The Unfixable Doctor-Patient Relationship

 

One of the commenters on my recent post, Low-dose Naltrexone – Hashimoto’s Cure or Powerful Placebo, said the following:

It’s STUPID, by-the-book doctors like you that I, and many Hashimoto’s patients avoid and feel contempt for, and whose opinions I throw into the trash immediately. Your blogs are now getting a lot of disrespect from one of the groups I belong to. Going so far as to say, by someone else, not me, that you should be reported. Good luck with your practice.

You’re a disgrace to the medical profession.

It’s not the most constructive comment I’ve received, but I’m glad she left it nonetheless.  It shines a light on the chasm that exists between lame-stream doctors like me and many of our patients.  In an effort to figure out if this relationship is salvageable, let’s see if we can understand why things go terribly wrong.

We are each thinking, “It’s not me, it’s you.”

The commenter claims to have contempt for doctors like me, avoiding us when possible, throwing our opinions into the trash on the rare occasions we must interact.  Why the contempt?  She’s not here to speak for herself (I’m open to a guest post from a reader’s perspective, for anyone interested), but I can guess.

It’s easy to see why people might have contempt for me when it comes to this venue, as my writing style is fairly confrontational.  But what about me and all the doctors who are seeing patients in the exam room, trying to help?  Obviously, there are physicians out there who don’t listen well or are poor communicators.  I can understand why patients get frustrated with them, but I want to focus on the doctors who listen, synthesize the information, and conclude “It’s Not Your Thyroid,” or something else that the patient doesn’t want to hear.

If you’re asked whether you want a doctor who practices evidence-based medicine, you’ll say yes.  But you don’t really want that.

It seems that one of the reasons why the commenter despises us is because we practice “by-the-book.”  I would proudly agree that I am a by-the-book Endocrinologist, which means that I practice evidence-based medicine.  That does not mean that I stopped learning after graduating medical school, as another commenter has suggested.  It does mean that I make diagnoses and treatment recommendations based on the best medical evidence available.  This evidence can be found in medical journals (not thyroid blogs), most of which are published on a monthly basis, chock-full of the most recent studies.  In addition to reading journals, doctors attend continuing medical education (CME) conferences, usually several times per year.  At these meetings, national and international experts in the field come to talk to us about the latest developments, what’s working, what’s not working, what we know, what we don’t know, and what directions need to be pursued for future research.

If I see a patient in the office and am not sure how to proceed, I can refer to clinical practice guidelines (CPGs), drafted by professional organizations like The Endocrine Society and American Thyroid Association.  These guidelines synthesize all the medical evidence on a topic to-date, and each recommendation in the guidelines is graded based on a standardized scoring system.  Recommendations based more on “expert opinion” than on high-quality clinical trial data are clearly graded as such, so clinicians like me know how much weight to give the recommendation.

Of course, there are plenty of times when a patient’s situation doesn’t fit neatly into a guideline; that’s when I use my clinical judgment, informed by evidence and honed over years.

Does that not sound like a reasonable way to practice medicine?  I suppose one could argue that clinical trial data from Big Pharma-financed trials is suspect.  I think it’s fine to be skeptical about the corrupting influence of money, but let’s not throw the baby out with the bath water.  Trials that are published in peer-reviewed journals are scrutinized by reviewers, editors, and readers.  These trials are also discussed in “journal clubs,” held at all academic institutions.  This is where a medical student, resident, fellow, or attending physician presents a single paper to a group of doctors, and then they all see if they can rip it apart or if it holds up (this is more or less how journal club works).  My point is, if you are going to dismiss medical research as hopelessly biased, we might as well just return to the days of drilling holes in the skull to release evil spirits (see trepanning).

There is always going to be some form of bias in research, folks.  It’s up to critical thinkers (like doctors) to recognize the bias and make an educated decision about how much that bias has affected the conclusions of said research.  The presence of bias does not mean, however, that tossing all that research into the garbage is a valid strategy.

Fringe practitioners will tell you what you want to hear; medical doctors will tell you what you need to hear.

Why do people enthusiastically adhere to what they read on blogs and what their naturopaths say, while sticking their fingers in their ears, scrunching their eyes shut, and screaming “Nah nah nahhhhhh…I’m not listening to youuuuuu…” when a well-educated physician tries to help?

