How can doctors and patients regain trust in each other?

The Mayo Clinic Proceedings came out with a study that shows that many of the treatments that doctors once swore by are useless or worse.

The New York Times did a piece on it and the commentary contained a great deal of doctor-bashing.  So of course I opened my big mouth and pointed this doctor hatred out.  The comment I got back was this:  “It’s not hatred, it’s fear.”

Wow.  If people are starting to fear physicians then we’ve got a real problem.  Trust has always been the basis of the doctor-patient relationship.  If you can’t trust us then we might as well go back to the days of charlatans and quacks.  I know, some people are going to say we’re all quacks anyway but those folks had shoddy upbringing.  If you can’t trust us then we’re done.  If you can’t trust us then our relationship becomes adversarial: you against me. If you can’t trust us, you won’t tell us things, you won’t do what we say, you will constantly be doubting our motives.  And vice versa.  Actually, now that I think of it, the doctor-patient relationship becomes basically teenager-parent.

The literature on doctor-patient trust suggests that a patient’s health or recovery depend in part on the doctor-patient relationship.  Judith Hall, a researcher at Northeastern University, wrote with colleague Debra Roter,

Once the patient and physician are brought together, they enter a relationship predicated on the expectations each olds for the conduct of the other.  The relationship thus formed has substantial implications for how the curing and caring process will be accomplished and the extent to which needs and expectations will be met, satisfaction achieved, and health restored. (Doctors Talking with Patients/Patients Talking with Doctors)

Trust has many components.  It is based partly on compatible communication styles.  The Journal of General Internal Medicine points to the patient’s assessment of the physician’s communication, level of interpersonal treatment, and knowledge of the patient.  In these times of short visits, short-tempered doctors and patients, and fragmented treatment, all those factors are in jeopardy.   Patient dissatisfaction implies poor trust.  Race and gender of both patient and doctor has an impact. Patients who genuinely like their doctors tend to trust them more.

In the 1950s it was thought that the basis of physician trust is the understanding that doctors treat everyone equally.  The media has made sure we all know this is not true, and this has to do with economics and geography as well as regional differences in standard of care.  That old-fashioned trust of the physician resulted in a paternalistic approach to medicine with the resulting backlash by the autonomy movement.  The basic function of the doctor, to diagnose and treat, has been called into question by the Mayo Clinic article as well as a number of other stories such as over-prescribing, doctors taking money from drug companies, the guy who performed illegal and unsanitary abortions, doctors turning down medicaid patients, etc.  Doctors trust patients less too.  Part of the reason doctors don’t follow the latest recommendations is fear of litigation, especially if they don’t do something.

All the data is mushy in the research on doctor-patient trust and a lot of it is old.  Anecdotal evidence, like my interchange in the NYT comment section, suggests doctors are losing ground on this issue.  The following things might help a little:

1. Doctors cannot take money from drug companies.  Ever.  Not even a pen.  Just don’t do it.

2. Practice good communication, or learn how if you don’t know.  This goes on both sides.  If you don’t understand, ask.  If you are the patient, bug the doctor until you are satisfied.  If you are the doctor, ask and answer for as long as it takes.

3. Take money out of the conversation.  Universal health care is the only way to do this successfully.

4. There is nothing wrong with finding a doctor who is the same gender or ethnicity as you.

5. Understand that nobody has all the answers.  Doctors don’t know everything, patients don’t always know what they want, and none of us like this fact.  We like to think medicine is an exact science but it is not.

6. Doctors must keep up with the latest real research.  We must go to our annual conferences.  Where I work, the only people who get to go to the annual conference are the people who are presenting, who are the researchers, who always go, and who do less clinical work.   No.  Everyone goes.  Close the ORs.  Close your office.  Can’t afford to close your office?  Use the databases like UpToDate, which has a hundred doctors employed solely for the purpose of gathering the latest clinical info.

7. Tort reform.  All the research and conferences in the world don’t do anything if people are afraid to follow what the research says.

8. Patients cannot expect miracles.  Those days are over.  Patients cannot expect that they can get every test and treatment known to man.  Those days are over too.

9. Let’s all recognize our humanity.

Shirie Leng is an anesthesiologist who blogs at medicine for real.

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  • Allie

    I would add – Seriously reconsider shift-work medicine. You can’t build trust when “your doctor” isn’t really yours. Hospitalists and “whoever’s on call” OBs are the worst examples, but it’s invading every specialty.

  • Guest.

    If you can clear up the media and doctor bashing to help strengthen confidence, then we will talk about the doctor-patient relationship.

    • Suzi Q 38

      Sadly, that is not going to happen.
      The media is both a positive and negative thing for anyone or any subject. Doctors have to take the good with the bad.

      If glowing reports are appreciated, getting a few negatives comes with the territory. Doctors are perceived differently because of the way we patients are treated. Also, some doctors don’t “call each other out” and keep lying for each other, so frustrated patients come to social medical for venting.

      That is all we have less. It beats an expensive lawsuit.

      • FFP

        You are completely wrong like tens of millions of Americans who protested against Bush and his Health Spending Accounts (which were the only good thing to happen to American healthcare in the last few decades).

