[HD: This is Part II of a two-part post. If you haven’t yet read Part I, please do so now, or this won’t make as much sense as it should.]
In Part I, I posed the question of what I should do after evaluating a patient and realizing that it’s not likely she has a condition within my area of expertise. I then proceeded to work through the first four options listed below:
A. Explain the various hormonal diagnoses I’ve considered during our visit and discuss why I don’t believe she has any of them.
B. Refer her to any other physicians I think might have something to offer, assuming I suspect a diagnosis that is not within my field (e.g. Sleep Medicine to discuss possible obstructive sleep apnea).
C. Run a few additional tests to “rule out” rare hormonal conditions that she probably doesn’t have, but are within the realm of feasibility.
D. Run additional testing that is outside my area of expertise, in the interest of getting closer to a diagnosis.
E. Tell her I’m fairly certain I know what’s going on with her, and reassure her that she’s going to get better.
When Good Doctors Go Bad
Finally, let’s talk about Choice E (tell the patient I know exactly what’s going on, despite a complete lack of evidence to back up my assertion). You know how a satellite orbits the Earth along a predictable path, held along this path by the Earth’s gravitational pull? Well, imagine that the gravitational pull malfunctions for a second – the satellite would shoot off its orbital path on a tangent into the darkness of space. This is choice E.
Years ago, when I was doing my fellowship in Endocrinology, I had friends who were fellows in Rheumatology. One of their attending physicians, a respected member of our academic institution, began making increasingly less plausible diagnoses. It seemed as if he simply decided what he wanted the patient to have; then, he would run tests and assign his preconceived diagnosis regardless of the results. Eventually, he left the department to strike out on his own in private practice. I heard he even wrote a book.
Take another example of a respected Endocrinologist at a well-regarded academic institution in the southern United States. A friend of mine was an Endocrinology fellow under this mentor and assured me that this doctor was intelligent and appeared to demonstrate excellent clinical judgment. This Endocrinologist ultimately wrote a book about the thyroid and struck out on his own in private practice, attracting patients from around the world. By happenstance, I evaluated a “hypothyroid” patient who had received her original diagnosis from this doctor. After reviewing her case, I was fairly certain that she did not have – nor had she ever had – hypothyroidism. Of course, this would explain why she had never felt any better after years of treatment. I obtained her original workup, which included something called a TRH stimulation test – something we don’t typically do in the U.S. for the workup of hypothyroidism. Regardless, the TRH test results were normal!
Currently, I sometimes see patients who have also seen a local medical subspecialist (let’s call her Dr. Jones) – not an Endocrinologist. This physician is well-trained, very smart, and often practices great medicine. However, she has cultivated a tendency to “think outside the box,” which unfortunately has led to frequent detachment from a normal orbit. Her patients can spend months or even years monkeying around with various “treatments” that ultimately fail to improve their health. Sometimes, they experience significant harm – I coined the term JIO (Jones-Induced Osteoporosis, a play on Glucocorticoid-Induced Osteoporosis), as some of her patients have inappropriately taken bone-destroying steroids for way longer than necessary.
So, what motivates these doctors to go rogue? Do they realize how far outside the mainstream they’ve strayed? Do they believe in what they’re doing? How do we reconcile the fact that they can vacillate between practicing sound medicine and quackery; does this make them good doctors, bad doctors, or is it more complicated than that?
Why They Go Rogue
In each of the above cases, these doctors were/are late career (the last 1/3 of a typical career-length); I think this distinction is important. When we first finish our training, most physicians are great at practicing evidence-based medicine, something that is drilled into us at academic institutions. As we gain experience in the real world, we see more cases that don’t fit into any neat pigeon holes; this is what helps our clinical judgment mature. After all, when there is no clear, right answer, we have to use our best judgment. Of course, our judgment should cull from a sound evidence base. The problem is, when a physician has been practicing for decades, the lines between evidence and personal experience become blurred. It takes discipline and effort to continually review the medical literature and challenge our assumptions and current practice style. If I’ve been doing something for 20+ years and I think it works, then it works. Right?
As an aside, if we extrapolate the above reasoning, you can see why naturopaths are rogue from Day One. They have little evidence-based training, as most of their field is based on theory, dogma, and personal experience of their teachers. This is why most naturopaths start out bad and just get worse.
In addition to the blurring of lines between evidence and experience, late career physicians have also accumulated more “zebra” (medical students are taught when you hear hoofbeats, think horses – not zebras) diagnoses under their belts. This has the potential to convince them that rare presentations of common diseases are more common than conventional wisdom would suggest. The Rheumatologist I described above might have fallen prey to this, diagnosing gout and other common ailments with a lack of supporting evidence.
