In medicine, the patient is not always right

In medicine, the patient is not always right

Beginning with the Institute of Medicine’s (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.

The IOM prescribed a number of recommendations to redesign health care delivery, one calling for patients as the source of control over their care. “Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them,” the IOM recommended, noting that patients should have access to their medical information and to the latest and best available clinical knowledge.

Boatloads of information now float around about the quality of hospitals, doctors and health care providers, and the risks and benefits of various tests and treatments. Perhaps there is even too much information, making it hard for consumers to separate the good from the bad.

Nonetheless, though much of this newly created information to help patients navigate the medical system is far from perfect and increasingly too commercial, it has given patients, a.k.a. consumers, a sense that wow, they may be in charge of their medical destinies after all. For a prime example, think direct-to-consumer drug ads! They really work!

A study by the Kaiser Family Foundation a few years back found that people do just as the ads direct them to do — ask their doctors about the promoted drug or procedure. And yes, doctors increasingly give people the drug or the test that they want. Is that the kind of patient-centered care the IOM had in mind? What if what a patient demands isn’t evidence-based or isn’t best for that patient at that time for that problem?

Last week I was visiting with a New York City primary care doctor who had just seen a patient. What he shared with me about their encounter suggests this business of crowning consumers kings and queens of the medical marketplace may have a very big downside that gets little attention, perhaps because it doesn’t fit the narrative of patient-centered care.

A trim, young man, age 29 who worked in the financial industry and exercised regularly, came to see this doctor. He said he was having dizzy spells and was worried about having some neurological disease. The doctor spent nearly an hour with him, taking tests, doing a thorough examination, and concluded there was nothing that warranted any of the neurological studies the patient was demanding.

The next day, the man was scheduled elsewhere for one of those super-duper executive physicals that frequently come with high-paying jobs. That physical also showed no abnormalities requiring further examination. Yet the patient persuaded the second examining physician to give him a referral for an MRI, which later uncovered nothing to explain his dizziness.

Still not satisfied, the young man called the first doctor again just to be sure there was nothing wrong. Not yet convinced he had received appropriate care, he also wanted to discuss his symptoms. Perhaps they were caused by stress from his high-wire job, the doctor told me. The doctor also noted that this patient must have racked up over $5,000 in costs to the health care system, all paid for by his employer or by his generous employer-provided insurance.

Why does this matter to the doctor? He will be paid for dispensing his clinical judgment. But in the brave new world of health care consumerism, patients have also found a voice. They fill out those patient satisfaction surveys, and they write reviews on Internet consumer sites like Yelp. “If I get bad reviews on Yelp or low satisfaction scores, I get fewer patients or the insurance company cuts what they pay me,” the physician said. So, he added, some doctors have resorted to just giving in to patients’ demands even if their clinical judgment tells them otherwise. That’s hardly good medical practice, but that seems to be what medical marketing campaigns encourage, putting them in conflict with the broader aim of the IOM report for quality over quantity.

I checked this doctor’s reviews on Yelp. They were glowing except for one. A patient complained the doctor had “refused three different types of testing that I required.” She told visitors in Yelpland that the doctor said the “results wouldn’t help me” and he made fun of the “little co-pay I pay. This man and his practice need an attitude adjustment.”

What’s a doc supposed to do with reviews like that? Give in to the patient? What’s a patient to do? Avoid a fine doctor who is not keen to overtreat? In medicine, as in other realms of marketplace transactions, the patient is not always right.

Maybe the concept of patient-centered care needs an adjustment. Perhaps we need a new definition of what it means fifteen years after the IOM report first brought it to public attention.

Trudy Lieberman is a journalist and an adjunct associate professor of public health, Hunter College, New York, NY. She blogs on the Prepared Patient blog.

Image credit: Shutterstock.com

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  • Guest

    Great and important piece. There is a significant and important downside to patient centered / consumer driven health care which is rarely discussed. Those who bring it up are shunned.

    Done correctly, patient engagement will make care more personalized and
    caring. Implemented or designed poorly, the trend of recasting the
    patient as consumer could wind up making more problems with many of us
    driven to less than desirable behaviors of obesity, debt, and inactivity
    simply because that is “what we and the consumer market wants” – http://www.davisliumd.com/recasting-the-patient-as-consumer-good-idea-from-stanford-healthcare-innovation-summit-2013/.

    But if increasingly people (patients) want to get and hear what they want to hear, this poses a significant problem. We saw this in the financial services when people were approved for home mortgages with purchasing homes with no money down or even income and traders / investors taking risks. Those loan officers who told prospective clients were penalized. Those traders / investors who didn’t take risk were penalized. The harder thing to do was to spend more time, tell people why they didn’t qualify. The harder thing to do was for traders / investors not to invest their clients’ money in derivatives or other assets not understood even as those same clients withdrew money finding other groups who did what they wanted.

    This issue is the culture. Malcolm Gladwell observes the cultural piece here – http://youtu.be/7rMDr4P9BOw?t=59m34s

    Over the past few months I’ve noticed a particularly disturbing trend.
    Patients are not consulting doctors for advice, but rather demanding
    testing for diagnoses which are not even remote possibilities. A little
    knowledge can be dangerous particularly in the context of little to no
    clinical experience. Where many patients are today are where medical
    students are at the end of their second year – lots of book knowledge
    but little to no real world experience.

    More patients are becoming the day traders of the dot.com boom.
    Everyone has a hot stock tip, only now it is “be sure to ask your doctor
    for this test” or “ask for this medication because it is the only one
    that works”. Everyone is an expert with his own suggestion on what
    should be done. If a medical expert, like a doctor, weighs in and does
    not agree, then there is a set of patients and doctors who begin to argue that these doctors are out of touch or arrogant. http://davisliumd.blogspot.com/2011/07/are-patients-becoming-day-traders.html

    Do we as a country want doctors to be trusted advisors and the willingness to say no? Or do we simply want them to be so focused on giving what people want even if it isn’t in their best interest?