        You might have paid $170,000 in premiums, but most of that money ended up as profit for the middlemen, i.e. the insurance company. Your doctor, who should be the one you are paying DIRECTLY, has to first submit a bill to the insurance company to see any money. That bill will be refused using various subterfuges and, in the end, s/he will see maybe 40% of what she should have been paid for the visit, which by itself is just a pittance many times. And then s/he has to pay for all the overhead (rent, salaries, billing company, malpractice insurance etc.)

        On average, a physician will see about 40% or less of what s/he should be paid (and only if he has a really good billing department), and will lose money on many patients (billing for many Medicaid and Medicare visits costs more in overhead than the money you make). Many of you would not risk to be sued for millions just to make $10 of profit or less, right? Yet many physicians do this every day when seeing uninsured or poorly insured patients (yes, Medicare is included right there).

        Stop badmouthing physicians; you have not walked in their shoes and you wouldn’t want to, if you were truly informed. It’s probably the only job where people expect you to be more perfect than in any other, but expect/want to pay the least possible.

        Oh, and if you are not happy with the care you receive for the peanuts many of your insurance companies are paying, maybe you should take it up with them. The first question should be: How much did you actually pay my doctor for my visits? You would be shocked; 80+% of your money pays just for all the bureaucrats between you and your doctor. So stop badmouthing doctors, many of who care about your well-being, not about your vote or your money. Of course nobody is perfect, neither are the patients; just look at all the truly arrogant attitude from some people in this thread.

        • LIS92

          Maybe you should stop contracting with insurance companies if you want patients to pay you directly.

          • FFP

            When 90% of the people who actually can and will pay for their care already have health insurance, that’s virtually impossible for most doctors, especially in certain specialties. Not everybody is a plastic surgeon.

          • LIS92

            Since you are not willing to open a cash only practice so I have a choice, please stop treating bad mouthing patients for using insurance.

          • FFP

            I did no such thing.

            I only pointed out that $170,000 in lifetime health insurance premiums unfortunately does not mean anything, except to the insurance company; that we have a huge overhead and waste between the doctor and the patient; and, thus, one should not expect doctors to be incentivized by payments from certain insurance plans.

            I repeat what I said elsewhere: only in medicine one would expect a professional to assume a risk of a multimillion dollar-loss for one hour of work worth 20 bucks from Medicaid (and there are other examples). This is my business side talking, not the doctor; the doctor is a darn sentimental.

  • NewMexicoRam

    There’s a lot of garbage mixed with common sense in those 9 statements, but maybe it’s a start.

  • http://onhealthtech.blogspot.com Margalit Gur-Arie

    It’s too late. What goes by the name of health care reform is incompatible with a professional trusting relationship between individuals.
    Going to the doctor is supposed to be like going to the Cheese Factory. Trust is not a term that pops in one’s mind regarding one’s waiter, bus boy or line cook.

    • karen3

      I disagree. I trust the waiter not to spit in my food just fine. And if Cheesecake Factory gives me botulism, they will be liable and so they keep their kitchens clean. Not necessarily so with doctors.

      • Suzi Q 38

        Yes, but the waiters, bus boys, etc., will apologize then they make an error.

        If you have a problem due to a doctor’s error, good luck.
        I am fairly sure you will not get an apology.
        i am still waiting for mine.
        I am not “holding my breath,” though.

        • FFP

          Because the waiters don’t expect to be sued just because they brought you Coke instead of Pepsi.

  • Jess

    3. Take money out of the conversation. Universal health care is the only way to do this successfully.

    ==============================

    So you think that becoming a government employee is going to make your patients trust you MORE?

    • mmer

      Universal health care does not necessarily mean that doctors are employees of the government; turn off Sean Hannity for a second and do some research on other health systems (this means reading journal articles).

      Single payer only refers to the financing of health care, it says nothing about who the doctors are employed by. Canada for example, contracts out the providing of care to private providers.

      • Jess

        .

        (1) I don’t watch Fox News – I don’t even have cable. Save your rant for someone else.

        (2) I lived in the UK for 12 years, showpiece of “universal healthcare”, where most doctors are indeed government employees. And it sucks.

        Your doctor, like anyone else, will serve whoever is paying him or her: “He Who Pays The Piper Calls The Tune”. That is the truth of the matter.

        • http://onhealthtech.blogspot.com Margalit Gur-Arie

          The UK is rather unique in its model of providing universal care. Look across the channel… there are plenty of models based largely on independent private doctors.

          • Jess

            I concede that you have a point. But that said, I still do not agree with #3, “Take money out of the conversation. Universal health care is the only way to do this successfully.”.

            You cannot “take money out of the equation” — doctors do not work for free, healthcare costs money, and SOMEONE is paying for it.

            Just because the government takes it from everyone’s paychecks and then distributes that as they see fit, so that everything’s at arm’s length (5 or 6 times removed!) does not mean that patients still won’t worry that doctors are making decisions based on financial consideration rather than the best interests of the patients.

        • mmer

          //(1) I don’t watch Fox News – I don’t even have cable. Save your rant for someone else.//

          You sure came off sounding like Sean Hannity’s co-host.

