Why do some patients go to the doctor in the first place?

William was doing great.  His C. Diff  was finally gone after a month taper of vancomycin.  He was stronger.  The nursing home staff reveled in how much progress was being made over such little time.  It seemed every one was ecstatic, except for, of course his family.  Every step this octogenarian took forward was accompanied by a litany of concerns and complaints from his daughter.

If he was not gaining weight, she wanted to know why.  If he then put on a few pounds, she wanted his diet restricted.  Through each “emergency” I calmly talked her down.  I often spent thirty minutes a day defending each minute order that was placed. And through all the commotion, I was able to withstand the barrage because I knew that William was getting better and would go home soon where his daughter could torture him instead of me.

A few days before discharge, I received yet another panicked phone call.  William had cloudy urine and his daughter wanted me to put him on an antibiotic for a urinary tract infection.  I dutifully hurried to the bedside and asked a series of questions.  He had no burning, no pain, no frequency, no hesitancy and no fevers or back pain.  I called his daughter and explained that cloudy urine, and even bacteria in the urine, are not indications of infection, and given the history I believed an antibiotic would do more harm than good.  This answer while appeasing for a moment, quickly became unsatisfactory the next day.  So there were more phone calls, and more discussions reiterating how it was inappropriate to treat with antibiotics when there were no active signs of infection in this elderly high risk patient.

But William’s daughter was smarter than I.  She waited till the night before discharge and called the doctor covering for me.  He, faced with little information and an agitated family member, was easily convinced to call in a antibiotic prescription for discharge.  I never even found out about it.

Until, that is, when I ran into his primary care physician while rounding at the hospital.  William was back in the ICU.  He suffered severe dehydration and sepsis do to (you guessed it) C. Diff.  A complication of his recent and unnecessary antibiotic use.

These type of situations happen all the time.  And while I am a big proponent of empowered patients and families, lately it seems that many really want to be managing their own care without the benefit of our experience and years of training.  In other word, they just don’t want to listen to us.  This is fine.

But why come to the doctor in the first place?

Jordan Grumet is an internal medicine physician who blogs at In My Humble Opinion.

Comments are moderated before they are published. Please read the comment policy.

  • yoshie

    I think it’s a really hard call for patients. If patients don’t agree with a doc, then they have to do what they think is right. And if that means getting input from another doc then so be it. I remember the example from the book, “How Doctor’s Think.” One patient was misdiagnosed for 15 years with IBS. It was really Celiac. The gastro doc who diagnosed Celiac said he was faced with a giant medical record from the primary care doc and many specialists who believed it was IBS. Talk about pressure. The PCP actually informed him that he only made the referral so that she would calm down and the gastro’s job was just to confirm diagnosis, tell her to follow the same treatment plan, etc. The gastro ignored the PCP, pushed aside all her medical records, did his own exam, and diagnosed Celiac. He saved her life, because she was very underweight by that point.

    The point was that sometimes docs feel pressured to make a certain diagnosis and they don’t always analyze the situation correctly. That’s where patients need to step in.

    • NewMexicoRam

      I guess the answer is to only let perfect people enter medical school.

      • DoubtfulGuest

        Looks like yoshie’s comment is geared toward a bit more productive discussion: “I think it’s a really hard call for patients.”

        Who’s saying doctors have to be perfect? What do you think is the right course of action for the patient in her example to take? There are glaring differences between this kind of situation and the one in Dr. Grumet’s post.

        • NewMexicoRam

          I think patients need to do what they feel comfortable with. And they may be wrong in how they assess the situation, just like a doctor can be, just as the original story attempted to convey.

          • DoubtfulGuest

            So the patient was wrong, which is fun to point out, and we feel bad for Dr. Grumet. Patients should do whatever we feel comfortable with, although as sd1 says, that often means “consuming a great deal of time and energy from everyone involved”. No more specific guidance?

    • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

      It’s not hard to cite examples of faulty doctors who have harmed patients, and the resultant need for patients to stand up for themselves to get beneficial diagnosis and treatment. However, it’s far easier to cite examples (as Dr. Grumet just did) of doctors who gave good advice to patients who, doing what they thought was right, ignored that advice to their own detriment. We doctors are fallible and sometimes wrong. All the same, we’re right more often than those who lack the training and experience. Caveat emptor — but have some humility about your own expertise too.

      • DoubtfulGuest

        Is yoshie claiming expertise in anything?

        I read Dr. Groopman’s book long ago, and IIRC this “IBS” patient was stuck for years on the hamster wheel of “it’s all in your head”. She couldn’t get anyone to take a fresh look at her case until she found this gastroenterologist. How should she have handled things, assuming she wanted to be respectful and a good patient?

        I know medical culture places immense pressure on you all, and this is a sensitive topic. But how about looking beyond that, for patients who do have reasonable expectations?

        • southerndoc1

          The point is that Yoshie’s comment is about a very different situation from the original post.

          Of course get a second, third, fourth opinion. Keep looking until you find the right doc for you.

          Dr. Grumet is talking about those not-at-all rare patients (or families) who aggressively question and attack every single opinion that the doctor gives, consuming a great deal of time and energy from everyone involved.

          Not at all the same.

          • DoubtfulGuest

            Agreed — and — it sure would help to hear specifics on when and how it’s okay with you all for a patient to question you? I was sympathetic with Dr. Grumet when I read his post, it’s just the comments I find disheartening.

            “Keep looking until you find the right doc for you” is often repeated here. I appreciate what you’re saying, but it has a consumer-like ring to it. Some of us don’t consider ourselves consumers. Doctor-shopping is frowned upon, so it seems we can’t win no matter what we do. Is the corollary to Dr. NMR’s response that we should only let perfect people go to the doctor?

          • Rob Burnside

            Guest, you’re right-on here, as usual. Stick to your guns. My five year “game” of russian roulette with prostate cancer is a good example of the point you make.

            It’s a weird science to begin with, made much more stressful by a steadily-rising PSA (now >15), a previous positive biopsy, and an intractably stubborn urologist who routinely answers my request for a treatment plan with, “Mr. Burnside, smoking will kill you before prostate cancer does.” I respect this man’s knowledge and ability, but I’m not happy with “wait and see.”

            In the fire service, we dealt with our worst nightmares by pre-planning them–developing attack plans for the buildings and situations we feared most. Is it asking too much to expect the same approach from one’s physician? In the best of all possible worlds, no. In this one, unfortunately and all too often, yes.

  • Brunhilde

    I want to hear a follow-up about how the daughter felt when the patient developed recurrent c diff. Did she accept some responsibility? Did she understand the role she played in the recurrence?

    • DoubtfulGuest

      Oh, me too. But I think in the long run, hearing that information isn’t so gratifying as leaving it open and assuming she didn’t.

  • JR DNR

    You ask if a patient wants a specific treatment, why do they come to a doctor? Because patients can’t get that treatment without a doctor’s involvement? Would you prefer patients be able to get all the medications and tests they want?

    There are some things that should be over the counter. Birth Control (the pill) is one of them. Antibiotics shouldn’t be over the counter because of the high potential for over use. Blood sugar testing and blood pressure machines are in a different category than a CT scan.

    • Patient Kit

      Antibiotics are sold OTC in Mexico and in other countries. I picked some amoxicillin up in Mexico a few times “just in case” I thought I needed an antibiotic but couldn’t get to a doc. I also thought it could be useful to bring some home for the uninsured (which I eventually became myself) who had no access to doctors. In the end, I always went to my doc if I really thought I had a problem that might require an antibiotic and I tend to be resistant to the idea of taking unnecessary antibiotics anyway. I rarely take them. But I toyed with the idea at one point out of fear of having no access to doctors. I have a couple of BIG bottles of OTC amoxicillin at home that I should toss because it is old now.

  • JW

    That’s a really sad story, but I wonder what led up to this. Maybe bad experiences with a previous doc?

    Also, no urine test for microbes and white cells was mentioned? Wouldn’t that have been a noninvasive, simple, inexpensive way to get hard data with which to reassure the family?

