Jul 2, 2010

The Doctors In The Ivory Tower

After spending the last month on sex, drugs, and rock-n-roll Doctor D is back to discussing hardcore medical issues:

Sick Momma asks,
"Everyone tells me I should go to Mayo Clinic or Johns Hopkins. Are the doctors there so much better?"
If you travel to Hopkins or Mayo you are basically paying extra for "name brand" medical care.

Is the name brand better than the regular stuff? Sometimes, but often it's just more costly for the exact same thing. The docs in those places have all published a lot of studies or are recognized names in their field.
"I am the chairman of Medical Expertology at Ivory Tower University, and I am never wrong about anything."

The Academic Brand
Doctor D's time in the ivory tower of medical training revealed to him that the biggest brains in medicine aren't always the best at caring for patients.
Some super-experts will be good at the bedside, but quite a few of them suck at actual doctoring.
Occasionally the super sub-sub specialist expert will know something useful to you that your regular working doc didn't know, but this is more rare than you think. Academic abstraction can also prove a distraction from the simple problem-solving that is often needed. If your car isn't acting right a regular mechanic is usually a better choice than the mechanical engineer at a big name university.

The SuperClinics
The Mayo Clinic is a bit different from academia. They are more hands-on than academic. Superclinics like Mayo pride themselves on being a Mecca for VIP patients.

From anecdotal stories from patients I know who went to Mayo my impression is that they do a lot more tests than most doctors. More tests can be a double edged sword. If you've been reading AskAnMD you know that more care isn't always better. Doctor D has a relative who had a very bad outcome at Mayo after what sounds to have been excessive, unnecessary testing.

In the end, big brand name hospitals and clinics will often do the same tests or treatments your local doctor would do, but the diagnosis or cure is considered more "brilliant" or "amazing" just because it happened Mayo or Hopkins.
A lot of people go thousands of miles to get the exact same care they could have gotten down the street.
Generally speaking I would advise people to work with local resources first.

Only if you are told by the you local docs that you are beyond their abilities would I suggest you look into the big names.
Often the primary doctors and specialists in your own area are more convenient and just as good for your needs.
What do you think? Do any readers have first-hand stories from the "Ivory Towers" of medicine? Did you go for a rare disease or a common problem?

Do you think that the care there was superior to the care you could have gotten in your own city?


Anonymous said...

When I was diagnosed with cancer, many family and friends assumed that I would travel thousands of miles to get the "best" care. I think they would have found it reassuring if I had done so. It has become part of the media story of cancer that a patient will journey great distances to seek expertise. I had to point out to them that I already live in a very large city filled with every sort of medical expert.

I know people with my sort of cancer who DO travel far for their medical care, and they are offered the exact same tests and treatments that I am, with outcomes that are no better and no worse. But these patients feel better knowing they are working with a big name, and that gives them a comfort that is valuable in its own way. (Unfortunately, one of them actually suffered a severe surgical injury at the hands of a resident working under the name-brand "expert"; it left him partially paralyzed for the remainder of his life. Mistakes and unforeseen complications can happen anywhere.)

If a patient does choose to see doctors who are far away, I would just point out that it can be expensive and wearying to return for follow-up appointments. Travel is not so easy when you are ill. Sometimes patients have the distant expert advise their local doctor for follow-up care after the initial work-up or treatment, but this can be problematic to coordinate. You don't want to add more difficulties to your life when you are seriously ill if you don't need to.

Anonymous said...

I'd like to add to my comment above (9:54 am) that my case involves a rare cancer. Only a handful of doctors have published anything about it. Thanks to the internet, these doctors now attract a large proportion of the patients with this type of cancer who are able to travel. The notion of "expertise" can become a self-fulfilling prophecy. Everyone with this cancer finds out that everyone else is going to see so-and-so and thinks they ought to do so too, and afterward they advise newly diagnosed people on internet forums to do the same.

In deciding where to seek treatment, for better or worse, I emphasized finding a surgical oncologist with excellent cutting skills rather than the person who had published the most. Sigh. . . . There are no guarantees, people. You may try to find the best surgeon, but you can't control the choice of the anesthesiologist and everyone else on the operating team, and those folks are crucial to the outcome too.

One more thing: I once met a wealthy man with cancer who was determined to buy the very best care from the very best experts. He was upset that (a) his wife was exhausting herself constantly chasing down medical records and having them copied and sent everywhere else and trying to keep all the doctors in different places informed and up to date, and (b) in his experience (I'm sure this is not always the case), he said he was often handed off to assistants who worked under the supervision of the big name doctor. He came to feel that these "experts" were just the doctors who were best at self-promotion. A jaded view, to be sure!

Glen said...