          //(2) I lived in the UK for 12 years, showpiece of “universal healthcare”,
          where most doctors are indeed government employees. And it sucks.//

          Your opinion is of the minority. Look at satisfaction surveys. There’s a reason people (especially the working folks, the people that do the real and tangible work in the economy) get pissy when the NHS is attacked (btw, satisfaction has gone down as a result of cuts to the NHS).

          //Your doctor, like anyone else, will serve whoever is paying him or her://

          Ever care to ask doctors in the US what they think of for-profit insurance companies? Try it. One-quarter to one-third of our current costs are driven by insurance company overhead, profits, and the administrative costs embedded in clinical settings. Ask physicians about the emotional toll about non-voluntary procedures that will put a patient into bankruptcy. Medical bills are the number 1 cause of personal bankruptcy in the USA – personal bankruptcy from medical bills is unheard of in other developed countries. Ask them if they trust the consultants hired by hospitals that are owned by private equity companies. Physicians know their patients are not widgets and they are not cogs to be “optimized.” See if they think the financialization of medicine is good for the patient.

          As reported in the Journal of General Internal Medicine in April 2009 42% of physicians support a “Single-Payer National Health Insurance Program” while 9% support “The Current Health Care System.” A study published in the Annals of Internal Medicine found that 59% of physicians “supported legislation to establish national health insurance” while 9% were neutral on the topic, and 32% opposed it.

          //he NHS, is slowly running out of Other Peoples’ Money//

          Really? The NHS recorded a total revenue surplus of approximately £1.6 billion for 2011/12.

  • mmer

    If we can move to the place where patients no longer believe that the health system is profiting off of their illness, this would would do incredible things for the doctor-patient relationship – number 3 is the most important. Suspicion regarding motives (is the doctor doing this for his financial well-being or my well-being?) whether or not it is logical, poisons things.

    Fortunately, I think universal health care is inevitable as the US comes to realize that in terms of “developed countries,” we are rather pathetic in terms of access to care and cost.

    • Jess

      “Suspicion regarding motives (is the doctor doing this for his financial
      well-being or my well-being?) whether or not it is logical, poisons
      things.”
      ==================================
      Suspicion regarding motives (is the doctor doing this for HIS MASTERS’ financial
      well-being or my well-being?) whether or not it is logical, poisons
      things.

      The UK government, thus the NHS, is slowly running out of Other Peoples’ Money, and as it does, they are severely rationing all kinds of health care.

      When a doctor there proposes any course of action, you do worry that he’s doing it to save the NHS money rather than for your own well-being.

      I don’t think you understand that money still plays a HUGE part in medicine, in countries with “universal healthcare”.

  • karen3

    “Tort reform” is a terrible acid on the doctor patient relationship because it says I, the physician, am unwilling to stand behind my work. If I am careless, you are the one who will pay and will pay dearly, With that sort of imbalance, patients have to second guess everything a doctor does, because the doctor has no skin in the game.

    • Suzi Q 38

      So true.
      That is the way it is in California.
      The doctors that totally screw up are given a free pass because they “dodged the statute of limitations or some other “lame reason.
      This is probably why I did not receive a referral quickly after reporting my nerve problems to my GYN oncologist after my hysterectomy. He stalled me for as long as he could, then asked his neurology buddy at the same hospital to do the same regarding any tests (I am just guessing). Here I was trusting both of them to care for me! I even asked for some additional tests, at the request of my PT. I would have gone to another teaching hospital, but my PT said that “I would get lost there.”
      It only got worse, and the end result was spinal stenosis in my c spine left to get worse for a year and a half unnecessarily. All I needed was an MRI of my c-spine rather than the lumbar that he ordered.

      It is easy to show or point out a doctors error in judgment or stupidity. It is difficult to prove negligence.

      If you were a fly on the wall and watched a film of me giving my doctors clues as to my troubling symptoms, you would understand why it is difficult for me to trust doctors any longer.

      Sometimes the social media or newspaper articles are our only retribution. Most of the time, no one apologizes at all. You talk about lawyers being scum? Some doctors are scum. I never used to think this before, but the “slop” doctors remind me of those “slop” lawyers that advertise on T.V. for business.
      If the good doctors helped get rid of the slop doctors we would trust more.

    • Shirie Leng, MD

      Wow Karen. It’s hard to know where to start in how wrong you are on that one.

  • Steven Reznick

    Trust is built one doctor patient visit at a time. Like every other profession and job some practitioners are better than others, some are more proficient in some areas and not others. Your doctor has to know when to ask for assistance and help and know his or her weaknesses and not be afraid to simply say ” I do not know and will have to ask for assistance and look it up.” In addition to the doctors strengths and weakness we all have individual personalities and our communication skills vary and sometimes depend on what type of day we may be having. Add to this unique and different patients who are concerned and sometimes frightened by their reason for seeing the doctor and you can see that sometimes the relationship and chemistry does not work. It works far better when there is long term continuity of care. Having a doctor and getting to know each other in the professional setting goes a long way to building a trusting relationship. One of the great reasons for an annual wellness exam aside from reviewing and benchmarking where you are, where you want to be and choices to get there, is to enrich the professional relationship between patient and doctor without the stress of an ongoing acute illness

    • Suzi Q 38

      I asked my doctor that given the results of my MRI and the orthopedic surgeons recommendation, should I get the knee repair surgery?