  • JR DNR

    If the guy is having dizzy spells, there is something wrong (even if he just has an electrolyte imbalance). Of course he’s mad if he is dismissed and told not to worry about it. That’s not an answer to what’s wrong!

    The one thing my doctor does that I’ve never experienced before is amazing follow-up and reassurance, and I think it’s exactly what this patient needed too.

    “This looks like X. If it is, this is what you should do for treatment. This is how you should improve with treatment. I want you back in X days for followup to make sure you’re doing better. If ABC happens, I want to see you sooner.” I leave every appointment with a follow-up scheduled.

    Doctors assume that if a patient continues to have symptoms they’ll come back, but patients don’t always know that’s what we are supposed to do.

    • Kristy Sokoloski

      I have kept my Primary Care Physician very busy in the past 2 years for different things that have had to actually be treated. So I do exactly what I am supposed to: go see my Primary Care Physician when I have problems and concerns that need to be addressed. But at the same time, every time that I do this I still feel like I am bothering him even though he keeps reassuring me that it is all right. So, I try to make sure I remember that but sometimes it’s hard because I have had doctors in the past where I did exactly as I have been doing with my PCP but yet in not so many words that let it be known to me that I was a bother to them. After you have been burned by something like that you tend to learn to be extra cautious and think twice about whether you really need to see the doctor for the problems you know need to be cared for.

    • rtpinfla

      Sometimes we can’t find anything wrong. That’s OK. It also doesn’t mean we need to order a battery of tests and X-rays just to prove we are not “dismissing it”. The original doctor spent an hour with the patient. That isn’t dismissive in any sense of the word. Sounds like the doctor went the extra mile to reassure the guy.
      You are also correct that good follow up is important. Patients that go doc to doc after a single visit will waste more time and money than not. Now of course, if you really feel that your doc is missing something than yeah, switch. But if you get the same answer with the same reasoning from doc #2, #3,and #4 maybe it’s time to settle down.
      Regarding what the patient wanted in the article- It sounds like he got reassurance from multiple doctors. He received thorough histories, a battery of tests, and finally the all-important MRI- all which revealed nothing serious.
      So where is the line? A thorough exam, an hours worth of face to face physician time isn’t enough. Then a battery of tests isn’t enough. He finally gets the MRI and….nothing is wrong, but still not enough. What else should be done for this patient? How much reassurance is adequate?

      • JR DNR

        Where did I say he needed a battery of tests? Oh, I didn’t, because that’s not what he needs.

        The doctor reported to another person he thought the symptoms were “just stress”. That’s being dismissive. And that can come across to the patient very easily.

        • rtpinfla

          First, I was referring to the patients desire for tests- not you.
          Second- if the doctor spent 5 minutes with the patient without doing a good exam and said, I might agree with you that the doctor was being dismissive. But he spent almost an hour with this patient. If the patient feels that not getting the “correct” answer after an hour long visit is being dismissed, then I’m not sure what else anyone can do for that patient.
          So where, exactly is the line? What do YOU think the physician should have done different? That is, beyond spending an hour with a guy. Should he have spent another hour going over everything again? another 2 hours?

          • JR DNR

            The doctor says they spent an hour on it, they can’t do anything, case closed.

            That’s exactly the problem I addressed in my first comment. It’s not case closed to the patient.

            I offered an alternative suggested path. Reassure the patient that most causes of dizziness to not progress to serious disease. Discuss a treatment plan (what to do when a dizzy spell is encountered). Schedule a follow-up to make sure the patient is improving. Let the patient know what symptoms are serious and warrant immediate follow up.

            The result of this method is that the patient feels believed. The doctor wants to see them again for followup even if they don’t get sicker and improve. The patient knows they are welcome back if they do not improve. The patient knows the doctor is “in their corner”.

            Sure, a follow up appointment might be wasted money. But a follow up appointment is much cheaper than an MRI!

            When the doctor tells someone not to worry, doesn’t recommend follow up, doesn’t suggest to come back if the symptoms don’t improve… the patient feels abandoned.

          • rtpinfla

            Your point about follow up is well taken but I’m not sure why you think this patient should feel abandoned.
            Re read the paragraph that says the doctor “concluded that the patient did not require the testing the patient demanded”. That’s it. You cannot assume that the doctor told him to never come back, they can’t do anything-case closed. Where does it say case closed? And how are you so certain that the very things you recommend weren’t discussed- including when and for what to came back for re-evaluation-weren’t discussed during that hour long visit? You are leaping to a conclusion to make a point that isn’t supported by the article. In all likelihood the patient was told all the things you suggest during that hour long visit (which is way more time than the average patient gets, by the way)- you may say that I’m making a leap also but I think it’s safe to say that they weren’t talking about the Yankees or Mets. They spent an hour talking about dizziness.
            Bottom line- the original physician was correct, the patient did not need an MRI.

          • JR DNR

            The doctor failed to figure out what the patient needed. The patients needs weren’t met, so the patient went looking elsewhere.

          • PCPMD

            In your world, does there ever come a time where what a patient wants (a cure, let’s say, for an incurable condition), simply doesn’t exist? Or is it always a dismissive doctor that stand’s between a patient and their wants?

          • JR DNR

            Why are you so frightened by a patient suggestion on how to convince patients not to seek further testing?

          • rtpinfla

            It sounds like you have a good relationship with your doc and that’s great. And you are correct, reassurance and follow works for many patients- probably most of them. Although your insight as to what works for some patients is appreciated you are not speaking from experience beyond what you know works for you. If you had to see patients like this regularly you would understand that not every patient thinks like you. In fact, very single one is different and some of them simply cannot be satisfied until they get the test that their neighbor or Dr Oz told them to get. Since you haven’t had the experience of seeing 20 patients a day for many years like most of us have you will just have to trust those of us who have.

          • JR DNR

            I’m sorry you’ve given up.

