriminatory.   A very effective social lobbying campaign sealed the deal.

What all these feminists have missed is the very sexist labeling of yet another normal human female function as a “disease”.  Men can get Inhibited Sexual Desire, too, but no one is talking about that “problem”.  (Viagra, by the way, is not a libido enhancer.  It is an erection enhancer.)  All of this looks very much like a mirror image of the Victorian-era belief that women should, in the immortal, and paraphrased, words of Queen Victoria, “lie back and think of England.”

Low sexual desire in women is, if it is a problem at all, a symptom, not a disease.  Some women don’t desire sex and are fine with it.  For everybody else it is a normal response to normal life problems.  But, hey.  Maybe there’s a pill for that too.

Wow.

My kids have a book about a mouse who goes to school with a purple plastic purse.  At least I think it’s a mouse.  She goes on various adventures and at one point her school teacher says: “Wow.  That’s about all I can say.”

He might have been talking about Coca-Cola instead of the antics of a preternaturally verbal prepubescent rodent.  Actually they might be the same thing.  As Anahad O’Connor reports in the New York Times, Coke is having a “Wow” moment.  http://nyti.ms/1KZUZ4e.

Ever heard of the Global Energy Balance Network (GEBN)?  No, it is not a climate change organization or a fossil fuel advocate.  It is Coke’s new non-profit, and it promotes the argument that exercise is more important in weight management than diet.  It is a calorie, or Energy Balance issue.  On a global scale, I guess.  As GEBN says, according to O’Connor “Strong evidence suggests that the key to preventing weight gain is not reducing food intake, but maintaining an active lifestyle and eating more calories.”   That strong evidence? Two research papers, both funded by Coca-Cola.

OK, fine.  Coke is a grown-up company.  It can say whatever drivel it wants, and woe to the poor slobs who believe it.  The real rats in this case are the scientists who are going along with this nonsense.  They are, in no particular order:

Dr. Steven N. Blair, an exercise scientist, professor at the University of South Carolina, and vice-president of GEBN.

Dr. Gregory A. Hand, dean of the West Virginia University School of Public Health.

Dr. James O. Hill, professor at the University of Colorado School of Medicine, founder of the National Weight Control Registry, and the president of GEBN.

Here is what Coke has done: GEBN, supposedly an organization tasked with  informing the public about the real science of weight management, was the brainchild of Coke, is funded by Coke, the website gebn.org is registered to Coke, and Coke is the site’s administrator.  Coke has spent $1.5 million on GEBN, and Drs. Blair and Hand have received $4 million in research funding from Coke.  Dr. Hill’s institution, the University of Colorado, received an unrestricted gift of $1 million from Coke to the University of Colorado Foundation.

But the researchers are still in charge of course.  Here is O’Connor in the NYT piece, quoting Rhona Applebaum, chief scientific officer of Coke:

We partner with some of the foremost experts in the fields of nutrition and physical activity.  It’s important to us that the researchers we work with share their own views and scientific findings, regardless of the outcome, and are transparent and open about our funding.

As Dr. Hill says so eloquently:

They’re not running the show.  We’re running the show.

Uh huh.  Since we’re bull$&*ing, let’s hear from Dr. Blair, whose research on exercise has been the basis for many government recommendations:

Most of the focus in the popular media and in the scientific press is, ‘Oh, they’re eating too much, eating too much, eating too much’ – blaming fast food, sugary drinks and so on.  And there’s virtually no compelling evidence that that, in fact, is the cause.

That is about $3.5 million worth of bull$&*.

There’s plenty of evidence, in large studies NOT funded by Coca-Cola, that while exercise is helpful, diet is much more important. Read Aaron E Carroll from June of this year for some of this research (http://nyti.ms/1GGRsUY).  There’s the Population Health Metrics finding that while physical activity has, in general increased, so has the obesity rate.  There’s the New England Journal report that increases in protein and decreases in glycemic index led to sustainable weight loss.  Consider the research that casts doubt on the association between fat mass and exercise in children.  How about the study that showed that the physical activity of people in developing and industrialized countries was about the same, but the obesity rate was much higher in industrialized countries.  Or the consistent observation that regular exercise by itself in mild to moderate amounts results in modest weight loss or even in weight gain.

I could go on and on.  But, instead, let me just say…  Wow.

It’s Personal.

In 2013 Esquire magazine began a series of articles about Stephanie Lee, a 36-year old woman in Mississippi with stage 4 colon cancer.  It’s an incredible story, well-told by Tom Junod and Mark Warren.  You can find the first part here: http://www.esquire.com/lifestyle/news/a23509/patient-zero-1213/

The original point of the story was to discuss the path taken by Stephanie through the new world of Personalized Medicine.  The authors, having met Eric Schadt,a leading biomathematician, at Mt Sinai Hospital on a previous assignment, introduced Stephanie to Schadt.  Schadt offered to sequence Stephanie’s tumor and attempt to find a specific treatment targeted at her tumor. (Subsequent events bring up a whole separate set of questions about end-of-life care, medical ethics, hope, futility, and suffering that make the story thought-provoking reading.)

Personalized Medicine is all the rage right now.  The government is throwing money at it, to the tune of $215 million dollars.  The President of the United States himself is on board: “Personalized medicine represents a revolutionary and exciting change in the fundamental approach and practice of medicine.”

Dr. Ralph Snyderman, one of the very first advocates of personalized medicine, says the following, according to the New York Times (http://nyti.ms/1EgBvUY):

“Personalized medicine has the potential to transform our health care system, which consumes almost $3 trillion a year, 80 percent of it for preventable diseases.  It focuses therapy on individuals in whom it will work. You can avoid wasting money on people who won’t respond or will have an adverse reaction.”