      He was honest and said that he did not know.
      He said it was all up to me.

      He said that he needs surgery on his knee too.
      That he chose not to play tennis instead.

      I may wait a few months and get another opinion before I do it.

      He “works” as a doctor for me and has been my doctor for over 12 years. When I ask him a question, he tells me the truth.

    • Shirie Leng, MD

      Thank you Dr. Reznick for your measured reply. It is indeed the relationship that is most important, and the thing that is most missing.

  • LIS92

    It’s hard to talk about trust when you compare me to a teenager.

    • Suzi Q 38

      “Do you know when your teenager is lying?”
      “When h/she is moving h/her lips.”

    • Shirie Leng, MD

      A fair point. Although the patient is definitely not the only one being the teenager!

  • Suzi Q 38

    Barbara,

    This actually happened with me.
    I saw the transformation happen within months.

    The gyn surgeon informed me that they made an error in diagnosis while he was performing my hysterectomy. Pathology had given him the “all clear” with regard to uterine cancer and he closed me up as planned. Two days later, with the senior pathologist reviewing my specimens, she found a very small borderline proliferating tumor in my left ovary.

    Without researching about the tumor, the doctor said that he maybe should have tested some lymph nodes. Could have, would have, should have…..”oh well,”
    I told him.

    When I got home, I started my research. I printed some articles from physician medical study sites. I was ready with information when I went back to see the doctor.

    I pulled out the articles from well-known journals. I pointed out that these tumors are very unpredictable, hence their name. On one hand they can start to be active, but on the other hand they can just stay in a “holding pattern” for decades doing nothing to me. Since he accidentally or incidentally removed it, it was maybe my good luck. According to the literature, no chemo or radiation is recommended.

    I told him that since he already finished with my hysterectomy, I didn’t want another surgery, unless he suspected my cancer was active. He did not find cancer at all in my uterus, only endometriosis.

    After that, I decided that not all doctors have time to do the research. Not all are “driven” in that way with every patient.

    You (the patient) had better have an idea of what your health problem(s) is/are, and do your research.

    Anyway, after that, it was all downhill. Our roles started to reverse. Eventually my complex problems and questions started to annoy the assistant professor.

    I had other good reasons for firing him, but lack of trust and the parental shift change with my being the “parent” was one of the reasons.

    It happens. He probably is a great doctor for someone else.

    • FFP

      I am sorry, but you are not trained to interpret medical articles, so you are at high risk of misinterpreting them, despite the fact they appeared in some prestigious journal. If you really want to understand your disease, your best chance is a medical textbook, where a lot of the information is pre-digested by experts in the field. But even that might need to be filtered through the brain of an experienced clinician, who has heard about many white crows in her lifetime.

      Please learn from Steve Jobs’ example, and absolutely unnecessary and avoidable death.

      In the discussion between you and a true expert, there are zero chances that you will be the “parent”. By trying to be the “parent”, you will only become the “teenager” who thinks she knows best.

      The patient-doctor relationship is a partnership, based on trust and mutual respect. But please, if you know everything better, please stop torturing doctors. We are humans, too; we, too, deserve happiness in life.

      • Suzi Q 38

        You are right about that, I am not trained to interpret medical articles.

        If the doctor didn’t seem so perplexed at a prior visit, and said what his plan of action was going to be, I wouldn’t have had to do it myself.
        If his opinion was contrary, he could have told me why.
        I have learned that as a patient, I have to do all I can to help myself.

        Most doctors are well-meaning, but at times do not feel what I feel. You tell them and they do not listen. Here I am talking about hand and feet neuropathies and they are just staring at a computer.

        When I talked to mine about my symptoms, it was just another day and a boring one at that. I was patient for the first year, but when things got worse, I realized that no one was going to help me unless I stuck up for myself.

        I did, and finally got the care that I needed and had been asking for.

        Before you tell me to quit bad mouthing doctors ( I don’t bad mouth all of them, just the “worthy” ones), figure out how frustrating at times it is to be a patient with real medical problems and a couple of doctors that didn’t listen or act in a timely manner. Mine waited until my nerve symptoms were pretty much permanent.

        I have every right to complain about mine, and to warn others if their doctors are equally complacent.

        • FFP

          I absolutely agree with most of what you just wrote. Except that if you are unhappy with certain doctors, you should criticize THEM, instead of generalizing. Because that’s how your posts come across.

          • Suzi Q 38

            Thank you.
            I have stated that most of my complaints are reserved for two of my 7 or 8 physicians and surgeons. That is not bad. I do criticize THEM.

            It is nice to have a place to “vent,” just as physicians do. They vent about insurance companies and certain patients. I know that they do not mean me personally, or all patients.

            Yes, I will have to watch it and try to consistently say that I mean TWO of my 8 physicians, not all.