I think it often has something to do with the fact that medical doctors are very good at figuring out what patients don’t have.  We are not always great at figuring out what patients do have.  Why?  Because there are usually a limited number of plausible diagnoses for most patients’ presenting symptoms.  If we test for everything that seems plausible (and maybe even a few oddball possibilities) and all testing is negative, then what we can do at that point is explain that we haven’t found objective evidence to support a diagnosis.  Of course, as I’ve stated in prior posts, I believe that many symptoms are related to lifestyle issues like poor diet/exercise/sleep and stress.  We can certainly test the waters as to whether the patient will be receptive to that line of thought; unfortunately, she typically is not.

Granted, our messaging could be better.  When I say, “I can’t find a hormonal explanation for your symptoms,” the patient often hears, “There’s nothing wrong with you.”  I can see how that would be frustrating, as patients like to feel validated, at the very least.  I now make a point of reassuring the patient that I believe her symptoms are real, but I just can’t figure out the cause.

The big problem here is when a patient has been told by numerous doctors, “I can’t find anything wrong with you,” and then a naturopath, “functional medicine” doctor, or other fringe practitioner comes along and says, “I know exactly what’s wrong with you.”  The patient loses faith in conventional medicine and is likely to call into question the validity of all the negative test results.  What often goes unsaid is that the fringe practitioner is making a diagnosis based on…what?  Instinct, symptoms only, dogma, manipulated data, etc.  The approach lacks any semblance of intellectual rigor, but people eat it up, because it gives them what they want to hear – answers.  Sadly, most of these “answers” will prove to be wrong, over time.

Using the above logic, medical doctors would have much better relationships with our patients if we would just hand out more diagnoses.  Unfortunately, the Hippocratic oath doesn’t work that way.  So what can we do to help patients when the by-the-book approach fails to elucidate a diagnosis?  This is where it gets incredibly challenging, especially when patients are convinced they have a hormonal problem and completely resistant to the idea it could be their lifestyle.

I suppose doctors can start by making the patient feel heard, as I stated earlier.  We can also explain that we don’t know everything – it’s possible, for example, that there are undiscovered or subtle perturbations of the endocrine system which cause symptoms but won’t show up in our current testing.  Why not admit that?  It’s possible, right?  We should simultaneously be clear that, if we can’t find evidence of a hormonal disorder, then we can’t treat for one just because it sounds like that’s what the patient has (“hypothyroid” symptoms could reflect almost any condition, after all).  We can offer a sympathetic ear.  We can suggest other avenues for getting answers if we have other ideas.  We can offer to retest/revisit the issue if symptoms persist over time or worsen.

In my experience, however, none of the above will satisfy the type of patient who does her research using blogs and belongs to a forum that hates doctors like me.  And that’s why I’m afraid that our relationship is unsalvageable – her naturopath will always be the hero, swooping in with a ready diagnosis and a fist full of hormones and nutraceuticals.  As an evidence-based Endocrinologist, I will always be the villain – too stupid to make the right diagnosis and too insensitive to care about my patient’s well-being.

I just can’t see how there is a satisfying answer to this problem, but if anyone has it figured out, I’m all ears.  Comment below!

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14 Replies to “The Unfixable Doctor-Patient Relationship”

  1. i’m curious to know what is known about hormone RECEPTOR population variability. is it possible/plausible that there are individuals who have normal hormone levels but a paucity of receptors?

    1. Great question, jk. I had to do some digging on this one, as the last time I remember this coming up, I was still in training. I was unable to find anything really illuminating in the clinically relevant realm during my (somewhat) cursory literature search. I suspect that there is more about this in the basic science/translational realm, which I am not planning to explore at this time.

  2. I’m delighted to see you exploring this issue. Other blogs I read (and love) acknowledge the problem you describe, but do little to address it. It is not enough to say that doctors don’t do enough to interact with patients regarding lifestyle issues, and then expect people to somehow “get it” on their own and not end up turning to someone who does seem to “hear” them.

    The usual response is that doctors simply don’t have enough time to offer the counseling and support necessary to address lifestyle management. Hooey, I say! The doctor who supported me through my Type II diabetes diagnosis and subsequent weight loss journey, did so because she CARED. It took very little of her time, but she stepped away from whatever she was doing every Tuesday at my weigh-in time, to give me a thumbs up and a big smile. It meant a lot to me as did the support of the clinic staff.

    These days, I have moved to a city and get my medical care at a large regional teaching hospital where the doctors are quite impersonal and never even ask me how I am. They take no interest in my personal life. They are smart, polite and, well…cold. I dislike them all (I’ve switched a few times thinking I just needed to find the “right” one). I miss my former doctor so much and it has affected my whole attitude about health care. I know I’m on my own and if I weren’t such a natural skeptic and already steeped in the knowledge of how to manage my weight, I can see where I would easily turn to someone (anyone!) who would take a personal interest in me.

