I’ve seen it too many times over the years – a patient with an ill-defined constellation of symptoms “makes the rounds” among medical subspecialists, eventually coming to me for an Endocrinology consultation. Oftentimes, this process has played out over the course of several years, leaving the patient frustrated, discouraged and exhausted, but nonetheless hopeful that the answer is out there.
When I see this person in my office, I desperately want to help her. This is my raison d’être, right? You’ve probably heard some physicians refer to their chosen field as a “calling.” While my career is somewhere on the spectrum between “calling” and “job,” my day-to-day satisfaction is intimately dependent upon helping patients in some tangible fashion, even if it’s just to help them achieve greater clarity about an illness I can’t make much better.
Let’s say that, after reviewing the above patient’s medical records and taking my own careful history, I conclude that the chance of her having a problem within my realm of expertise is near-zero. What would you recommend I do at this point:
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.
Before I dive into what I believe is the correct answer, I want you to note the thematic progression as you make your way from A to E. Choice A embodies the “binary approach” of many medical subspecialists: Does the patient likely have a problem within my field? Yes or no? When not paired with any of the other choices, choice A is unlikely to enhance physician job satisfaction. When used in isolation, it also has the potential to make the physician seem deliberately obtuse.
For example, I know a Neurologist who evaluated a patient who had recently been discharged from the hospital on a sizable dose of prednisone (a potent steroid). The working diagnosis from the hospital was Hashimoto’s Encephalopathy, a misleading misnomer that implies somehow the thyroid is playing a role in this central nervous system problem. Most of my Neurology colleagues know that Endocrinologists view this condition as a brain malfunction that gets better with steroids; it has nothing to do with the presence of thyroid antibodies. We call it a “steroid-responsive encephalopathy.” Regardless of whether HE is real or not, most Neurologists would probably agree that Endocrinologists are not experts in the treatment of encephalopathy.
In the above case, my Neurology colleague (appropriately) decided that the patient’s encephalopathy did not have a clear cause. He used the lack of a clear cause to justify his decision that her problem did not fall under the umbrella of Neurology and, therefore, was not his job. This illustrates a potential consequence of picking Choice A in isolation, where the doctor concocts a binary choice: is this my job or not? Given that her discharge diagnosis was “Hashimoto’s Encephalopathy,” he counseled her that the Endocrinologist would manage her steroid treatment, and he had nothing else to offer. 4-5 weeks later she landed in my office (yes, it takes too long to get an appointment), still on 60mg of prednisone daily, with no signs of encephalopathy. However, she had a litany of side effects related to the prednisone and was miserable. She had already been “dumped” by one specialist, so I didn’t think it would be appropriate to play hot potato with her, claiming that I don’t know anything about encephalopathy. During our visit, I excused myself and went hunting for a Neurologist to chat with, and we agreed that it would be okay to begin tapering the steroids.
What is the lesson here? While it may be the most realistic option for many encounters, Choice A (not my job) alone often leaves both patient and physician dissatisfied (I hope the above Neurologist felt dissatisfied). This is what leads clinicians to look at choices B through E.
Choice B (referring the patient to a different specialty) is a reasonable add-on to A; in fact, many of us do this every day. Although I’m not an expert in the treatment of sleep apnea, such a large percentage of patients I see have classic symptoms that I wind up sending at least a few people every week to Sleep Medicine. It is satisfying to see these folks at some later date, feeling much better once they’re on appropriate therapy.
As we move further down the list of options above, I need to exercise caution. Choice C (ruling out rare conditions), when approached judiciously, has the potential to reassure both patient and physician that no stone within the Kingdom of Endocrinology has been left unturned, within reason. There are literally hundreds of hormonal tests that the laboratory will be happy to run, but as I’ve written previously, you’ve got to know your assay and know your pretest probability. In other words, make sure that the chance of a false positive result does not outweigh the possibility of a true positive by a margin so great that it makes the decision to test look ridiculous. If you fail to do that, chances are you’ll be spelunking down various rabbit holes with nothing to show for it.