          • rtpinfla

            What exactly did the patient need? Either a diagnosis, more testing, or reassurance. I’d submit he got an hours worth of discussion and reassurance. There’s a pretty good chance he also had follow up. And yes, what he wanted was an MRI.
            I see a couple of patients like this every week-not for MRI’s but the same idea- and no amount of reassurance is enough. Even with prolonged discussions and yes, good follow up, many of these patients go elsewhere- not because they don’t get an answer- I give them their answer. But it isn’t the answer they want. So they move on to the next doc. I sleep fine knowing I did the right thing for the patient. They will end up getting the tests they want somewhere but, in the end, it never changes what they have or how it is managed.
            So you are actually correct. The patients needs for additional testing wasn’t met, so he went elsewhere to get his needs met and the MRI was normal.
            Again, the patients needs were met appropriately. It simply wasn’t the answer he wanted so he moved on.

          • JR DNR

            If you approach it as a battle where you win by not giving out tests… yeah, that’s not a good approach. The fact that patients go elsewhere doesn’t surprise me at all.

          • rtpinfla

            It’s not a question of winning or losing or a battle- “battle” is a word of your choosing, not mine. It’s simply a question of the appropriateness of a test. And if I feel that the test a patient wants will not be helpful or may even be harmful, why would it become a “battle?” because the patient says so? That’s simply absurd.
            But if you want to couch this in terms of win/lose… If anything I lose by not ordering inappropriate tests in my clinic. I lose the time I spent discussing my reasoning with the patient because that ALWAYS takes more time than simply ordering the test. I lose my good reputation when the patient leaves and tells everyone what a horrible doctor I am, I lose anywhere between $500-$1,000 that I would have made by testing that patient. That’s right, I lose money by doing the right thing for the patient.
            Do you think for one minute I enjoy all that hassle just to “win a battle?”. Do you think I enjoy losing money and risking my reputation just to be ‘right”? You once again are making too many assumptions about matters of which you know not nearly enough to comment on.

          • JR DNR

            Look at how you are reacting to a suggestion to not do a requested test and schedule follow up instead. Why such a strong reaction? Why is that suggestion offensive?

            I’m arguing the same thing you are: the test isn’t necessary.

            I’m just giving one suggestion on a way to handle those requests that is effective with many patients.

            PS – Seriously, how in the world would you know what my credentials are? Even if a poster here has credentials you respect, that wouldn’t change the validity of their ideas. That’s known as an “argument from authority” – I have x credentials therefore my statements are correct”. Dr Oz is a doctor, so everything he says is an expert opinion correct?*

            * = sarcasm

          • rtpinfla

            I haven’t questioned your credentials; I have no idea who you are. In fact, making fun of Dr Oz let’s me know you’re actually a pretty OK guy (or girl). Just saying that your assumptions are incorrect.- e.g. Physicians withhold tests to win a battle.
            However, I feel pretty confident that you haven’t had to deal with the patients that are outlined in the original article. Yet you seem to think that all these patients need is a hug and a follow up and all will be alright (and we don’t know that the original patient didn’t get a follow up appointment, I bet he actually did). I’m telling you that, for some patients, no amount of reassurance, follow up, or anything else will satisfy them if they think they absolutely need some test, or an antibiotic, or whatever. Should physicians give every patient lie that everything they request? Absolutely not- that is the whole point of the original article.

            And the patients to which I am referring always are instructed to either come back in 3-4 weeks or call sooner for any problems. That is a standard policy in my clinic. Yet the patients that feel that they needed test X or Y don’t come back for those follow ups. Why? Because I clearly don’t know what I am talking about in their estimation because I didn’t do those tests right out of the gate. So should I feel good that I “won” that battle?
            Follow up appointments are not offensive and I’m not the least bit offended by that. The suggestion that I’m withholding tests to win a power struggle or a “battle” is actually very offensive.

          • JR DNR

            I still think “I spent AN HOUR with this patient” as hyperbole spoken to a colleague while complaining about a patient who obviously isn’t sick and just has “stress”. Based on that response from the doctor I can’t for one minute think they took the complaint seriously.

            I agree the guy shouldn’t have had an MRI and probably didn’t need further testing, I just suspect it’s a “he said she said” situation where we’d get a very different story from the patient.

            There was actually a study recently on throat surgery outcomes that compared how well the doctors thought it went to how well the patients thought it went and well, there is a lot of disconnect there.

          • JR DNR

            Just an additional thought. Scheduling follow up has another benefit: It makes the patient feel more responsible to follow their treatment plan.

  • ninguem

    “Nice reputation you have there. Shame if anything were to happen to it.”

    You see, those negative reviews are followed by spam e-mail from companies that point out to you, that bad review in the various physician rating sites, to make sure you know about it, followed by offers to make it go away by various tricks.

    I had a bad review on a physician rating site…..and I know exactly who it was, a disgruntled drug-seeker……and that bad review was followed within a few days, by repeated e-mails from companies that claim various tricks to make the bad e-mail go away.

    For a fee of course.

    I am becoming increasingly convinced, that the physician rating sites, and the reputation defense sites, are one in the same, or working hand in glove.

    • Lisa

      I think physician rating sites are just a waste of time. How can I form an opinion on a limited number of reviews, without actual data about the doctor’s results? It seems to me as a consumer that the sites are just forums for advertising, which I am totally uninterested in. Bah…

    • SarahJ89

      I find physician review sites useless and don’t bother with them. For starters, the information patients need to make any sort of informed decision (how many of X procedures/year; mortality/morbidity rates, etc.) are routinely withheld from us.

      But doctors should understand that most people can put a bad review into context. We do it all the time when we read reviews on Amazon, TripAdvisor, etc. It’s not that hard to cull out the outliers and look for patterns in a given body of reviews. It’s no different on physician review sites.

      Now, if your Corporate Overlords insist upon using one bad review in a group of a dozen your problem isn’t with the patients or the review sites.

  • HJ

    If I see a comment about a doctor who didn’t order demanded tests, I would consider that a plus. Why is it assumed that patients look at all negative feedback the same way? I look at comments and decide if that is something that would bother me.

    I have brought vague symptoms to my doctor and when a cause was not quickly found, the symptoms were ignored. While the patient in the post may not have needed and expensive MRI, he did need something that was lacking in his care.

