On National Guidelines and Recommendations

 

My pen pal on the SOAPM (Section on Administration and Practice Management for the American Academy of Pediatrics), Peter Pogacar, posted this article about the recent de-recommendation of mammograms: http://www.nytimes.com/2014/02/15/opinion/why-i-never-got-a-mammogram.html?_r=0

This article tells of misadventures of the author’s mother in getting her mammograms, being led astray and confused by findings and doctors and a system that were confused, scattered, uncompassionate, and not patient-centered.  She also talks about being distrustful of doctors because something similar happened to her when her son had a rare condition and the doctors were unsure and, it seems, disorganized. 

This raises a general question: can blanket recommendations – “guidelines” -- really work?

I have a friend who does mammograms as his almost exclusive province of work.  He is skilled and very sensitive to people and patients, and very careful.  The situation of vagueness, misdiagnoses, lost in the system, I'll call you in the next week or so to tell you whether you will live or die -- none of this would apply to my friend Jonny's patients.

So, because the national "average" is poor -- there are lots and lots of doctors and services that suck, we know -- does that mean that one should not get mammograms at Jonny's office?

This is the problem with general guidelines.

Take the case of PSA tests.  They are recommended against for many of the same reasons as mammograms.  But I have a urologist friend Joel.  I have full confidence that if my PSA rose -- it hasn't, thank you God-- but if it did, Joel and I would figure out what to do.  If I had higher anxiety, so be it.  I don't believe in willful ignorance.  Just because a busy and insensitive and perhaps a rather stupid and crass doctor somewhere else (many are, unfortunately) couldn't handle it, does that mean Joel and I shouldn't get this test?

Or take the new guidelines for statins and the treatment of lipid disorders.  My friend Steve is a lipidologist; that's pretty much all he does these days, because he likes to specialize.  He is livid about the new recommendations, as are many.  He gets personal -- the head of the committee is a Doctor Stone, and Steve tells me that people in his department in Chicago, I think it is, refer to him as "Pebbles."  Steve says the recommendations are so un-nuanced that they are virtually worthless.  Much of it looks at the "evidence-base," to the exclusion, Steve says, of reasoned clinical judgement.  Just because something hasn't been "thoroughly studied" doesn't mean you can't make judgements.  Maybe some issues are just too complex to have a national guideline.  Maybe some things really need to be looked at individually by good doctors.  It's too bad there are bad doctors out there who will do unreasonable things.  It's too bad that some drugs will be taken by millions of people and cost a lot.  But does that really apply to the individual situation?

Finally, take me.  I think I'm a pretty smart guy at times.  Years ago the Hepatitis A vaccine made its entrance to our scene.  I thought, great!  Now people can go to Mexico and eat oysters without getting a 5cc shot in the butt every few months.  But no!  "National guidelines" said that "everyone should not get this vaccine."  It was not "cost effective."  Hepatitis A "was not a lethal disease."

Well, not cost effective for whom?  I had well-off patients, and I was well off enough that $100 was OK to spend to avoid getting yellow and shrinking up and laying dormant for six months.  Just because every public agency in the country and some insurance companies didn't want to pony up the money didn't mean that in individual cases it didn't make sense.  Then they found that the incidence of disease in California was high enough to recommend it.  Then they decided to recommend it nationally.  Hell, it made sense to begin with!

And then we need to remember this: "guidelines" are issued by committees, people who get together, disagree, and finally come to on agreement with a statement that does not include the minority opinions of the group, nor the members of the group who quit in disgust at what was going on (this happened to the lipid group.)  These are compromise documents that suppress minority opinions.  Most breakthroughs and smart thoughts are at first minority opinions, often minority opinions of one.

So, pardon me if I take national recommendations with a couple of teaspoonfuls of salt.  I'm finding a good doctor, and I'm talking to him personally, I'm demanding good care, and the females in my family are going to avoid dying of breast cancer if it's at all possible.

Budd Shenkin