Choice D (running tests outside my area of expertise) is where I and many subspecialist physicians start to get into trouble. For example, on more than one occasion, I’ve sent patients off on a wild goose-chase to the local academic Hematology department for a porphyria workup. How did this happen? Well, the patient presented to me with numerous, nonspecific, non-localizing, seemingly disparate symptoms, so I decided to order a 24-hour urine for ALA and PBG (to screen for a condition called porphyria, which I admittedly do not understand well). When the levels came back mildly elevated, I was then stuck – I knew the elevations were probably false positives, but I don’t understand porphyria nearly well enough to counsel the patients to not worry. So I sent them to the only medical center in the area that knows anything about porphyria, and the unanimous verdict was that I don’t know what the heck I’m doing.
Why did I break my own cardinal rule about ordering tests I don’t know how to interpret? For that matter, why have I done it more than once?! It stems from the desire to help the person sitting in front of me, regardless of whether her problem falls within my area of expertise. Remember, the patient just wants to get better; she doesn’t care about the boundaries between Endocrinology and Hematology, Hematology and Rheumatology, or Rheumatology and Gastroenterology. The problem is, as we get farther into our careers as medical subspecialists, we move farther away from our general Internal Medicine training. That training included rotations in most – if not all – of the other medical subspecialties. As a result of that experience, we were at the top of our game when we exited Internal Medicine residency.
After years of subspecialty practice, however, our general medicine skills have deteriorated. This is to be expected, as it takes all of our time and energy just to keep up with the developments in our own specialties. In my view, it is exceedingly difficult to be an excellent Endocrinologist and an excellent internist. So I don’t practice or keep up with much general medicine. Should it be surprising, then, when I attempt to foray into a field I don’t understand and flail?
You can see how Choice D has the potential to lead physicians down a slippery slope. We may start with good intentions, but ultimately we haven’t helped the patient. It is a constant struggle to maintain our footing on this slippery slope when sitting across from a person pleading, “Please help me!” In my opinion, we need to temper our internal dialogue of “don’t just stand there, do something;” sometimes, it’s more sensible to “don’t just do something, stand there.”
Have I whet your appetite for exploring Choice E? Come back next week for Part II of this post, where I will dig into why good doctors go bad!
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Hello Dr HD,
Maybe I’m naive but then, I’ve been working in IT for close to 20 years and there’s aren’t many thing I am unable to work or build in computerland. Also, I have been involved in a brief bout of medical research (result here: https://www.ncbi.nlm.nih.gov/pubmed/21833294 ) and most of the medical doctors I saw or read about describe the major issue as trying to drink from a fire hose.
Is there something I can do to help tame that fire hose and make life easier? After all, my psychiatrist finally agree to write me up a recommendation letter for med school when I get to it so I have more than enough motivation to implement a solution considering I’ll be the greybeard among a sea of young guns…
Alain
Alain, I appreciate when a complicated patient comes in and says up front, “I’m not sure if what’s going on with me falls into your area of expertise, but if we can rule out an endocrine problem, I can accept that and move on.” That immediately sets the tone that:
1. This patient is reasonable.
2. This patient does not have unrealistic expectations.
3. I can spend all of my energy focusing on what type of problem the patient may have, instead of burning all my ATP refuting all the nonsensical internet research in which the patient is already invested.
#3 is really key. I am willing to concede that I may have seen people who had an endocrine problem that I couldn’t figure out, because they kept bombarding me with “but’s” when I tried to redirect them away from the adrenal fatigue and hypothyroidism that they surely didn’t have. When I spend all my time focusing on the negative (what they don’t have but are convinced they do), it makes it difficult to believe they actually do have an organic endocrine problem that I might be able to diagnose.
I do read (as opposed to hear) your concern.
Perhaps I didn’t communicate very well but first and foremost, I am a scientist (and also autistic) which mean, I do know the distinction between layman bringing adrenal fatigue papers as compared to what real science is which makes me the medical adviser of the family.
What I wanted to know, in order to help you is how to tame the pipeline. I had to read at a rate of 50 scientific publications per day and many times, about 2000 scientific publications for the single publications that I linked here and I was the one submitting to the primary author of that publication over 7000 abstract from which, she selected a few of them for me to analyze (I was clinically very depressed at the time, extremely even and could not dissect them by myself).
As far as my psychiatrist goes, we team up and share work. I do examine the scientific literature relevant to my treatments and I communicate all of that along with my state of being with him. This is one of the reason he offered me to write the letter of recommendation for med school (to be exact, grad school also because my future is being a medical scientist).