    I get that docs think this kind of thing with patients being insistent on something “not good for them” (seems true about the antibiotics in this particular case–I would hazard a guess that the concern about not gaining weight may have been warranted, but the concern about actually gaining weight confuses me unless it was happening too rapidly) , “happens all the time”…

    But I guarantee you that it is very common for stuff to happen like the alternate example given in the comments: that the patient gets brushed off with a relatively meaningless or not-very-treatable diagnosis while: 1) a diagnosis with a mature standard of care gets missed, 2) comorbid diagnoses with mature standards of care are being missed, or 3) the problem with the relatively meaningless or not-very-treatable diagnosis is that it is ill-defined and not well studied, not that what individual patients have is actually not important, and important pathology is being missed, possibly because we lack ways to measure it with current technology (or we may have some ways but it’s just not made it to the standard of care yet), and possibly because, having put a meaningless label on it, it’s not thought to be important to look for pathology.

    If you use the IBS example given in the other comment, this of course can actually be from many different things. People with Sjogrens or scleroderma may have a digestive problem that may get diagnosed as IBS because there is nothing to visualize on scope or MRI, but it seems to be part of the autoimmune disease. Other subgroups have a mast cell disorder, which again won’t show overt tissue changes on a macroscopic scale. There are likely many more causes and it is probably not one thing (hence the problem finding one pathology). IBS can lead to malabsorption and malnutrition, and deserves to be taken more seriously.

    Similar cases for other brushed-off diagnostic labels. Did you know there are an estimated 1 million patients in the US with ME/CFS, which is also suspected to be autoimmune, and only 10-20% are diagnosed? The other 900,000 are being brushed off by doctors (I know: I was one of these undiagnosed ones for 9 years), although we are, on average, actually more disabled (probably due to lack of medical care, especially targeted medical care as nothing has been approved to treat ME/CFS particularly, and also due to lack of assistive devices) than people with MS, COPD, and ESRD (CDC, Anderson, others). Again, there is a problem with diagnostic criteria (I estimate at least half, probably more, of people with a diagnosis of CFS have a different disease with a more mature standard of care, going off data from various studies looking at people referred to CFS treatment centers in the UK, noteably the Newcastle center–I could find no such studies in the US, although there are some by Jason demonstrating that the definition the CDC has been using for their studies is deeply flawed, but this criteria is applied differently from the one doctors use, if they use any at all). Look at this analysis of research used to support the standard of care for this disease:
    http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
    There are many more such criticisms in the comments sections of the various papers advocating this kind of management for this disease.

    And that is just two examples. There is an epidemic of conditions that cannot be treated basically because doctors and researchers and the NIH cannot be bothered.

    This leads to disillusioned patients who feel they have to do their own research and push for some kind of remotely appropriate care.

    Which causes the kind of conflict you described above. Usually it is not so much weighted to the favor of the doctor such as use of antibiotics in someone who had C diff recently, except only in the cases of wanting antibiotics to treat for viral infections (which is more healthy people, not the sort of patients I describe, who are much more literate in medical matters). Public education is trying to get through on that one, though susceptibility testing and a better incidental viral treatment would help.

    However doctors and researchers can do their part by reaching out to patients who tend to fall through the cracks, and using extra grace and compassion and being inventive in finding ways to help, and eliminating the disrespect which exists in the medical profession towards: old patients, complicated patients, patients with psychiatric diseases, female patients, minority patients, patients with disabilities, and patients with “wastebasket” diagnoses (it’s not their fault the diagnostic criteria is inadequate and research is badly funded and, some of it is well, ignorant).

    • JustADoc

      He talked about that JW:

      “He had no burning, no pain, no frequency, no hesitancy and no fevers or back pain. I called his daughter and explained that cloudy urine, and even bacteria in the urine, are not indications of infection, and given the history I believed an antibiotic would do more harm than good.”

      Asymptomatic bacturia(bacteria in the urine in a patient who has no symptoms of a urinary tract infection) is best left untreated.

      • DoubtfulGuest

        I think JW was talking about a urine test to reassure the daughter that there were no “bad” bacteria taking over? Was that done? Many people just can’t imagine that non-pathogenic bacteria can be associated with the urinary tract.