    My former doctor didn’t spend more time with me, she just made the time count. and she interacted with me as a woman, mother, community member–not as a disembodied bearer of test results. She also didn’t hesitate to refer me (specifically, not in some off-hand way) to various support services (I was having a personal crisis at the time) which made a huge difference in my being able to put it all together and accomplish the weight loss during this time of great personal stress. In contrast, my current crew cut me off whenever I venture into the personal (homelife for example) and simply tell me to see a psychiatrist. Look, I have every respect for psychiatry, but just because I have a couple of symptoms that can’t be easily explained doesn’t mean I have mental illness! In fact, the symptoms WERE explained later by a specialist and treatment has resolved them.

    So my point–and I DO have one : )–is that there is more to being a good doctor than good training. I don’t want to call this the “art” of medicine because that’s an argument used by the allies to try to discredit good science-based treatment, but outside of that, I think that is the crux of it.

    Finally, I am considering moving back to my small hometown so I can have my wonderful doctor back again. It really is that dramatic of a difference.

    1. Toad, thanks very much for sharing that perspective. I agree that there is much art in the practice of medicine. I feel like I can reeducate a fair number of my patients who come in bearing quacky references that they want me to comment on. But I have not found any “in” with people who are absolutely convinced they have high/low cortisol, or some other such nonsense. I’ve tried patiently listening to make them feel heard, but in the end, they always leave unhappy. Maybe I’m just hopeful that there are some as-yet undefined magic words I could say to get through to these folks. After years of practice, you’d think I would accept defeat already.

  3. Thanks for writing this, I’m glad to have stumbled on it.

    My lengthy two cents: I’ve seen primary care doctors, naturopaths, and specialists in the past, and spent a lot of time going to doctor appointments and hospitals for my family, and this really hits the heart of the doctor-patient relationship that I have not seen a lot of doctors write about or address. I might be unfixable for some, but like any relationship, it definitely takes two to make or break it. One of the biggest revelations that I’ve had through all the time I’ve spent in doctor’s offices and hospitals is that getting good healthcare can be incredibly challenging for patients if they don’t have a doctor that will take them seriously. And I’ve seen a lot of jaded doctors as well, either because they’ve seen so many patients that don’t follow treatment they’ve recommended or are flat out combative (one of my doctors was very surprised when I came back with weight loss after she said I was pre-diabetic, saying that most people don’t make lifestyle changes after the news).

    Speaking just from my experience, naturopathic doctors fill a need that patients have to be heard and to feel like they can be in control of their health that a lot of medical doctors are not providing. I seriously think this is a pervasive problem in healthcare, especially with a lot of chronic illnesses that don’t have sufficient research yet, and naturopaths are, unfortunately, filling that void (it doesn’t sound like its the case with you, but this is a general observation). I have gotten treatment that actually WORKS from doctors, but it took me going through 4 different primary care doctors and seeing an endocrinologist to find someone that addressed my concerns. The two naturopaths I saw, from the first appointment, took extra time to educate me, answer my questions or address treatment requests without being condescending or dismissive. I didn’t have my Hashimoto’s thyroid looked at until the 4th primary care doctor I saw, and she knew to test for it based on my symptoms, which no one else did. The endocrinologist I asked to be referred to after my doctor was dismissive of my PCOS symptoms was the first to actually listen to me, do the bloodwork, and educate me on what was happening and how I should address it. It gets even more complicated with issues like PCOS where not all doctors agree on what the treatment plan should be and different things work for different people (it took me 5 years to figure out what works for me).

    For patients in general, it is incredibly frustrating and demoralising to have something wrong with you and not feel like you’re making any progress on getting better, and there are a lot of chronic conditions that don’t have convenient answers. I’ve taken it out on my doctors when I’ve been frustrated, which I’m not proud of, but it has happened. I imagine it’s frustrating for doctors, too, that people expect them to magic away their problems easily, but its part of the job. It’s convenient to cling to something if it sounds true. I did that with the adrenal thing until my endocrinologist talked to me, and she suggested what I’m describing is more likely depression. I wouldn’t have pursued a mental health practitioner had she not recommended it (which is uncommon), and I’ve been doing so much better since then.

    Just my overall perspective/experience on this. Unfortunately, like some chronic conditions, I don’t think there’s a convenient magic pill to solve a doctor-patient breakdown, but I assume like any relationship it takes communication, patience, work, and a willingness to listen to one another. Both doctors and patients could benefit from doing that.