          • FFP

            Thanks for reminding me that we are all venting our frustrations here.

  • Suzi Q 38

    Thanks for sharing the NYT article.

    Doctors still ask me if I want HRT.

    This is after I have been diagnosed with complex atypical hyperplasia and had a hysterectomy. We talked about all of the symptoms menopause brings. I had few of the symptoms.

    Back about 10 or so years ago, most menopausal women got HRT.
    You all know the embarrassing result.

    I suspect we will find the same with the statins, and the jury is still out on the daVini robot.

    The lawyers are having a field day with that robot.
    I was just asked to join a class action suit a month ago.
    I refused, as I didn’t feel I fit the criteria.

  • DW

    So true. Great article.
    When every patient is seen ad a lawsuit waiting to happen, trust is dead right there. Its so bad that even when a patient wants to take responsibility and make informed choices, the doctor doesn’t trust them to.

  • carolynthomas

    Dr. Leng, your nine suggestions seem simplistic but do indeed carry a germ of common sense. Trouble is, however, that in order to get to that list, we had to get past the regrettable “teenager” analogy you spat out at us.

    Is it possible that you or any other physicians were actually surprised or offended by the NYT readers’ response to the Mayo Clinic Proceedings report? The medical reversals cited are serious business, and patients are right to be afraid. Millions of people have been harmed and continue to be harmed, and as cardiologist Dr. John Mandrola warns: “Medical reversals cause harm
    because they erode trust in the patient-doctor relationship.” That’s why people are upset, Dr. Leng – not because we’re acting like teenagers.

    For a more thoughtful and informed reaction to this important Mayo report, read Dr. Mandrola’s post called “Changing the Culture of American Medicine: Start by Removing Hubris” – http://www.drjohnm.org/2013/07/changing-the-culture-of-american-medicine-start-by-removing-hubris/

  • rbthe4th2

    “The Mayo Clinic Proceedings came out with a study that shows that many of the treatments that doctors once swore by are useless or worse.” Which is why people blame docs: they’re not getting healed.

    Fear is because of blacklisting.

    Lack of trust is because I can now search, find things that these doctors are missing, or else even simple blood work test results they can’t interpret correctly in light of medications taken and other medical factors specific to a patient.

    “level of interpersonal treatment, and knowledge of the patient. In these times of short visits, short-tempered doctors and patients, and fragmented treatment” that is a good assessment right there.

    #2: “If you are the patient, bug the doctor until you are satisfied.” They label you difficult and then blacklist you.

    #3: “Universal health care is the only way to do this successfully.” That will make things worse. We’re going to that and its already a disaster. First, make ER’s only for EMERGENCY care. Meaning a nurse out front, triage, and if they have a cold, not broken bones, etc. then they go to urgent care and pay for it.

    #5: “Understand that nobody has all the answers” I actually have told my docs this and that we need to work together. Didn’t go any where.

    #6: “Doctors must keep up with the latest real research.” Won’t happen. To be honest, I’d rather peruse it and give my doc an article or two, rather than them keep up with it. I have a science background so yes, I do a really credible job with it. Saves time for the both of us and I am making an investment in my health. Their job, my health. I’m making the investment.

    #9: “Let’s all recognize our humanity.” If I can get the Medical Deities to do that, it would be great.

    • Suzi Q 38

      I can’t wait until someone goes really nuts and sues a hospital or group for “blacklisting” him or her. The icing on the cake would be a “win.”

      • rbthe4th2

        I think that in this day and age, you could probably be better off showing your insurance company or some of the groups that, or getting it in the paper. That would be quicker and better than a group wanting you to sign a keep silent agreement with cash for the story.

        • Suzi Q 38

          I would patiently wait to get the proof first.
          So far, so good.
          My new doctors have been really accommodating.
          No one has told me that h/she talked to my former teaching hospital. the main surgery I needed has already been completed, and teaching hospitals compete for patients as it is.
          I scoured my EMR to see if the word PITA existed anywhere. Thank goodness it did not.
          I warned the patient advocacy that no mention of my complaint could be entered in my records.
          I am still trying to “let the anger” about my misdiagnosis drain from me.
          i realize that certain doctors will not be happy about being called out, but that is the way it goes when you jerk around a patient that grew up on the wrong side of the city, LOL.
          I am hoping that just complaining to the Chief Medical Officer will be O.K. with me. It depends on how she handles it.

          It she tries to reverse it all and make it all my fault instead of the apology that I need and deserve, then, she needs to be told that that is not O.K.

          On the other hand, it all may be futile.
          Just badmouthing the two doctors on Yelp and then not sending any more patients to them should be enough.

          I was just going to give her a rare glimpse of how they could improve their business by doing a better job.

          If they do not want to do a good job, then they can deal with the public repercussions.

          • rbthe4th2

            Mine sent a copy of his dismissal letter to the PCP. Right after that, I was told I was crazy. The doc stopped doing any research into my issues.

        • Suzi Q 38

          My insurance company asked me what all my medical problems stemmed from.
          Did I get into an accident?

          I wonder what the hospital would do if I said what I thought, that my nerve condition appeared after my hysterectomy, da Vinci, style?