        • JustADoc

          Other than to repeat what I and the OP already wrote, I have nothing else to add. Elderly patients, particularly if recently hospitalized and recently catheterized, will often have bacteria in the urine. It means nothing in and of itself.
          Asymptomatic bacturia does not require treatment and can result in significant harm. In this case, it did just that.

          • DoubtfulGuest

            Tough crowd today.

            I have personally experienced asymptomatic bacteriuria and have declined inappropriate antibiotic prescriptions. I get it.

            No one is suggesting what this patient’s daughter did was okay. We’re not even saying Dr. G. was wrong for not doing a urine test. But is this a discussion, or not? How much does a urine test cost? When is one indicated? Is there a potential harm to the patient we’re not considering?

            Perhaps Dr. Grumet’s question was just rhetorical. So there’s no interest in clearing up patient-doctor miscommunications or preventing any problems in the future?

            For posts like this, Dr. Kevin might as well close them to patients if there’s nothing useful we can contribute. It’s not a good use of doctors’ time to repeat yourselves here, while avoiding more analytical, well-intentioned questions from patients.

          • JR DNR

            When I read this, I had no idea why the doctor thought the c.diff occurrence had anything to do with antibiotics. I actually had to go research that to see that c. diff infections usually occur in patients who are taking antibiotics, as it’s an opportunistic infection. I’ve heard of it before, but all I’ve heard is that it’s a common infection gotten from hospitals or group homes. I’ve never heard antibiotics are a risk.

            Now I understand. The risk of antibiotics for this patient is that they just recovered from c.diff, going back on antibiotics could cause a re-occurrence.

            The article doesn’t explain there is a connection, it assumes the audience already knows that.

            That makes me wonder: Did the patient or caretaker know that? Why didn’t the second doctor know that?

            I don’t think we can assign blame to any one person in this scenario.

          • JustADoc

            This is how this happens(not necessarily in this specific case as I was not there but I have been involved in similar situations numerous times):

            The second doctor was woken up at 1:30 at night and advised by the night shift nurse who had never taken care of the patient previously that the daughter was complaining about cloudy urine and that her father was sick. Vitals aren’t available and they can’t tell you anything about symptoms. It takes 10 minutes for them to look for a urine test and then to tell you it wasn’t done. They have zero knowledge of the multiple conversations that the patient’s actual doctor has had with the daughter. The doctor that was woken up at 1:30(now 1:43) doesn’t know that the patient just had CDif because the night nurse taking care of him doesn’t know either.
            He eventually relents and orders an abx because it is now 1:48 and he knows no more about the patient than he did at 1:31 and it doesn’t appear any useful information is forthcoming but he really doesn’t want another phone call at 2:17 from an angry daughter who won’t be able to provide him any more useful info either and will be less likely to listen to him than to the regular doctor.

          • JR DNR

            I would say that’s a serious problem with the hospital procedures, documentation, etc. I think anger at the patient’s daughter is really misdirected here.

          • JustADoc

            I believe it was exasperation, not anger.

          • DoubtfulGuest

            So, yeah, this is kind of informative. When I joined this discussion I was mainly responding to Dr. NMR’s dig about “perfection”. Reading Dr. Grumet’s post, I thought “Oh, no, lady! Not more antibiotics, sheesh”. But the discussion has branched off in a few different directions from there. I get that you guys aren’t that interested in communication. It takes time. Is the take-home message here that patients should not ask questions? I think so, but no one quite wants to say it. Oh shoot, I did it again.

          • JustADoc

            Once again, notice the multiple conversations that Dr Grumet had with the daughter. I am unsure what your definition of communication is but I will, once again, highlight the relevant portion:

            “I called his daughter and explained that cloudy urine, and even bacteria in the urine, are not indications of infection, and given the history I believed an antibiotic would do more harm than good. This answer while appeasing for a moment, quickly became unsatisfactory the next day. So there were more phone calls, and more discussions reiterating how it was inappropriate to treat with antibiotics when there were no active signs of infection in this elderly high risk patient”

          • DoubtfulGuest

            Yes, yes…got it. I’m not arguing with you about any of that, okay?