    1. Thank you, Waffles (if I may call you that), for sharing this. I think you hit on some key pain points where the doctor-patient relationship breaks down. On my end, I’m only going to bang my head against the wall so many times before I give up on someone who is insisting she has adrenal fatigue. If I can’t get through to this person after patiently explaining the difference between good medicine vs quackery, then I absolutely fit the bill of the “dismissive doctor” when I wrap up the visit and move on. I’m perfectly willing to listen, I’m willing to validate a patient’s symptoms, but what I’m not willing to do is validate what she believes she has and what her naturopath has told her, when it’s all nonsense.

      It saddens me that intelligent folks (like yourself) wind up having a more satisfying experience with a naturopath, mainly because they do a better job than medical doctors of listening and hand-holding. The problem, of course, is that much of what they say about hormones may sound right, but it’s completely wrong. But if their bedside manner is good, people will believe it.

      I’m impressed that your endocrinologist suggested you might have depression, as we tend to get gun-shy about mentioning that after people yell at us over and over, “You just think I’m crazy and this is all in my head.” I’m even more impressed that you listened and heeded her advice.

      I think patients like you and doctors like me should be able to have productive relationships.

      1. This is a really nice post and a worthy one to have a discussion about.

        ===I’m impressed that your endocrinologist suggested you might have depression, as we tend to get gun-shy about mentioning that after people yell at us over and over, “You just think I’m crazy and this is all in my head.” I’m even more impressed that you listened and heeded her advice” ===

        I actually really needed to hear this from my doctor, because I had been in CBT therapy before, I didn’t have any shame about it . I was in bad shape after thyroid cancer and I didn’t even realize that I need psychological help until I couldn’t work properly anymore. I think I could have prevented some of those issues by some therapy earlier in the process. Instead I embarked on following my TSH, T4, T3 religiously (I already wrote earlier how I almost fell for the T4/T3 thing), tracking my lack of concentration, depressed feelings, joint pain, tiredness (I also told the doc about this), hoping that some ideal blood test balance would finally restore my normal self.

        Interestingly, at no point did my doctors suggest that I need some help from a psychiatrist, even though quite many cancer patients need some psychological help at some point. With my current thinking I feel like I would have been happy if I was told that, hey, this is a tough period, but it will get better, or, if it doesn’t, we could explore this or that option. It would probably also help with the feelings of control – if you know there is a plan of some sort, that the doc is keeping an eye on you and acknowledging how you feel, that alone would be major improvement.

        I guess it could also be a case of mental ilness stigma in my native country. Maybe I am now looking at the situation with different eyes and maybe doctors saw something in me that told them I wouldn’t listen, I really don’t know. But I do see why many people in such a situation will fall for naturopaths and their like 🙁

        I also realize it must be so irritating to have patients who will come to you with a copy of the latest “What doctors don’t tell you” magazine and clarify the latest research for you:) But I think it can also be a case of too hasty labeling patients without knowing enough about them? What do you think about the situation I described and what could I have done to make it better? I realize I may be biased in how I remember it and what my doctor thought or said or how I interpreted, but it would be interesting to hear some feedback.

        1. BL, the situation you describe actually scares me and gives me hope at the same time. It scares me because I have seen countless patients who have presented similarly, who I felt like I couldn’t help. Perhaps I was too hasty in labeling them resistant to the idea of primary depression, and that scares me.

          Your situation gives me hope at the same time, as you make it clear that there are those who are willing to “put everything on the table,” including mental health. Over the years, I’ve developed the impression that mental health is off the table for most of the patients I see who are optimized from a hormonal perspective but still symptomatic. Maybe I need to recalibrate my attitude.

          I’m not sure I have enough information to tell you how you could have made your doctor-patient relationship better, but I would just say I think you seem pretty open-minded now, so you are probably on the right track.

          1. I think you are quite open-minded (the blog itself is a sign of wanting a discussion), but it probably never hurts to question one’s approach every once in a while to avoid thinking patterns that might not be 100% true, and this applies to both patients and doctors.

            I thought a bit more about this and came up with an idea about how to talk to my current doctors if anything similar happens again. I suppose I could clarify at once that I’m a skeptic, that I support EBM and that we can talk about lifestyle factors as well as mental health issues. Maybe that way I give a clear signal that the doctor can be honest with me and I don’t intend to run off to a quack who will just tell me what I want to hear.