  • Eric Strong

    If linked at all, average patient satisfaction of a physician and his/her patients’ health outcomes are inversely related: http://www.ncbi.nlm.nih.gov/pubmed/?term=22331982 In other words, the more satisfied a doctor’s patients are, the worse care the patients are actually receiving. It’s because of two main factors:

    1. Doctors giving in to patient requests for medications that are not indicated and potentially harmful.

    2. Doctors giving in to patient requests for tests that are not indicated. A positive test result in a patient with a low pretest probability of disease is likely a false positive, but will result in more testing; any of these tests can carry risk of harm. I’ve literally seen patients die as a direct consequence of unwarranted testing.

    In my opinion, if one were to use Yelp or other similar sources to choose a doctor, the sign of a good physician would be a highly divergent set of reviews, such that most are glowing and highly positive, and a small minority are extremely negative. This suggests the doctor is likely to decline inappropriate and dangerous meds or tests to the small minority of patients who are unreasonably demanding, but is otherwise very good. Unfortunately, most review sites have only a tiny sample size of reviews for an individual doctor, limiting the statistical validity of such an approach.

  • JR DNR

    I don’t know what you mean by “pathology”.

    Being dizzy has a negative impact on someone’s quality of life. IE – it’s a problem. Just because our science isn’t good enough to identify the cause of every episode of dizzyness doesn’t mean that a patients quality of life should be dismissed offhand as being unimportant.

    • Kristy Sokoloski

      What he means by pathology is “disease” process. Sometimes, one can become dizzy if they are dehydrated as well. Also, sometimes some medications (if one is taking medications) have a side effect of dizziness. Also, when a doctor says that it can’t be found: the cause that is I don’t think that it’s necessarily intentional that they are saying that the symptom is unimportant. They are just trying to say that they can’t find anything wrong with the patient. And yes, it is frustrating when the patient can’t get all the answers that they need. That’s why sometimes patients go to several doctors to try and get an answer if one can be found. There are also a number of psychiatric illnesses that have physical symptoms such as dizziness and even pain that can come with it. Does that mean that the patient’s problem is in his head (as in to say that he’s making it up)? No, it does not.

      Unfortunately, sometimes it can be years before the true cause becomes manifest and when patients don’t get the answers they want really fast it gets upsetting. Part of the reason, I feel that some patients expect that the answer is going to happen right away is because of some types of programs that they see on tv where taking you from when the symptoms first appear to the time it takes to actually get a diagnosis takes one hour. Doesn’t work that way. And even if it did, there is still always room for errors to occur. That’s why a thorough exam done by a good doctor is important as well as the picture painted by the patient, but even then it can still be a mystery. And to find the answer to the problem if there is an ongoing problem can often take time to find. And of course, a lot of patience, something that not everyone has I am sad to say.

      • JR DNR

        I would consider dizziness from dehydration to be a health problem. The thing is, I’ve been there. “There is nothing wrong with you”. Actually, I was slowly dying. Thanks doc.

        I don’t believe psyciatric diagnosis like Somatoform Disorder are real. They are diagnosed by ruling out known causes of illness. KNOWN CAUSES. We don’t come close to having a full grasp on human health issues.

        Someone I know has had a lifelong battle with lower GI problems. She also has RA. Turns out RA is associated with lower GI problems, though the connection isn’t well understood:

        http://www.arthritistoday.org/news/gastrointestinal-problems-rheumatoid-arthritis191.php

        Because the connection and cause isn’t understood, there is no treatment. But lack of treatment, lack of diagnosis, doesn’t mean “lack of pathology.”

  • JR DNR

    Yes, stress can cause underlying problems to be more noticeable, but “stress” doesn’t cause illness. That’s outdated thinking. We used to think stress caused ulcers. Oops, we’re wrong, it’s caused by bacteria. In fact there is no proof that stress CAUSES any disease, that’s an unscientific statement.

    Just because our medical knowledge is too poor to determine why someone is feeling ill, it’s irresponsible to dismiss a patient’s symptoms. We may not know what causes their symptoms. We may not be able to come up with an effective treatment plan. But it’s unethical to dismiss a patient’s issues because our medical knowledge is inadequate.

    • Kristy Sokoloski

      This statement that “stress does not cause illness” and “that is outdated thinking” is something I disagree with. The reason I disagree with it is because stress if left uncontrolled definitely can cause physical symptoms. Physical symptoms that can actually kill. When we are stressed especially to the max can do some very serious damage to vital organs such as the heart. I had a situation last year occur and the stress of that situation that occurred made me sicker than I had ever felt. And I tried my best to not let the stress get to me, but it was hard. Very hard. And I vowed to make sure I would not ever let that happen again.

      Now having said that you are correct about that stress does not cause ulcers. I remember the day that the report came out about what Australian researchers found was the cause for ulcers. However, prior to that those researchers were not completely believed either. But stress sure can potentially aggravate an ulcer.

      It’s not necessarily that the medical knowledge is too poor to determine why someone is ill. It’s that sometimes the actual cause of that symptom doesn’t always become apparent on the tests the first time around or even the second time. And yes, that is indeed frustrating. However, I do agree with you that it is unethical to dismiss a patient’s issues and concerns.

      • JR DNR

        Stress makes existing problems worse, but it doesn’t causes disease. “Stress” itself is an intellectual social construct. It isn’t “stress” but chemical reactions in human bodies that is actually at work. We don’t currently have medical treatments to prevent them.

        I was misdiagnosed for 30 years with my symptoms progressively dismissed as being: 1. unimportant 2. psychological 3. caused by weight gain. I have a diagnosis with a very effective treatment… if caught early. I may be permanently disabled because no one would take my symptoms seriously.

        It is true: Science wasn’t advanced enough to discover my disease when it first presented. I’ve only been diagnosed due to scientific advances. But this lack of scientific knowledge did not mean that I wasn’t “really sick”.

        What I needed when I was young was to be believed and to have assistance in managing my symptoms.