            So, here is this post and the comments in a nutshell, how I see it:

            Dr. Grumet: Patients often really mess things up badly by questioning their doctors. It can harm them, and it makes me feel bad.

            1st commenter yoshie: Well, sometimes we are right and it’s a tough call.

            Other patient commenters: Yes, sometimes we need to question, and sometimes we should not. How can we improve our judgment about this? Docs?

            (*crickets chirping*)

            BUT! A detailed lecture on antibiotic resistance unfolds. A few docs roll their eyes and shake their fists. And here we are.

          • JustADoc

            I think the point was to express frustration at patients who have little interest in what the doctor has to say and are merely looking for someone to do what they already know they want. Communication attempts in those cases are extremely difficult as the 2 parties are at cross purposes. One wishes to figure out what is wrong and attempt to fix/ameliorate it. The other is sure they know what the problem is and despite multiple attempts to explain why that appears to be incorrect(note several phone calls/visits by Dr Grumet above) the desired action is still desired.
            It is best in these cases to split company.
            The problem is when it is not the patient, but the patient’s family as in this case because the patient comes to potential harm thru no doing of his own.
            As here, I have said the same thing at least 4 times. You claim no one has talked about communication and that doctors aren’t interested in communication. The original article clearly describes his attempts at communication and that he took quite some time to do so. I have highlighted the relevant section twice.

            What more would you have me do?

          • DoubtfulGuest

            JustADoc, this isn’t personal toward you. No need to answer anything further. My frustration is with the overall high participation of docs on this post but with no direct answer to patients’ question: How do we know when and how it’s alright to question you?

            Of course each case is different, but we were hoping for some insight. You’ve succeeded at expressing frustration, okay? You’re all doing great.

            I actually think Brunhilde has nailed it. The reason we’re not getting anywhere with this discussion, is that the doctor is left holding the bag if the patient screws up (“should have explained better”, etc.). But many of us don’t think that way and had no idea this goes through the doc’s head. I have assertively requested tests and treatments before, many of which turned out to be appropriate. As I did that, I thought through the consequences if I was wrong, and I just naturally assumed responsibility for any mistake I might make. I never dreamed of putting it on the doctor. So, you have patients with a very different mindset asking how to improve things. But we’re here on the wrong post asking the wrong questions.

          • JustADoc
          • DoubtfulGuest

            Brunhilde brought up the issue of personal responsibility. My statement
            followed from that, and other stuff I’ve read on Kevin. I thought
            it might help to acknowledge that as an underlying issue.

            “I have now read Brunhilde’s one comment in this thread 5 times trying to
            see where it discusses the doctor being left holding the bag if the
            patient screws up. I don’t see it.
            I have attempted to reply to your
            comments several times and I really do believe I am responding to what
            you are saying. But apparently you are not saying what you mean or I
            have very poor comprehension skills because you keep repeating that
            which I just answered and asserting I or Dr Grumet didn’t do that which
            was clearly just done.
            So I agree we should part company on this one, much as with the hypothetical patient discussed elsewhere in this thread”

            Isn’t that last bit a little much? Yes, I often have trouble with communication. Always trying to improve. I accept your dismissal letter.

          • JustADoc

            I realized it was a little snarky immediately after releasing it. Thus I deleted it a couple of minutes after posting.
            Sorry.

          • DoubtfulGuest

            Thanks. I got too snarky as well. I apologize.

          • DoubtfulGuest

            Righto. And that hook: “But William’s daughter was smarter than I.” Then the emotional arc of, hey, that patient was crafty, but she was WRONG. Righteous indignation is the thrust of this post. Not education.

          • JW

            Or maybe feeling bad for losing a patient. It doesn’t say what the outcome was from the C diff. I maybe should have picked somewhere else to discuss patient/doctor relationships. Maybe write my own article.