            I was also wondering – is there some sort of a mechanism how being hypo for a long time can trigger depression that doesn’t resolve as soon as the T4 dose is regulated? Quite frankly, when thinking about possible recurrence, cancer itself is not what scares me the most, having to go hypo for RAI and feeling so poorly for a long time seems a lot worse, but how likely is that is to happen? I would turn to a therapist sooner and I also know there is Thyrogen that would allow a shorter hypo period, but I’m not sure how likely it is to be prescribed. Back in my native country the doctor said it is better to go hypo naturally for the first RAI. Not sure if that was evidence-based or simply a result of limited number of shots available per year (I think there were about 30 state compensated injections purchased that year, so not all patients can have it).

          2. BL, I think some of my best, most productive visits have been with people who came straight out and said they believe in EBM. They asked my opinion about quackery, but they did not ask me to engage in it. So your idea is a good one. Set the expectation up front that you are reasonable and willing to listen to educated opinions.

            As to your question about depression and hypothyroidism, look for a post that touches on this next week.

            As for RAI, most of that is done using Thyrogen nowadays, with no stopping of the thyroid hormone. However, many recurrences of cancer will be dealt with surgically, +/- RAI after surgery.

  4. As an evidence reviewer (for the federal government) and very mainstream nutritionist, I really appreciate this thoughtful blog and comments. I believe that one of the factors that strengthens some folks’ determination to take their medical advice of naturopaths, chiropractors, and herbalists is these practitioners’ touting of their use of “natural” vitamins, minerals, herbs, and other supplements, instead of those “unnatural” pharmaceuticals. Nevermind that “natural” has no real meaning; that aflatoxin, mycotoxin, snake venom, nightshade, and the like are all as “natural” as can be – and all deadly; and that virtually none of the supplements touted to treat any ailment have the tiniest evidence base. When I’ve tried to explain to folks that their naturopath or chiropractor sells them vitamins because she can’t prescribe prescription-grade pharmaceuticals, most of them look at me like I have two heads! All I can do is keep reviewing the evidence and preaching to those who want to listen…And by the way, although I haven’t kept up with the thyroid literature at all, the letter writer who asked about receptors might want to check into the scientific literature on thyroid binding globulins.

    1. Great points, Sydne. What’s really frightening – in my neck of the woods – is naturopaths have prescribing authority and often serve as primary care providers for my patients. So not only do they sell a bunch of nutraceuticals that still require detoxification/metabolism by the liver, they can also prescribe things like hydrocortisone for “adrenal fatigue.”

      Glad to hear you haven’t lost the drive to keep banging your head against the wall. Every now and then, you probably get through to someone and save that person from harm (or at least from spinning their wheels on treatments that won’t help).

  5. I think one thing to remember is, for the patient who’d like to know about themselves in detail, there is a very unfavorable signal to noise ratio in terms of accessible but high-quality information vs. alt-thyroid madness. I feel like one of the things that kept me from going full Kharrazian was that after our first visit, my endocrinologist gave me a fat stack of printouts with good information about my disease, and also recommended “The Harvard Medical School Guide to Overcoming Thyroid Problems,” when I asked him for further reading. Because I had read those, I found a lot of inaccuracies & mistakes in the work of authors like Mary Shomon & various bloggers– conflating different types of thyroid disease, misrepresenting how common various problems were, being extremely wrong about how thyroid disease works, etc. When you think about it, one of the best selling disinformation thyroid books is “Why Do I Still Have Thyroid Symptoms When My Labs Are Normal?” What if you, as a doctor, had a handout titled, “My Labs Are Normal, But I Still Feel Bad,” that contained quality information instead? That would have been of a lot of use to me. Is there any reason a doctor can’t borrow the terminology of wellness, and put out brochures with titles like, “Optimize Your Health and Energy,” that discuss sleep, exercise, relationships, and stress instead of gluten, glutathione foot cream, and subluxations?

    When it comes to suggesting that mental health care is the next step, phrasing is going to be everything. My endocrinologist (who I came to have a great doctor-patient relationship with) often asked very bluntly, “How is your mood?” I remember once, answering, “Not great,” and he asked, “And what are we doing to manage that?” “Nothing,” I replied, to which he then very dryly said, “Ah.” It made me feel like it was normal– something he checked up on in the same way that he asked me whether or not I was constipated. Most people aren’t used to thinking of managing their mental health as a practice. The way my endocrinologist discussed it made me feel like my good mental health was a thing that needed maintenance, not just the presence or absence of a problem.

    1. Sadie, your comment is an instant classic. It should be its own post, so that I can link to it as relevant opportunities present themselves in the future. Every word rings true, and everyone who reads it should take heed.

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