The zebra diagnoses they’ve seen can also convince them that rare conditions aren’t as rare as one would think, leading them to hunt for problems that are unlikely to be present, at best. When doctors have been practicing medicine for a long time, their gut instincts become well-honed and well-trusted. If they have a strong feeling that a patient has something unusual, they might become invested in that diagnosis, even if test results suggest otherwise. After all, testing isn’t perfect; if it comes back negative, they could dismiss it as a false negative and make the diagnosis anyway. This might help explain why the Endocrinologist I described above diagnosed a patient with hypothyroidism, despite normal thyroid function studies, negative thyroid antibodies, no evidence for a pituitary problem, and a negative TRH stimulation test!
Another reason why doctors go rogue is because we want to help people, as I’ve already explained. But it’s more complicated than that. All three of the rogue physicians I described have created a cult of personality that feeds their egos, and that gets scary real fast. Take “Dr. Jones” for example, because I know her best. She is the classic BWOC (Big Woman on Campus). To our colleagues and patients who don’t know any better she speaks in pseudo-scientific language – which goes way above our heads and, therefore, sounds like she must know what she’s doing. I’ve checked with other physicians in her specialty who I trust, though, and guess what? She’s operating in a data-free zone.
But where do my colleagues send a patient who has something that defies diagnosis? Dr. Jones, the brilliant, outside-the-box thinker. Allow me to set the scene for that first visit: the patient has been bouncing around various specialties for months or years, with no answers. The patient then lands in Dr. Jones’ office and she says, with supreme confidence, “I know what you have, and I’m going to make you better.” For good measure, she even draws complicated diagrams of cellular stuff that the patient has no hope of comprehending, thus solidifying her godlike status in the patient’s mind. I have seen patients work with her for years, as she always has another rabbit hole she can drag them down when her first fifteen treatments haven’t worked.
The most frustrating part? They keep following her like lemmings. I believe that this also helps explain why my patients who have nearly been killed by their naturopaths return to the same quacks. The naturopaths talk a great game, proving that it’s better to look good than to be good. All you need is confidence; forget knowledge.
Rogue Doctors Have No Idea They’re Rogue
I’m sure there are plenty of quacks out there who deliberately mislead and defraud patients. I’m not talking about them. Rather, I’m referring to otherwise good doctors who sometimes do weird stuff. These doctors do not consider themselves fringe practitioners. They may admit that they think outside the box, but they wear that as a badge of honor. They probably even view their colleagues who disagree with them as too rigid.
I bet you the Endocrinologist who attracts patients from all over the world believes his own hype. If he wrote a book offering thyroid solutions, and that book has been widely read, and people who’ve read it flock to him from all corners of the globe, then he must be the messiah. That mindset helps explain the sense of obligation he must feel to these patients who see him. How could he possibly tell someone who bought his book and traveled halfway around the world to see him, “I’m sorry, but it’s not your thyroid.” I’m not saying he intentionally lies to people, but the pressure to have profound insight and give these people hope probably leads him to imply plausibility of a diagnosis where plausibility doesn’t exist.
Does Rogue Doctor = Bad Doctor?
It’s a simple question with a complicated answer. As I’ve explained above, these doctors can practice good, evidence-based medicine. The problem is, if you’re a primary care provider with limited knowledge of the rogue physician’s specialty, you can’t be confident that your patients are going to get good care. If you’re a patient seeing the rogue doctor, you’re essentially screwed, as there is no way a layperson is going to know if they’re embarking on a foolish treatment course.
But, there are plenty of times when thinking outside the box can be helpful. Although I’ve beat up on Dr. Jones, I admit that there are many patients who idolize her because she really was the only doctor who ever figured out what was going on with them and made them better.
So which is it – good doctor or bad doctor? I would argue that the best way to answer this question is to reframe it: “Would I send my wife/husband/parent/child to this doctor?” If we frame the question that way, the answer is almost always going to be no. Complicated made simple, right?
What do you think? Have you seen a doctor you eventually suspected of quackery? Are you a doctor who works with other physicians who do dubious things? Comment below!
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10 Replies to “Why Subspecialist Physicians Go Rogue – Part II”
I have endometriosis. I spent almost four years in my late 20s/early 30s trying to conceive and deal with chronic pelvic pain. Then I got pregnant with my son who’s now 2-1/2, but couldn’t breastfeed him. THEN I had multiple episodes of pain and bleeding every month after I weaned him and my cycles came back. This persisted until my hysterectomy at age 33, just before my son turned 2.
Have I ever seen a rogue doctor? I swear at this point, they come looking for me.
Everything you’ve just described is 1,000 times worse when it affects a woman’s reproductive organs. There MUST be a psychological component, or at least a nutritional one. I have been told everything from go vegan to go gluten free to do yoga to get counseling for my anxious personality that was the root of all my pain (that last one was a urogynecologist who had set up shop next door to naturopaths and sounds a lot like your allergist). When trying to breastfeed my son, I was told things like have my husband massage my shoulders to stimulate milk ducts nearby and help me relax enough to transfer the milk. Not one of those quacks mentioned my breasts are basically textbook cases of insufficient glandular tissue and no amount of massage or relaxing would make them grow more milk ducts.