          • JR DNR

            As an aside:

            I’m a big proponent of cranberry juice… haven’t needed an antibiotic for a urinary tract infection since I discovered it. I take it at the first sign of any discomfort and I’m fine in 2 – 3 days.

          • querywoman

            Try parsley tea!

          • JustADoc

            Yes there is a potential harm: antibiotic resistance, side effects from unneeded antibiotics, CDif infection which can result in emergency abdominal surgery and death, allergic reactions, etc.
            Since the OP had numerous conversations with the daughter it is likely that most or all of this was mentioned at some point.
            The point of this article was not an exhaustive discussion of the rationale for treating or not treating asymptomatic bacturia. It was an exposition on something that practicing doctors see all the time. We are merely conduits to patient(or in this case family)directed care and not seen as knowledgeable advisers who in general have out patients best interests at heart.

          • DoubtfulGuest

            No — I meant harm to the patient from doing a urine test, to *possibly* reassure the patient’s daughter.

            I’m a microbiologist, if that saves you any time. If you noticed my other comments here, my questions are all about communication issues, not rationale for treating or not. Shall I rustle up a Greek chorus of repentant patients for the occasion? I think that’s what would really go over best here. Perhaps some coffee and pastries? :)

          • JustADoc

            No it would be unlikely to help as it would quite possibly show bacteria. The culture would take 2 days and regardless of what it grows would not change the opinion of the doctor assuming the patient remains asymptomatic.
            So now you would have documented bacteria which only strengthens the daughter’s resolve that her poor father is dying and this incompetent doctor is letting him die.
            This would be the same doctor that has spent several visits/phone calls with the patient and daughter explaining all of this.
            I am unsure what additional communication attempt you would like the doctor to attempt here.
            See my comment above your most recent comment, last paragraph and also see the entire original article.

          • DoubtfulGuest

            Okay, well you know I don’t do urine tests for a living, otherwise I’d know more about them. I’m not in health care at all. But I’m well aware of the problem with antibiotic resistance. I’ve been told with my own tests that “we found bacteria but not the disease-causing kind”. I know sometimes doctors use judicious test-ordering to reassure patients. So I thought JW asked a good question. That is not the same as saying Dr. G. was obligated to order the test.

            Re: “also see the entire original article”, are you having a bad day, Sir/Ma’am? We’re having two completely separate conversations, and I’m not sure how to fix that. Thanks for your time, though.

          • DoubtfulGuest

            Well, okay, I am coming across wrong if even goonerdoc disagrees with me.

            I think people were just looking for something to discuss here. No one is going to debate that Dr. Grumet is a good guy. I really don’t think anyone is criticizing his judgment. The first commenter took on the broader topic of patients questioning docs. That generated quite a bit of interest from other patients. It may not seem like it, but we had good intentions.

            Next, it seemed like docs wanted to focus on the OP. Again, we needed something to discuss or debate. So, patients wondered how the communication between Dr. Grumet and the patient’s daughter could have gone better. Again, no one is criticizing Dr. Grumet. We merely wondered if either party might have made some inaccurate assumptions about what the other knows. And now we’ve learned something about urinalysis and antibiotic resistance.

            I’m truly sorry for offending you. When doctors get angry, I get very anxious. Several people besides me wanted to learn how and when it’s okay to question a doctor. Perhaps this could be accomplished in some future post.

          • luv2read

            And the response clearly shows a lack of communication. What is a patient (any patient) to do that will be considered respectful and polite when they feel they are not being heard? I was going to include more information, but after reading some more of the responses I know that would be futile. It’s a very simple question that is being avoided like the plague.

      • JW

        I didn’t see that yesterday, but I was thinking that if another cause for cloudy/hazy urine, like crystals or skin cells, were found, this would provide an alternate and believable explanation.

        I guess as the microbiologist alluded to, one would have to culture it (probably more expensive, but under the circumstances possibly warranted) to identify bad vs. good/benign bacteria. I had not previously heard of benign bacteria in the urinary tract, but after a recent catheterization as JustADoc said, that makes sense.