It is very possible that I didn’t communicate it very well but should I happen to be one of your patient, you’d find it very easy to work with me, and, I want to help you; should you need to face internal medicine outside the field of endocrinology.
That’s it.
Alain
Alain, I’m not sure I understand what you mean about how to help me tame the pipeline.
To explain myself in numbers, I did a short pubmed search of encrinology on pubmed:
https://www.ncbi.nlm.nih.gov/pubmed?term=%22Endocrinology%22%5BMesh%5D
It turn out there are 5557 scientific publication indexed into pubmed. A subset of these might be represented by opinion pieces, letters to the editor and such which may not be that important. This represent a good starting point to get acquainted with the field.
If I check the Internal medicine field, there are 85093 scientific publications at that point which is a way bigger task to get acquainted but it cover all the subspecialities of Internal Medicine (https://www.ncbi.nlm.nih.gov/pubmed?term=%22Internal+Medicine%22%5BMesh%5D). I can leave out all the subspeciality and cover the main part using this search for which I end up with 20735 scientific papers (Internal Medicine outside of all the subspecialities except Endocrinology):
https://www.ncbi.nlm.nih.gov/pubmed?term=(((((((((%22Internal+Medicine%22%5BMesh%5D)+NOT+%22Cardiology%22%5BMesh%5D)+NOT+%22Gastroenterology%22%5BMesh%5D)+NOT+%22Hematology%22%5BMesh%5D)+NOT+%22Infectious+Disease+Medicine%22%5BMesh%5D)+NOT+%22Medical+Oncology%22%5BMesh%5D)+NOT+%22Nephrology%22%5BMesh%5D)+NOT+%22Pulmonary+Medicine%22%5BMesh%5D)+NOT+%22Rheumatology%22%5BMesh%5D)+NOT+%22Sleep+Medicine+Specialty%22%5BMesh%5D
Please excuse me for the excess links.
That is a lot to cover in the lifetime of an Endocrinologist who _may_ want to cover the internal medicine which are currently not covered by subspecialists (cardio, ID, Sleep, etc..).
I didn’t figure in the time cost & commitment to get acquainted with associated publications in the realm of the basic sciences such as genetics and protein, epidemiology and other publications. I also didn’t figure in the others search engines such as google scholar or the clinical queries which can be made with pubmed but are included in these search results but which may be more appropriate for physician scientists (I worked for one of these back in the time of the publication I worked on) or for medical doctors adhering to the philosophy of science-based medicine for which, a higher emphasis is given on the basic sciences as prior probability (in the bayesian probability field) of a given treatment result when evaluating a clinical trial and weeding out “complementary and alternative medicine” (I refuse to use the term integrative medicine when referring to these) clinical trial as having very to extremely low probability of working. Evidence based medicine rank basic science results as the lowest rank of evidence there is and thus for the most part, can’t eliminate “CAM” result from consideration (but, which, obviously, medical doctors can eliminate these from consideration; not all of them do).
Finally, all of these results keep on growing and growing and which I refer as, the pipeline (or trying to drink from a fire hose). Basic scientist have the same issue. An issue for which, science & medical librarian alleviate (I admit I have no idea of their success rate).
I took cues from both, librarians as well as the Cochrane collaboration as well as my work in the publication I worked in to improve the matters and it will likely takes me some years to get around to a good solution but for some time, I was thinking about a business model where a number of my autistic peers and I would apply for public funding to help fund a collaborative curation effort on getting the best available evidence behind _real_ treatment and as much as possible, eliminate duplication of effort (the effort I put in for the publication done in the lab I worked in remain, in the lab; I’m off the opinion that the raw data should have been made available to the wider community. I would still be working on it to this day).
Alain
This touch my point:
http://theness.com/neurologicablog/index.php/computer-assisted-diagnosis/
Alain
This is interesting, though I would agree with the author’s assertion that this type of CAD would be more useful for identifying rare diseases than common, everyday problems. Another point is that electronic medical records which ask doctors to check boxes for the symptoms a patient has wind up creating a note that is near useless to the doc who wrote it, and anyone who comes after her. It serves more as a billing document for insurance requirements, as opposed to a document that conveys the chronological progression of a constellation of symptoms. I have to dictate complicated histories (as opposed to checking boxes for symptoms) or risk not remembering how the patient got from A to B 6 months from now.