  • Karen Ronk

    I think it would be helpful to ban all those commercials for prescription meds. You cannot advertise cigarettes but it is okay to peddle a drug that can cause “serious allergic reactions” or “suicidal thoughts or tendencies”. Absurd. All of us, when we reach a certain age, can have vague feelings that seem to align with all of the “diseases” du jour and it is up to physicians to sort out whether symptoms are worthy of further examination. Of course, they can be wrong and in that case it is perfectly reasonable to seek a second opinion. If your symptoms are truly damaging your quality of life, then when do you tell a patient to stop looking for answers?

    • SarahJ89

      OMG, Yes!

    • Patient Kit

      On one hand, I like all the info available about all drugs. But I think all the relentless direct-to-consumer Pharma ads have done plenty of harm. Everytime I hear the words common to all the commercials — “Talk to your doctor about….” — I chuckle. Especially since I started participating and reading here at KMD, I realize how much our docs really really do not want us to talk to them about every new heavily pushed prescription drug.

      • Karen Ronk

        Ah, but then there are the docs “pushing” the drugs as easy answers to our problems as well. It is such a confusing mess and the rules always seem to be changing. Like you, I have gotten another perspective on medical issues here on KMD, the most comforting of which is realizing that many other patients have faced the same challenges and brick walls that I have. We all know that there must be a better way to do this health care thing, but no one seems to have found the answers that everyone can agree on.

  • JR DNR

    My treatment plan for dizzyness is:

    -Make sure to drink plenty of water before, during, and after exercise.
    -If having a dizzy spell while exercising, continue with slow down movement, bring heart rate down
    -After exercising, eat kelp (for the electrolytes, no sugar like sports drinks have)
    -Modify exercise but don’t give up on it

    My dizziness, of course, is related to anemia and low iron stores which is why my plan also includes taking supplements. However, I can’t imagine that those first four suggestions would be neglected even when a cause isn’t immediately obvious.

    If it gets better on those suggestions, then we’ve probably found the cause. If it continues to grow as a problem, further testing and follow-up may be warranted.

    I’ve found doctors rarely do this, and yet, it’s what patients expect. Doctors tend to just say “well if it continues to be a problem they’ll be back… then we know its serious.” But I’ve learned if a doctor dismisses your symptoms and blows you off to simply walk away and find a doctor that will listen. If the doctor doesn’t listen, you’ll never get a diagnosis.

    • Trish Browning

      Speaking of somatic disorders and a serious case of Dr. Google……Buddy, you are a walking cliché.

      • JR DNR

        They normally don’t approve troll comments like this.

  • http://clearhealthcosts.com/ Jeanne (clearhealthcosts)

    Thanks, Trudy, for a thoughtful piece on a really important topic. It sounds to me like this dizziness interaction went wrong on many different levels.

    But! For most docs and the people who go to see them, we can probably all agree that a thoughtful and engaged approach on both sides will benefit everybody. Sadly, the current system doesn’t reward that engaged approach enough.

    What to do? Well, for one thing: if the doc review sites aren’t working well, let’s find quality metrics that do work. This doesn’t work for the dizziness case, but … For example, in things like joint replacement, frequency of treatment isn’t a bad proxy measure for quality. Doc A did 4 knee replacements last year, while Doc B did 60. I prefer Doc B.

    This information is not readily available at the provider level. If it were, people looking for a knee replacement would have better metrics on which to make judgments, reducing relevance of doc review sites or leaving them to pull up their socks to make themselves relevant.

    • Karen Ronk

      That is an excellent point! I found out the hard way that you need to ASK your surgeon many more questions and DO NOT rely on most of those review sites. Although I will say that I believe Zoc Doc is more reliable because you really have to verify that you are a patient, unlike others that can easily be corrupted by fake reviews.

      • http://clearhealthcosts.com/ Jeanne (clearhealthcosts)

        You will enjoy this search for quality metrics on a colonoscopy, by my friend Martha Bebinger at HealthCareSavvy on WBUR in Boston!

        http://www.wbur.org/2013/01/10/colonoscopy-quality-cost

        • Karen Ronk

          Thanks for that. It is so odd that we can get performance metrics on the cars we drive or the computers we use but not on important health matters. The surgeon who repaired both my rotator cuffs actually does use an objective measurement tool for his shoulder replacement patients so that future patients can look at his results. Of course, he is a brilliant surgeon so he has nothing to hide!

      • SarahJ89

        I was shuffled out the door so fast there was no time for questions, not even a look at the X-rays. I was back in my truck, stunned and scheduled for surgery, in about five minutes. It wasn’t until I tried to explain it to my husband that I realized how absurd it was. I went back in and demanded to see the doctor. This time I did get a brief glance at the X-rays and an explanation of what he was going to do.

        But still no time to ask things like “Is this complicated surgery or bread-and-butter stuff?” “What results do you get?” “How many do you do a year?” or “How long has your OR team been working together?”

        I had a broken arm so I was too befuddled to advocate for myself. My husband is a wonderful person, but totally useless in these situations. We now have an agreement that he will call my Irish-Polish niece who works in a nationally known hospital from now on if I’m non compos mentis.

        Broken bones really, really hurt! Way more than I ever imagined. Sucks your brains out with a soda straw.

        • Patient Kit

          I know what you mean about broken bones because I had a pathologic (no trauma involved like a fall or car accident) fractured femur for two years. It took a long time to start healing but it eventually healed 100% and now it’s like it never happened. During that time, I realized that a lot of people don’t seem to realize that bones are living organs. They think of dead Halloween skeletons when they think of bones. I tell them that bones are more like really big teeth and then tell them to think of how much a broken tooth hurts and magnify that a lot and they will be in the ballpark of how much a broken bone can hurt.

          • SarahJ89

            I was totally astonished, both at the intense pain and the uselessness of pain medication. The level of pain relief offered by the latter was in direct proportion to the loss of available brains. I took one and a half of them, then gave up and just toughed it out with an unset break for the week I had to wait for surgery. I had an 8-page newsletter that had to get out the door and needed to be able to think and write. I typed it one handed.