    • Shirie Leng, MD

      See? How can we have a dialogue when this is the kind of response I get?

      • Suzi Q 38

        Dr. Leng,
        rbthe4th2′s response is honest and real.
        I have not been blacklisted yet, and don’t want to be, either. I don’t fear this for now, but I know that with unscrupulous doctors anything is possible.

      • Mike

        How can we have a dialogue when doctors punish inquisitive or “demanding” patients by blacklisting them? And with universal electronic medical records, it’s only going to get worse. A doctor who doesn’t feel you’ve been sufficiently subservient and meek can put a black mark on your record, and it will be there forever, for every single treating medical carer to see and heed.

      • Kathleen

        Look: Especially with electronic records, a form of blacklisting is all too real and has a very concrete impact on patient care.

        In 2005 we were relatively new in our HMO and my PCP insisted that I cut my thyroid meds (due to lack of communication with my endocrinologist, it turned out) and then, as I began to fall apart, he dismissed my suggestion that it was my thyroid. He added Anxiety to my list of active diagnoses, referred me to counseling and, incidentally, ordered a TSH test that came back sky-high. Within 2 days of restored thyroid supplement I felt much better and decided to find another PCP, but that Anxiety diagnosis, a medical error btw, sat on my record without my knowledge. The so-called Problem List is the first thing any doctor glances at when she or he sees a new patient.

        After years of respectful and solid relationships with my docs in private practice, I was struck that most docs at the HMO seemed to assume I was a hypochondriac. They smiled tolerantly when I suggested a cardiac diagnosis in 2006 and again in 2009. They smiled tolerantly when I reported persistent headaches and stabbing pain behind my right eye, the onset of visual migraines. In early 2012 (after my sister-in-law was diagnosed with a brain tumor) one of them finally decided to humor me and ordered a brain MRI – which revealed my own rather large brain tumor. When I ordered copies of my records to consult at our medical research center, I found repeated references to me as “Anxious Female” and found Anxiety on my list of diagnoses.

        After successful neurosurgery (I do have some sense of proportion.) I asked my PCP to remove it, but he delayed, as that had become how he perceived me and he was not at all convinced that it was wrong. When I presented him with a stack of my records, walk him through that week in August 2005, it only confirmed it to him, so it was nearly 2 months before he found time to call my therapist, who told him that any anxiety I have is entirely understandable, given my situation and the extreme difficulty I have had getting appropriate medical care. So then he finally did remove Anxiety, but I had little hope of changing his perception and changed PCP yet again.

        Much better since Anxiety is gone, thank you. And then I tried again on the cardiac front. Guess what? My own cardiac diagnosis was AHCM, based on my unusual collection of symptoms and test results. The one that was dismissed in 2006 and 2009? It is correct and it was all along! My new cardiologist tells me that I’m a pretty classic case. One of the symptoms is Sudden Death. Fortunately, I’m one of the people whose heart is still basically doing its job. But for 6 years I was denied appropriate screening. With Anxiety on my record, even though it was a medical error, I couldn’t get anyone to listen to me.

        • southerndoc1

          Good example of why people shouldn’t be too enthusiastic about having their entire medical history maintained forever in one central record.

          • Kathleen

            Yes, it shows that central electronic records are not the panacea that many tout them to be. It’s still garbage-in, garbage-out. But mainly it shows that damage caused by docs who won’t listen and who won’t correct their own errors can be far-reaching and long-lasting.

            Honestly, it was bewildering until I saw the records. I was someone who rarely had headaches, and they were becoming constant and severe. I told practically every doc I saw about my headaches, and they smiled and suggested I try ibuprofen. I would have destroyed my guts. My tumor was the size of a golf ball by the time they removed it. Fortunately not malignant.

            And so few people ever look at their own records. As I mentioned above, that recent PCP considered the very fact that I had them just another piece of evidence that I was a whacko.

          • LIS92

            I suffer from depression and any symptom I have that is associated with depression is automatically dismissed my doctors. I spent several years with severe fatigue because of a low grade chronic infection. It goes way beyond medical records.

            I switched doctors, neglected to tell them about my depression and the infection was discovered. I no longer discuss anything related to depression with my doctors.

          • Kathleen

            You are so right, and that is a terrible sign, because depression is a very real part of your medical history. I’ve noted before: People with real anxiety disorders or depression may very well have infections, brain tumors or cardiac conditions, but the odds of ever getting it correctly diagnosed are slim.

            I recommend Jerome Groopman’s book “How Doctors Think” in which he picks apart the threads of different cases of medical errors, including his own. In the very first case, a young woman has been repeatedly dismissed as a lying anorexic/bulimic nut case who just won’t eat, until she saw a GI specialist who listened to her, assumed she was telling the truth, and thereby diagnosed her celiac disease.

            But in that chapter Groopman states straight out that docs are biased against patients with psychiatric diagnoses – ANY psychiatric diagnosis – and he goes on to name a long list of assumptions that follow. It’s a high burden for any patient to overcome.