The main advantage I see for the patient is *speed* of diagnosis and disposition. One can easily spend 3 months or more in a small city setting. Each physician orders and reviews test, and then make referral to someone else. This continues until a diagnosis is made, or the patient dies.

The big name clinics can generally compress this into a week. They have specialist on staff that otherwise are very difficult to consult. As stated, you may undergo more test, and pay more $. A fairly rapid diagnosis and treatment plan is a comfort, even if the outlook is not wonderful.

For complex conditions, and for the elderly with an extensive and complex history, a large "name" clinic is a Good Thing for diagnosis. There is probably also some advantage for treating rare conditions, or unusual procedures.

When possible, I favor treatment in one's hometown, and recovery at home. The superclinics do offer real advantages and may save considerable time.

A NURSE said...

In my psychology class years ago, we learned that if people paid a TON of money for something, they have increased satisfaction with it. In other words, the more you pay for something, the more you have to justify the expense, and thus the skewed satisfaction rating. Who would want to admit they paid five times what they could have close to home and got the same if not inferior service? :)

Anonymous said...

When I was diagnosed with lupus that had hit my central nervous system and was giving me seizures (as well as hashimotos thyroiditis) and several other auto-immune disorders - my husband at the time took me to the mayo clinic to see if THEY would have better answers.

Lo and behold - the rheumatologist there poked at my fingers and said, "just b/c you have a positive ANA is no reason to say you have lupus. He then took me off my medications. I then saw a neurologist who tested me on an EEG who said, "you aren't having seizures- you're having non-epileptic(pseudo) seizures- go home and stop having them.

I saw several other specialists who deemed me a big faker and sent me home with a psychiatrist who said I needed an anti-depressant (and I was NOT depressed- just really freaking sick). They took me off ALL MY MEDICATIONS.

I GOT SICKER. My husband divorced me b/c I acted CAA-RAAAZY (seizures and brain stuff).

I went back to all my former doctors who put me back on all my meds. My neurologist did another eeg and my seizures had spread and mirrored. He had to up my dose and said, "look - HERE ARE YOUR SEIZURES - DO NOT EVER LET ANOTHER DOCTOR TELL YOU YOU ARE FAKING SEIZURES."

My rheumatologist took me off the antidepressants b/c I'm NOT depressed - just sick. She put me back on all the lupus treatments. I went back to the endocronologist and I'm back on all the thyroid meds.

Let's just say- that the Mayo might be good- but b/c they TALK TO EACH OTHER - they also have one doctor saying something so they all follow suit- once they think you are "faking" or not sick - NONE OF THEM will check for themselves or go against another doctor.

Worst experience of my life. Took me another full year and my marriage to figure out.

Three years later - I'm only now getting stabilized in my auto-immune lifestyle.

Boo to the Mayo.

Anonymous said...

Mayo diagnosed me with a rare autoimmune disease that several others had missed. My experience has been that the doctors will do the fewest number of the least invasive tests to determine what the problem is, and then take the time to figure out how to fix it. Doctors actually take more than 3 minutes per patient -- the first time I met my internist and clearly had stuff going on that I wasn't getting into, he just leaned forward and said "look, I have all the time in the world. It's OK if you don't want to talk about it, but if you do, I'd like to help." He spent 90 minutes with me and gave me his home phone number in case things went to hell before I saw him again. I have never had anything but first-rate care there.

Yay to the Mayo.

Anonymous said...

I went through the Johns Hopkins experience for a surgical procedure not done everywhere. There were a few other brand name places I could have chosen, but as I have ties to Baltimore among the choices I had it was the easiest place to recover post-op (other than my home town). I've also experienced "local" hospital care for several other surgeries.

While there are some stellar individuals at Johns Hopkins providing care, the overall company culture is factory-like. Protocol-centered care - not the patient-centered care they tout. I've had better hospital care at the local level - and better more personal care from my local surgeons for sure. There's a sort of force-fit mentality - they've thought it through and decided that the process they have is good and right and really every patient must now conform to that process. Special orders do upset them - even something as simple as wanting to read a consent form ahead of time.

There is an awe of "brand names" most definitely. I would never choose Johns Hopkins for my care again - I would choose to seek care of certain individual providers who work there - but where they work is unimportant - the individual doc is the one I want - enduring Hopkins is part of that bargain - although one of them does also have privileges at another higher-end hospital in Baltimore - so I suppose I could ask to see him there, should the need arise.

I agree that places like Hopkins have their uses - for the rare and unusual - but everyday stuff - yes even cancer, (though horrible, is more often "ordinary" than not) - can all be handled as well medically - and far better emotionally - at the local level in my opinion. Unfortunately - the Hopkins & Mayos can't survive on only the extraordinary.