            My neighbour has fibromyalgia. His hip started hurting–a lot and differently. He was told it was his fribro. For three long years. One of his many doctors finally took an X-ray and whoa! He had a fractured hip. He’s from Maine, very tough guy. I can’t imagine how he managed to live three years with fibro *and* fracture pain without running amok.

            I used to work in rehab, had a lot of people with chronic pain. One woman told me “I watched my personality dissolve in chronic pain.” After my one measly week I totally believe her.

          • querywoman

            Ask for pain med, and they automatically assume you want narcotics. A frail lovely woman in my church who has epilepsy and maybe MS stopped taking narcotics a long time ago.
            We had reports of her being in the hospital the past few days in pain. Her husband posted late Sunday that she is resting better with ibuprofen.

    • Lisa

      I had to have cataract surgery so I asked my sister, who is my OD, what I should look for in a surgeon. She said I should find someone who runs a cataract mill. I did and am very happy with the results.

      I also used a similar apporach when I looking for an orthopedic surgeon to do my hip replacements. My surgeon has a poor bedside manner but he does a lot of hip replacements. I am very with the results.

      • http://clearhealthcosts.com/ Jeanne (clearhealthcosts)

        Nice. Noting! Same for my orthopedic surgeon, by the way. Golden fingers do not necessarily accompany good bedside manner, and vice versa.

      • SarahJ89

        Yes. We have a cataract mill here. And it really IS like a factory. But if I needed cataract surgery…

      • querywoman

        Well, most of us do get better at the stuff we do all the time.

  • SarahJ89

    I’m not sure what you’re saying here. I can’t tell if you’d do an exam and ask clarifying questions or if you’re saying dizziness should be merely brushed aside as unimportant.

    Somehow the doctor and patient got locked into an unproductive power struggle over testing. But that certainly doesn’t mean there’s “nothing wrong” with a person has recurrent dizziness.

    It could, indeed, be dehydration. Or Meniere’s syndrome. Or TIA. Or any number of things. You wouldn’t need to do extensive testing to rule most of those things out, but it certainly would warrant some discussion and questioning, would it not?

    • rtpinfla

      A power struggle? Yikes. That scares me to think that a patient requesting an inappropriate test and a physician not ordering that test can be perceived as a power struggle. A discussion, perhaps- a power struggle? No way.
      As far as discussion, the article mentions that the doctor spent an hour with this patient, so one could presume that the physician discussed the differential diagnosis and why things like TIA and Meniere’s was not likely. I doubt they were arguing about whose bank account was bigger.
      And to clarify an important point. The physician never concluded that there was “nothing wrong” with the patient. The physician, after an hour with the patient concluded that there was “nothing that warranted the neurological studies the patient was demanding” (e.g. MRI). There is a big difference between the two.

      • SarahJ89

        Oops. I missed the “nearly an hour” point. Thank you for the correction. That does change things. Yes, that’s plenty of time to rule out a lot of stuff.

        It actually was the “nothing wrong” comment more than the original article to which I was referring. I totally agree that “You don’t need an MRI” is not the same as “nothing wrong.” By a long shot.

        The hour long discussion though. I’m blushing to have missed that.

        • rtpinfla

          I’ve missed little things like that more than once so no worries.
          re the “nothing wrong”. Based on your comments I did suspect you were replying to the comments more than the article- but it seems that a LOT of people are reading the article as if the physician said there was nothing wrong with this guy. That’s a critical distinction that needs to be clarified in this entire conversation.
          I see a lot of patients like this. I try hard to explain that although I can find no reason for the problem, I am not saying that the patient doesn’t have the problem. Unfortunately, despite my efforts many patients still only hear ” there is nothing wrong with you”.

          • SarahJ89

            We all also come to the table with our own histories, pieces of which can be quite tetchie.

            Perhaps if the “nearly an hour” was in blinking neon I might not have missed it. Gak. My apologies to the author.

            This is what happens when you read stuff when you really should be um, working.

          • JR DNR

            Hmm, when I read this I put in the context of two doctors talking about “the kings and queens” of health care, ie patients, and how this is a story one doctor related to another while complaining.

            I took the “I spent an HOUR with that patient…” to be… hyperbole. Exaggeration. Like normally happens when people are complaining about their jobs.

          • rbthe4th2

            Are you saying there is nothing wrong with you alone or adding I’m not saying that you don’t have a problem? I have been told constantly I want to reassure you nothing is wrong, not that you don’t have a problem that would be worrying to someone. Do you add this is all I’ve done and believe I’ve covered everything or I’d be willing to refer you out if you want to persue it. That’s what a lot of patients don’t get. A BMP is done, it isn’t way off so the patient is told nothing is wrong. There may be but that’s not what came across.

  • SarahJ89

    “Stress” is such a meaningless term it should be mothballed. It’s really a way of kissing off a patient’s concerns and most people take it as a brush off.

    If stress (whatever the heck that means) really IS a cause for dizziness then it would behoove the doctor (who may not be allowed the luxury of time these days) to have a serious discussion about how s/he arrived at that conclusion (it’s so often the first thing jumped to), what’s going on and what the patient can do about it. Sometimes just knowing someone who’s supposed to care actually does is enough to reduce stress.

    And stress bad enough to cause dizziness really does need to be addressed. Or we could simply wait until it manifests itself in a disease worthy of notice, I suppose.

  • Eric Strong

    I’m sincerely sorry that you had such a rough time in establishing your diagnosis of lupus. There are obviously some patients whose presentation of an illness doesn’t match the textbook description, and therefore, it is a greater challenge to correctly diagnose their condition, and requires a greater number of tests. But the greater number of tests one performs, the more likely one will either be a false positive (i.e. a positive test result in a patient without the disease), or will find a true abnormality that is completely unrelated to the presenting symptoms and which is of no consequence other than increasing patient anxiety (and leading to even more testing to understand that new, unexpected finding).

    As a hospitalist, I am occasionally in the position of offering a new set of eyes on a challenging diagnosis, when a patient experiencing symptoms for months or years without a diagnosis made in the outpt setting becomes ill enough to warrant hospital admission. In my experience in that position, the PCPs have usually ordered the correct tests in a logical sequence, plus a few probably unnecessary ones as the work-up drags on without patient improvement.