I now have a pretty low tolerance for doctors like those you describe. They do nothing but waste time and lay the blame at your feet for not trying hard enough to make useless therapies work.
Meanwhile, my left ovary was attached to my left ureter and my right ovary to my pelvic muscle wall by scar tissue and endometriosis. My doctor who did my hysterectomy described this gnarly state of affairs the day after my surgery and added, “That was probably the cause of a lot of your discomfort.” No, really? No wonder I trusted her.
Yes! I have endometriosis too and I’ve had horrible cramps since I first got my period. Most Gyno’s just kept pushing birth control pills “to help with cramping”. Bullshit! Didn’t help one bit. They would totally dismiss my symptoms of having cramps so bad that Id vomit and Be on the floor in agony. I had a Gyno tell me my cramps were from being sexually confused. I was like “Confused about what? That I’m a lesbian and don’t know it? Um, no! I’m pretty sure I’m straight. I like penis thank you” it took me years -until my late 20s- for a nurse practitioner to finally say that not only do I have ovarian cysts ( that rupture) but most likely have endometriosis.
I also was seeing a Psychologist for a while and I had to stop going because his therapy consisted of me sitting in a chair and trying to find my meridians/chakras and what color was it and let’s see on my chart what the color meant blah blah blah. He also kept trying to refer me out to Quacks the get my Chakras realigned and use Chromotherapy ( color/light therapy). I’m surprised he didn’t offer butt reflexology and a side of coffee enema to cleanser me of my negative “energies”. But I couldn’t do it anymore. I guess I should thank him though, because of his therapy I now despise Alternative Medicine and am skeptical of everything.
Ugh, I’ve dealt with more quacks than I can to remember. Where I practice there are a lot of “functional medicine” doctors and “anti-aging” doctors. They prescribe all sorts of wacky things, and trying to convince patients that it’s not practice is akin to blasphemy.
To back stuff up to your previous post for a moment, as a primary care internist, I hate it when subspecialists refer my patients out to other subspecialists. I’d rather them just send them back to me. As you said, the sub specialist’s general internal medicine skills are a bit rusty, so it’s very likely they might not even chose the right type of other specialist to send the patient to. It’s also how care gets more and more fragmented and more and more expensive.
Great points, PCD. I think my worst (most inappropriate) referrals have historically come from Neurology, where the doc says, “Hmmm, this sounds like it could be vaguely hormonal in nature; let’s refer you to Endocrinology.” The hit rate for Endocrine problems from those consults has been maybe 5%.
As you said, the sub specialist’s general internal medicine skills are a bit rusty, so it’s very likely they might not even chose the right type of other specialist to send the patient to.
Excuse the swearing but I see that everyfuckingwhere. Out of 6 boss in the last 10 years, 3 have been MDs and two of those MDs also have PhDs (those two are psychiatrist) which is a microspeciality in itself to the point that the first inline (the one having diagnosed me autistic) deferred to another trainee to prescribe me valproic acid after the second diagnostic (bipolar). after 3 years, he retract the second diagnostic.
The current one is reassessing me (mostly because of taxation purpose) but his reassessment have taken 2 years so far (1 consult every two month with lot of reading and research about my case in between). He’s excellent but it took us 7 years to work together with a very critical eye and lot of critical thinking from him to come up to the point that the previous psychiatrist was wrong; which, in itself, took a lot of hard work on my part.
Subspecialist here. I agree with you that PCPs should be playing quarterback. However, I would add the caveat that you should share you cell # with your specialists so that we can call you.
It’s cruel to ask someone who waited to see you and then waited to see me then be asked to wait to see you again so that they can wait to see another specialist.
The fragmentation of healthcare along with the grinding slowness is one of it’s biggest weaknesses.
Totally agree. In fact, sometimes the only way I could leave the exam room – as yet another specialist with no answers – was by promising to call the PCP to try to come up with next steps, and also promising that either I or the PCP would call the patient with that plan.
This is such a great article. I am a physiatrist, and while I love my specialty, we have a limited evidence base for many issues (esp with chronic pain) and our fair share of quacks. We are also a dumping ground for many cases that have been through the multi-specialty work up to no avail. On the plus side, I have good training in the practical aspects of managing the patient with unsolvable problems. Also, nobody really expects us to make the breakthrough diagnosis–patients are often sent to me after they have had an extensive w/u with no clear diagnosis, and I know that they (the referring physician, if not the patient) are asking me to help with symptoms rather than solve the problem, so I can be more pragmatic in my approach. Just found your blog recently btw–it’s great!
Thanks for the compliment and for sharing your perspective, Ann. I find it interesting that your patients are more receptive to the idea that you’ll be able to help with symptoms but not necessarily diagnose or solve the underlying cause. That must be extraordinarily helpful for being able to move forward with the treatment plan.
Yes…although my treatment plan generally includes getting the patient to exercise in some capacity, and nobody ever wants to do that!