    • DoubtfulGuest

      JW, you make some really great points here. I have a few thoughts, mostly out of frustration at the docs so I hope this doesn’t come out wrong. But I think for ME/CFS the “more disabled than these other diseases” works against patients, even if it’s true. I do think much of it is lack of medical care. In my experience, docs flip that around (in conversation and in some journal articles) like “Right, these other people who are ostensibly sicker still work, so for ME/CFS and fibromyalgia, it’s more of a motivation/poor character issue”.

      I had a rheumatologist lump together fibromyalgia and chronic fatigue syndrome. Each time I saw him, he would write one or the other in his report, just waving his hands like, whatever. Well, it turned out to be a mitochondrial myopathy. Another thing I think hinders progress for CFS patients is that doctors are so often sleep-deprived, and have little tolerance to hear about tired people. I’ve had them snap back “Well, I’M tired!” like they assumed I wouldn’t have any compassion for them. I just honestly didn’t know that many of them go without sleep on a regular basis. When I haven’t slept enough, there are definite physical signs. There was nothing that obvious with my doctors. I could arguably have been diagnosed a bit earlier if I’d made a better-informed approach. Going off topic, sorry. I’m just hoping that Dr. Grumet’s post will become more than a vent-session for docs and help clear up some communication issues.

      • JW

        I think you’re right that it’s probably not useful to say it’s worse than other chronic not-invariably-fatal diseases (and I was going to come edit this out, but it’s too late now), but at least 3 studies demonstrate this, so it appears to be true, but yes, it’s difficult to understand even if a lot of it can be explained by lack of treatment and assistive devices.

        Partly because we can look well for a half hour appointment (and we try hard to rest beforehand so we can actually communicate and get some use out of the appointment)–I guess docs are used to having very disabled people with a specific organ system, like lungs or kidneys, in wholesale failure, rather than *everything* being in partial failure–and partly because it’s communicated by health authorities that this is treated with CBT and exercise (so, no big deal, right?), which is actually wrong (the studies they base this on are total junk).

        I agree that doctors’ own sleep deprivation probably contributes to both general lack of understanding for fatigue patients in general and ME/CFS patients in particular, and also to many doctors’ dismal lack of bedside manner and lack of creativity.

      • Rob Burnside

        Very well said, guest. Communication is key. When it’s optimal, a win/win often results. When it breaks down, all manner of unwelcome events can–and usually do–occur.

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

    So I speak as a physician and a patient with lupus. This article really touches me because I have had several patients who despite very thorough explanation will demand a certain treatment or test that is not only not beneficial but is also very harmful. In general, when it comes to my lupus, I have to trust and respect my rheumatologist. I may have medical knowledge but I know at the end of the day her understanding and experience of my disease is far more than mine. I do believe patients should ask questions, and doctors should take the time to listen. If they are not satisfied they should get a second opinion, but get a proper evaluation and opinion, not just go to another doc to get whatever med/test they want.

  • DoubtfulGuest

    Good catch. That could explain her weirdness about his weight and all.

  • querywoman

    It was the daughter’s chance to be a control freak. Maybe her parents were big control freaks.
    Some people, like my own mama, worry too much about everything. Nevertheless, when my brother way dying in a nursing home, there was a woman, a teacher, visiting her own mother across the hall who was dramatizing everything.
    The teacher would go off about everything including that some people had recently died in the nursing? In a nursing home, that’s what people do! Very few actually go home!

  • buzzkillerjsmith

    When I get old(er) I plan to go to the doctor every stinkin’ week, whether or not I am ill. I will make up bizarre diseases but will refuse any diagnosis or treatment, just to be difficult.

    Soon I will be kicked out of the practice, but so what, I’ll just move on to the next one and lie and say I’ve never been seen before.

    I also intend to wear a button than says “Ask me about my bowel movements.”

    A guy’s got to have his fun somehow.

    • lurking for answers

      Can I please be your patient????

      • buzzkillerjsmith

        Maybe. But only if I can become yours when I retire.

  • JustADoc

    He asked how this can of stuff happens. I told him.

    The nursing home staff that actually knows anything about the patient is the welcomed minority. I have been involved with 4 different nursing homes in 2 different states and 3 different cities.

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