    However, in situations in which the PCP does the “million-dollar work-up” (i.e. orders every test remotely related to the patient’s symptoms), here is my estimate of the breakdown of the potential outcomes, in order of most common to least common:

    1. No additional useful information is obtained. No physical harm to patient. Just a lot of inconvenience.

    2. No additional useful information is obtained. Irrelevant new findings and/or diagnoses are uncovered (e.g. an “incendentaloma” ).

    3. One of the test results is positive and/or abnormal in a way that initially seems relevant to the problem, but even more testing reveals it to have been a false positive.

    4. No additional useful information is obtained. Patient is directly harmed by the work-up (e.g. kidney failure from contrast material, pericardial tamponade from heart biopsy, etc…).

    5. One of the test results is positive and/or abnormal, and it helps to secure the correct diagnosis.

    So, lots of testing can successfully make an enigmatic diagnosis, but it is rare. A much much better approach to situations in which the conventional work-up has failed to reveal a diagnosis in a severely symptomatic patient, instead of undergoing lower and lower yield tests, is to seek a second or third opinion. It may be that the original doctor is suffering from anchoring bias, or has never seen the disease before that the patient has. Or perhaps it’s a single question in the history that was not asked, or a single exam finding that was not looked for that could solve the case.

    At my institution, once a week an usually challenging case is presented to the entire department with a panel of experts working through the case piece by piece (similar to the case records of MGH that are found in the New England Journal of Med). More often than not, someone in the audience is able to correctly identify the diagnosis well before the complete description of the full battery of tests received by the patient. The secret to making difficult diagnoses is getting the patient to that physician as early as possible in the work-up.

  • Eric Strong

    While I appreciate the sentiment that some symptoms have no identifiable cause, and are “functional” problems (also implying that the health care provider believes the symptoms do not represent a potentially dangerous condition), I agree with JR DNR that something must be present to cause the symptoms. The symptoms may be from an unidentifiable illness, or they may be from a primary psychiatric issue. But something is causing them (unless the patient is malingering…)

    In addition, dizziness, in particular, is not a common functional complaint. Whether the patient is using “dizziness” to describe lightheadedness or vertigo, there is almost always identifiable pathology underlying it.

    • PCPMD

      “Pathology” implies an identifiable physical disorder. The term is generally not used to describe somatic etiologies.

  • NPPCP

    Agreed; Just enough knowledge to be……..ummm, you know the rest.

  • http://www.thepatientdoc.com The Patient Doc

    I have lupus as well and it can be a very tough disease to diagnose, and since no one can find anything wrong, know one believes you are sick. I think medical testing is important and useful, but should be ordered because a trained medical professional thinks it is necessary and will offer information that will give you a diagnosis or guide treatment. Too often physicians are pressured to order unnecessary tests because a patient demands, not realizing that the results of the test will not give a necessary diagnosis, or will not alter plan of treatment.

    • rbthe4th2

      How many doctors are going to tell a patient that they will not alter their treatment plan (which is do nothing) vs. go somewhere else? I’ve seen doctors get results and do nothing even though there is literature to support it.

  • Doctor Nick

    Lupus is a clinical diagnosis. What test do you think cinched this diagnosis?

  • PCPMD

    So far, what you have shared is that the majority of evidence pointed against Lupus. One test and some vague symptoms, which can be found in many other conditions, were taken as proof of a difficult to prove condition. You were likely treated with prednisone, or other anti-inflammatories, which will make any number of ailments feel better, including conventional arthritis.

    While I’m glad you’re happy with the label your symptoms were given, and presume you’re doing well after therapy, i’m not sure it argues the point you are trying to make. It simply means that if one tries hard enough, and reads enough tea-leaves, one will find the answers one wants. That doesn’t necessarily make it good, or safe, medicine.

  • PCPMD

    My experience has been that chronic “dizziness” , with a normal exam and a negative Dix-Halpike test, is generally a telling sign of a serious serotonin deficiency. Fortunately, there’s a pill for that …

    • rtpinfla

      As sort of an interesting side note. When I was a Navy doc we had a lot of Filipino patients. They use the word dizzy to describe anything that doesn’t feel right. The trick was to ask the patient “what else do you feel when you’re dizzy”. Then they’d say, I’m dizzy and my stomach hurts” or “I’m dizzy and I’m having crushing chest pain” or whatever the real problem was.
      Until you understood the cultural difference, it could be very frustrating to figure out what was going on with these patients.
      Agree 100% with the low serotonin. But try suggesting that to a patient and then go read your online review…

  • buzzkillerjsmith

    Nice photo, but how did you get my dad to sit still long enough to take it? Restraints maybe.

  • JR DNR

    Oh no not again. I’m so tired of this.

    Criticizing one point an article makes doesn’t mean I’m disregarding the entire article.

    No, dizziness alone is not a reason to perform an MRI. I never stated that or argued for it or anything even close.

    Do you think the patients goal was… … testing? Stop and really think about it. They had all those tests, saw two doctors, had an MRI, and they aren’t satisfied.

    As a physician you can put your head in the mud and scream “ungrateful patients”.

    Or you could stop and think “what needs did the patient have that weren’t being met?”

    Because obviously based on the outcome – the patients goal WASN’T an MRI.

  • JR DNR

    As for your other point:

    Stress does not cause disease. Stress is a social construct, a term used to describe the bodies response to change. Sometimes this response is beneficial Sometimes it is not.

    The most current research on PTSD shows that people who get PTSD are those whose bodies over react to stress. It’s not the stress that causes PTSD, but the bodies over reaction to stress. The problem lies in the body before the stress is ever experienced.

    • Alexandra Phipps

      Stress is the layman’s term for anxiety. The body is reacting to a real or perceived threat. It starts in the brain, then filters to the body.

      • JR DNR

        Stress and Anxiety aren’t the same thing at all.