            I am a long-term cancer survivor of radical cancer treatments, with a few genetic conditions besides, so have a long and complex list of conditions going on. Some docs would rather deal with simple things, but that’s not an option in my life. I was struggling to deal with the different aspects, mainly with the help of the odd specialist who seemed to basically like me. I keep thinking what might have happened to me if that ENT hadn’t decided to humor me and order the MRI. To his mind, it was to reassure me, all upset about my sister-in-law’s brain tumor. That very day he wrote: “Anxious Female” in my chart. He later told me that he was entirely shocked at the result. But I had been in such pain for so long that I immediately started counting the days until it would be gone.

          • Suzi Q 38

            Thank you for sharing. You are so right.

          • Suzi Q 38

            Thank you for sharing this.
            When I had my hysterectomy, I had nerve problems after the surgery. My legs were weaker.

            The gyn/surgeon not only treated me for a year as if he didn’t want to “hear it,”, but made me feel as if I were a hypochondriac.

            I wrote him a letter, in my last effort to get help before moving on to another teaching hospital and starting all over again.

            He stupidly ignored me.

            I got worse, and the damages became permanent. Luckily, I could still walk.

            When I told the hospitals neurosurgeon what happened with this doctor, he called out the doctor and called him personally to reprimand him.
            This proves to me that not all doctors are jerks.
            There are some really brave, good ones still out there, we just have to find them.

            Anyway, my surgeon called me within an hour of my seeing the neurosurgeon. He must have gotten an “earful” from the senior surgeon.

            I finally got his attention, even though it mattered little at that point.

            The damage had already been done.

          • Suzi Q 38

            I am so glad that not all doctors are like the ones we have encountered.

            I have only two out of the 7 or 8 specialists that were dismissive and ignorant.
            One of them, who was only in his early forties, had no manners and did not answer my email asking for assistance.
            His Chief Medical Officer brought him in to discuss manners, though. Manners that should be there generally, but in the presence of an escalating medical condition, can make him and/or the hospital liable.

            As far as blacklisting, it hasn’t happened yet.

            If it had, I am good at getting someone to tell me. If I could get the proof, I would report it.
            Any patient, concerned about h/her medical condition has a right to ask and express concern over h/her course of treatment or lack thereof.

            It certainly happens.

          • azmd

            I hate to say this, but even if you hadn’t had the diagnosis of anxiety on your record, there’s an excellent chance that your concerns would have been treated dismissively, since you are female. I have had similar problems with my doctors.

            Of course, having a psychiatric diagnosis probably did make things worse…

            Very unfortunate.

          • Kathleen

            You are right on both fronts. There is a growing body of literature on this. A study published in NEJM showed that women who come to the ER with cardiac conditions are 7 times more likely to be sent home inappropriately. Blacks were also more likely to be sent home inappropriately, but 2.5 times more. I’m all for more women going into medicine, but unfortunately, at this point treatment is not necessarily better with a doc who is a woman. But you probably already know that.

          • azmd

            I don’t know that it’s been studied at all, actually. In my experience, my female physicians have been, across the board, more respectful and attentive to my concerns than my male physicians have been.

            It’s a complete mystery to me. I am extremely careful, when I see any physician, to present in a very matter-of-fact fashion, and to not appear dramatic or “hysterical,” since that fairly reliably annoys almost all physicians. But with male physicians, that doesn’t seem to work.

          • Kathleen

            In my experience, it doesn’t break neatly into male vs. female docs. I’ve had excellent, respectful relationships with male physicians,
            and I’ve encountered female physicians who were as unwilling to listen as anyone could be. My present PCP is a bright, thorough young woman with perspective and heart, and I’m very happy to have switched to her. Most of the docs in this family med department of our HMO are young women – I’ve been happy with every single one I’ve seen and I think they bring a lot to medical practice. But for nearly 2 decades we were part of a particular private family practice. I saw everyone at one time or another, and liked them all, but my primary doc was a man, and we had complete confidence in each other. Ditto for my GYN of that period, and we had some difficult issues to figure out. Total mutual confidence and respect, and I had nothing like the same rapport with the woman partner I saw while he was on sabbatical. While pleasant and perfectly competent, she simply did not trust me or my judgment in the same way, and it really mattered when we had to make some difficult decisions. As soon as he came back, we talked it over thoroughly, I convinced him and we reversed course. Neither of us ever regretted it.

  • Ed

    “Actually, now that I think of it, the doctor-patient relationship becomes basically teenager-parent.”

    This attitude illustrates the problem. Your comment clearly implies you are the authoritarian figure in the patient physician relationship. You are nothing more than a professional who we pay for expertise and advice in the same way we consult attorneys. As the patient AND paying customer, we get to choose who, and to what degree, a provider (physician, PA, NP, nurse, assistant/tech, chaperone, or student/observer) participates in our healthcare, which is not a spectator sport! Paternalistic medicine is dead; stop treating us like some lower life form.

    • Kaya5255

      Well said, Ed!!!!
      The only thing you have to do now, is stop referring to yourself as a patient……you are the customer, or if you prefer consumer!!

      • Ed

        Thanks! I use “patient” because providers are incapable of imagining otherwise. That, and all the “patient rights” documents which apparently are nothing but empty words! Privacy, dignity, and respect are just three.