Well, not quite.  Or at least, not yet.  Esquire is, of course, not a scientific journal and the authors therein are not scientists, but the story provides a taste of the kind of odds personalized medicine is up against.  Here is an excerpt from Junod and Warren’s story:

The first thing that needs to be understood about Stephanie’s data [her gene sequencing] is that there would be a lot of it. From the samples of Stephanie’s blood, the gene sequencers would generate the data about the genes in her “germline”—the genes (and the gene mutations) that she inherited from her parents and that existed in every cell of her body. From the samples sliced from her colon, the sequencers would generate data about her cancer and the mutations that produced it. But the data would be raw. It would contain millions of bits of genetic information, each one a sentence in the horror story that Stephanie’s cancer was telling—and all those sentences, at least initially, adding up to a bewildering Babel. The data would exist right on the edge of incoherence; then Schadt and his scientists would strive both to make sense of it and complicate it. That’s their trademark, and why they need a supercomputer. The genes that Stephanie was born with would be compared with the genes that were driving Stephanie’s cancer. The genes that were driving Stephanie’s cancer would be compared with the vast libraries of reference data-bases that already exist on all kinds of cancers. Then they would be plotted against the “network models” that the Icahn Institute is constructing, the millions of individual data points mined for their billions and even trillions of connections.

The result would not be dissimilar to the network model portrayed on the screen of Schadt’s office on the afternoon of September 10—a blue sphere of genetic entanglement that resembled nothing less than the universe itself, with each gene a blue star and with some blue stars off by themselves and some clustered into galaxies of cellular activity. The model on the screen happened to be a model of the genes involved in aging, but the model of the genes involved in colon cancer wouldn’t look very different. There would be a globe of blue stars. Somewhere on the blue globe would be plotted the mutant particularities of Stephanie’s cancer, in red; and though the red stars would cohere into a malign galaxy the relative size of Andromeda, they would be the target of the scientists gathered that afternoon in Schadt’s office.

I won’t reveal the punchline, but all of this data crunching took a year and a half, a multimillion dollar genetics laboratory, and a bunch of the top scientists in the world.  It cost hundreds of thousands of dollars (provided gratis by Mt. Sinai to their credit).  Does personalized medicine show promise?  Yes.  Is it giving people hope?  Absolutely.  Is it the Cure for Cancer?  Not yet.

A better PSA

*Sigh*

Can we not have this discussion again?  Can we just agree to disagree?

Prostate cancer screening is back in the news, at least for those who read the New York Times and don’t mind their OpEds more Op than Ed. (or more OpEd than evidence-based.)  Deepak Kapoor, an urologist, makes a great case for the PSA test: “But, guys, it’s better now!  Honest!”

http://nyti.ms/1LNo7dH

Read the comments.  Show us a real study.  Then we’ll talk.

The Problem With Internship

Every once in a while Sandeep Juhar shows up in the New York Times, and it is always a good read.  Today he talked about The Problem With Internship (http://nyti.ms/1IqHf03).  Since like Dr. Juhar my medical internship made a deep and lasting impression on me, akin to post traumatic stress, this topic is near and dear to my heart.  Juhar talks about the duty hour restrictions, limits on number of hours worked consecutively mandated by the Accreditation Counsel for Graduate Medical Education (ACGME).  These rules were implemented after several patient deaths were attributed to resident fatigue.  They’ve also been shown to be largely ineffectual at improving patient safety (http://jama.jamanetwork.com/article.aspx?articleid=2020371).  Additionally, attending physicians, who have completed residency and are supposedly in charge, have no such restrictions.  Witness my own regular weekend 24-hour in-house call.

The Problem With Internship is not that it sucks.  It is supposed to suck, interns know going in that it is going to suck, and they know what they signed up for.  They signed up because they expected to learn and learn and learn.  An intern is sleepless, has no social life, and eats cafeteria food three times a day, all for about fifty cents an hour, because he expects to learn and learn and learn.

The Problem With Internship is that interns don’t learn.  Or rather, they do but in the most inefficient way imaginable.  This is because the work that they do is not conducive to learning.  Interns are so busy writing notes and keeping up patient databases and signing off to each other that they see relatively little of actual patients.  As another of my favorite health writers Pauline Chen reported in 2013 that a study in the Journal of General Internal Medicine found that “interns were devoting about eight minutes each day to each patient, only about 12 percent of their time”. (http://well.blogs.nytimes.com/2013/05/30/for-new-doctors-8-minutes-per-patient/).

In order to learn medicine, or surgery, or whatever, you have to see a lot of patients.  Really see them, talk to them, examine them.  You need to see lots of the common disorders but you also have to see the really complicated patients, the really sick ones, the ones that take two hours to admit in a truly thoughtful way.  When the senior resident is operating on the appendectomy while the intern is updating the computerized patient list, that intern is not learning.  When the third-year anesthesia resident is doing podiatry cases all day while an attending solos on a trauma, that resident isn’t learning.  When the ICU resident knows that he has to start gathering all the data for morning rounds at 3 AM in order to enter it all into the computer, that resident is not learning.  Interns are being used by hospitals as cheap labor, a warm body in a seat or holding a retractor.  The goal of internship should be to learn.  The ACGME should be mandating the hiring of PAs, NPs, and other ancillary staff for paperwork, data gathering, and note-taking.  The ACGME should be requiring large amounts of real patient contact and truly valuable educational opportunities.  Interns won’t mind how many hours they work.  They will learn.

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