I will say that Hopkins wasn't any more expensive on the surface than other hospitals in Maryland. Maryland's state law has some sort of thing with insurance companies about reimbursements - I think all the hospitals' costs are reimbursed at a rate set by the state.

"A Nurse" is right, though, about the psychology of price. There are a number of studies showing that consumers (those unaware of the phenomenon) believe something is "better" when it costs more.

The psychology of brand is similar. It's interesting to note how much advertising and marketing all hospitals are doing these days to build brand. It's quite disgusting.

Anonymous said...

Oh, and why did you pick Bob Montgomery from Hopkins as your poster child? Personal bone to pick?

Doctor D said...

I had to google the name "Bob Montgomery" to understand the above comment, so no, I have no bone to pick. Chances are Dr. Montgomery is a wonderful guy.

Doctor D just googled the term "Hopkins Doctor" and that picture came up. With an epic beard like that while lecturing in a surgical cap how could he not be transformed into the Chairperson of Expertology?

Doctor D said...

By the way...

Doctor D should clarify that this post isn't to hate on big name medicine. There are some great doctors at these places and some rare conditions in which they really excel.

D was just pointing out that for most problems the "off brand" doctors in your area may be just as good or better than flying hundreds of miles to see the fancy big name doctor.

Anonymous said...

We get physicals approx every other year at Mayo (through an exec health program); mostly to create a baseline of health status. The thing that I appreciate about this -- can get full battery of tests for complete physicals AND results in a day or two (incl colonscopy (family history of colorectal cancer), complete breast imaging studies (family hx & self hx of breast cancer & cystic mastitis), and other odd-ball-not-typical-40-yr-old stuff). Another thing that we greatly appreciate -- our consultant (pcp) spends real time doing a hands on physical exam AND talking to us about the findings. The thing that I don't appreciate -- we're both quite healthy, exercise & eat well... really get the feeling that they're trying very hard to find something "wrong" or "worrisome" -- maybe so that we feel like we're getting our $$ worth?

Anonymous said...

So after getting good care from my local doctors, it turned out I have two rare heart problems that they knew very little about. If my heart had paused just a little bit longer I might not be hear, but luckily it was figured out my a specialist specialist who listened to me (the first one did not). I also see a very specialized neurologist because I get a rare kind of migraine, and he's the only doctor who's still convinced it's a migraine (which means he doesn't send me for any extra tests), and who has extra ideas of how to treat it (as I've tried all of the usual options).

That said, I went to big name hospital for treatment of my breathing problem (caused by another very rare heart defect) and was told that I could "be an experiement." I didn't want to be an experiment. However, if sounds like I might need to go back, as I still can't breath well. Ah, if only I could have something normal.

By the way I love your comparison to generic versus brand name drugs. I have a terrific local allergist, and have had a few terrific PCPs who make me still want to believe that there are some good doctors out there (local and otherwise) who are willing to think outside the box).

Anonymous said...

Hopkins has a violent rapist on their orthopedic staff. A lot of "academic" doctors are psychopaths who play politics and power games with each other; that's how they get to the top. Unfortunately, they play politics and power games with patients, tool.

SickMomma said...

Much belated thanks for tackling this topic, Doctor D! And thanks to all who commented as well! I can't tell y'all how much I appreciate hearing everyone's different perspectives. Now if I could just figure out what I should do and stop dithering ...

I suspect I'll wait until after I've seen a new neurologist locally before I even consider going somewhere else.

Queen of Optimism said...

Somehow I missed this post until today when SickMomma blogged more on this subject.

I have many conflicting thoughts on this subject. About a year and a half ago, I was in full agreement with my PCP that I could get the same treatment locally as I could at Mayo or Hopkins. After a lack of progress in diagnosis and treatment, I contacted Mayo and was convinced it was NOT for me because of how much deposit money they wanted up front just to review my records and reports and they told me they would repeat any diagnostics I had already received.

I contacted Hopkins because of their SICCA registry study that would include a no-cost lip biopsy I needed (per local doctor's advice) and I could contribute to science. Like one of the comments above, I have ties to Baltimore so it seemed logical. Through that process, the team learned about my symptoms, etc. and I was referred to a Hopkins doc to review my records. He's a specialized doc and I'm going to self-pay to see him. Hopkins made it clear from the beginning that I would need to make sure I have a doc here who is willing to work with this doc considering I am out of state. My PCP is excited about the opportunity to learn from this doc as she has been baffled by my illness for 6 years now.

In summary, I'm not going to Hopkins for the designer name or service. If it happened to be USA City General Hospital, that would be fine by me. I'm going because they think they can help me and that's more than I'm getting from my local docs. We'll see! I plan on blogging more today about this subject and my local neurologist's reaction to this news.

As always, thanks for the info Doctor D. I've learned so much from you!

Sending you a firm patient - doctor handshake. ;)

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