        This is stress: http://www.stress.org/what-is-stress/

        Stress is not a useful term for scientists because it is such a highly subjective phenomenon that it defies definition. And if you can’t define stress, how can you possibly measure it? The term “stress”, as it is currently used was coined by Hans Selye in 1936, who defined it as “the non-specific response of the body to any demand for change”.

        Anxiety is: a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

  • JR DNR

    “Sometimes it is physical and sometimes its not.”

    Stop. The idea that illnesses are “fake” needs to stop completely. There is a difference between “fake” and “nothing can be done”. There is a difference between “fake” and “inability to diagnose.”

    Who cares if the doctor was correct? He failed the patient.

    I had a co-worker who recently hurt her neck. She went from appointment to appointment, showed up in the emergency room (yup, for an MRI), and finally was referred to a surgeon.

    He was the first person to sit down, talk with her, and make her feel like she was being taken seriously. In a move I found shocking, he didn’t suggest surgery. He sent her to physical therapy. She felt she was being cared for, listened to, helped, and had something proactive to do to contribute to her health. He also let her know he was there for her if she didn’t improve.

    She’s all better now. Sure, it was really time that healed her body. But it was the surgeon who showed her compassion and actually helped her.

    It was NEVER about needing an MRI. It was always about needing someone to listen and take her pain as seriously as she did.

  • JR DNR

    I think Somatic Disorder is just a label used to justify a doctor’s inability to find a correct diagnosis. Not always the doctor’s fault – we know so very little.

    • PCPMD

      You disbelieve that psychological factors can cause physical symptoms?

      • JR DNR

        Can problems with the nervous system cause people to register physical symptoms incorrectly, such as a soft touch being painful?

        Can a lack of social support or coping skills make symptoms more noticeable and less bearable?

        Can sleep deprivation cause problems with the nervous system?

        Of course nervous system disorders are very real. But Somatic Disorder is a misdiagnosis based on the inability to find an accurate diagnosis due to the limits of our scientific knowledge.

        • Eric Strong

          Like all psychiatric diagnoses, on some level somatoform disorders likely have a neurobiochemical explanation that is simply too advanced for our current understanding of neurology. But that doesn’t make it a “misdiagnosis”. It simply means that the source of the problem is in the brain, not the rest of body.

          • JR DNR

            Somatoform Disorder and Auto-Immune disorders have many overlapping symptoms. More than half of people eventually diagnosed with Auto-Immune disorders are told they are “overly concerned with their health” before reaching a diagnosis an average of 10 years after the onset of symptoms.

            It is true that if you have problems without a clear medical cause, learning coping skills can greatly increase your quality of life. Some people get these skills from counseling, but for some reason positive coping skill development doesn’t seem to have much push in the counseling/psychiatric world where it would do much good.

            The current reality is that those labeled with Psychiatric labels frequently die younger than others due to the drugs and the lack of attention to symptoms causes by diagnosable diseases when they arise.

            It has to change.

    • rbthe4th2

      A doctor that knows how to fix mistakes with grace and maturity and a handshake and apology, who is honest with a patient, who talks to them as an intelligent human being, that doctor knows a lot.

      Whether they are a newly minted PCP or the head of ABIM.

      Wait … after MOC … I need to retract that statement about the head of ABIM.

  • JR DNR

    You know two people with illnesses.
    Drugs are able to treat those illnesses.
    But their illnesses aren’t real?

    Mental illness is… an… illness. It’s a physical malfunction of the body. Just because we don’t understand them fully, doesn’t mean they aren’t “real” or “serious” or illnesses.

    Dementia is real. Alzheimer’s is real. Schizophrenia is real.

    Many mental illnesses cause detectable changes to the brain or nervous system, but we certainly aren’t to the point where we can distinguish pathology from normal yet by doing, say, an MRI. Perhaps we’ll never be able to use an MRI and instead have other tests in the future. But that is a lack of our current scientific knowledge, not a lack of illness.

    (BTW – many Anti-anxiety, Anti-Psychotic, and Antidepressant medicines are used to cure what you would consider “diseases” of the nervous system, because of their effect on nerve tissue in the body).

  • Suzi Q 38

    After my hysterectomy, I had numbness in my hands and feet…my doctor dismissed it as pre-diabetes. My legs felt weak…There was also numbness on my lower back.

    • rbthe4th2

      Agreed. Too many have the same story as you do. Being blown off is not fun but its not fun to have to live with the mistakes of a jerk.

      • Suzi Q 38

        Thank you!
        If we can not get the proper empathy from our doctors, at least we can empathize with each other.

  • Ladyimacbeth

    The physicians I’ve always liked are the ones who are blunt and a little on the cantankerous side. I like knowing they’re going to tell me what they really think (even when it’s not what I want to hear).

  • Andrew

    The one thing I cannot stand is lack of bedside manor. Every time I go to a family doctor, they don’t seem to even care about what’s going on with me. They ask me what my issue is and try to get me out of the room as quickly as possible so they can see another patient. Most of the time, they don’t even look at me. My mom’s a nurse and she sees this kind of behavior all the time. I ALWAYS get a doctor who has that “I’m a doctor, so I’m better than you” attitude. It’s so annoying!

    • querywoman

      And they come in and start asking when your last preventive screening was and don’t care about why you are there!

  • JR DNR

    Recipe 1: Patients demand tests. Doctor fights a war against the tests and wins, patient leaves.
    Recipe 2: Patients demand tests, doctors realize its not the test that the patient is after, and treat the patient without needing to order the test.

  • Sherry Reynolds

    Interesting that the story uses an N of 1 to prove the case? How many stents have been put in that weren’t needed? or Pap smears simply out of habit? What about back surgeries and hip replacements when studies show no difference in outcomes? What about the 600,000 hysterectomies a year – only about 1/3 are needed? Eric Topol recently mentioned that 1/3 of all RX’s don’t work in some patients.

    So sure a few healthy wealthy worried well might impact a doctors brand but that is hardly an argument against patient centered care or quality controls that include patient experience. The solution is already being used in many larger systems that survey patients pro-actively vs the online ones that are often full of paid reviews or upset patients

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