        • Kaya5255

          I like you!!!! You sound like my husband, and his name is Ed, too!! He’s an RN.
          Enpowered healthcare consumers are the only people who can change the attitude of doctors and their puppy dogs.
          Unless and until paying customers of healthcare organizations start saying “NO” to invasions of personal privacy and dignity by tossing students, PA’s, NP’s and all the other uninvited spectators out of exam rooms and hospital rooms, nothing will change. You must be firm and not be intimidated by threats of dismissal from the practice.
          Kay

          • Suzi Q 38

            I never understood why they needed 3 or 4 “team members to do what one PCP could do at the hospital. I just got out of the hospital as soon as possible to save money on unnecessary tests and treatments.

          • Kaya5255

            Dear Lady, don’t you realize that most (not all) physicians are ego-manics and they enjoy having “puppy dogs” follow them while they flit from client to client!!! They need the “team” to reinforce their importance.
            Personally, I never allow anyone other than my PCP to come anywhere near me. My experience has been that when the “team” is finished, the PCP usually repeats the same thing. Don’t waste my time!! ‘m not a practice dummy for students, medical, nursing or others. I dismiss them regularly.

          • FEDUP MD

            Man, I hope you are not planning on living to be older then, because without new doctors being trained, there will be no one to take care of you. As a physician myself, when I am a patient, I welcome learners in the room. They have assisted in several surgeries performed on me with my blessing. I want good care not just now when I am young, but my whole life through, and I am helping ensure there is good care then by ensuring the next generation is well trained.

          • Kaya5255

            You have made a choice to allow students to be involved in your care, I have made the choice not to allow them. I offer no explanation, justification or apology. No is sufficient.
            I am quite sure that on any given day in any hospital across the US there are plenty of healthcare consumers who are more than willing to allow students. I am not one of them.

          • FEDUP MD

            Just realize in a few decades that you will have gotten a free ride off of others, as you have made zero contribution towards the training of then current physicians with all of the benefits from them learning from others. If everyone (or even a significant percentage of people) followed your lead then the doctors now training who will be caring for you in years to come would be incompetent.

          • Kaya5255

            Truth be told, I don’t care. I will not allow students of any type to invade my privacy.
            As previously stated, I’m quite sure there a thousands, if not millions, who allow student. I am not one of them. Learn to live with dissapointment!!

          • Ed

            Your attitude that patients are somehow obligated to contribute to physician training is self-serving, hypocritical, and reeks of paternalism. If the medical community truly respected patients, they would provide real inducement (lower fees or true informed consent) instead of the unsubstantiated self-interest mantra. Patients find themselves in exam rooms or hospitals daily, sick, and
            uncomfortable, where you expect meek compliance, like inmates in the county
            jail. Do you actually believe providers uniformly solicit true informed consent
            for this practice? Pelvic or prostate exams on anesthetized patients, physician shadowing, or the fine print on
            hospital admission forms shoved in our faces upon admission are just a few examples. We are expected to bare our body and soul and in return, our trust and faith is repaid with these unethical and unprofessional practices, all for
            expediency and PROFIT. No, I will not permit my body to be used as a training
            aid and you have only yourselves to blame!

          • Guest

            Who should then? The dirt poor, prisoners, mentally ill, and the like?

            Thank god for the patients who let me learn from them, even when they were dying of cancer. I learned so much from connecting with patients.

            When you seek practitioners and they are horrible you can blame yourself for being one of those that physician students were not allowed to learn from. You reap what you sow.

          • Ed

            “Who should then? The dirt poor, prisoners, mentally ill, and the like?”

            Absolutely not! It’s telling though that you’re willing to take advantage of those least able to object to this 19th century paternalistic practice instead of supporting real financial incentives and true informed consent.

          • azmd

            Actually on months when I have an entourage of med students and residents, I do not particularly enjoy having a bunch of people following me around. I do enjoy teaching, however, and in medicine the only way that trainees get taught is to watch more senior physicians at work.

            By the way, my trainees regularly think of things and ask questions that result in better care for my patients, so you are short-changing yourself by refusing to allow trainees to be involved in your care.

          • Kristy Sokoloski

            I understand the reason for sometimes letting trainees be involved in the care. However, if the person that is seeing the doctor has something that they need to share but don’t want the trainees to know it then that needs to be respected. That respect is also very important to doctors and patients being able to trust each other, thus allowing them to work together.

          • azmd

            No one, including me, has ever said that patients do not have a right to meet with their attending privately if they have something confidential or sensitive to share. My comment was directed towards someone who said she “never allowed” trainees near her.

          • Kaya5255

            I NEVER ALLOW STUDENTS (TRAINEES) NEAR ME. NO EXPLANATION, JUSTIFICATION OR APOLOGY. “NO” IS SUFFICIENT. I AM QUITE SURE THAT ON ANY GIVEN DAY IN ANY HOSPITAL ACROSS THE US, THERE ARE PLENTY OF HEALTHCARE CONSUMERS WHO ARE MORE THAN WILLING TO ALLOW STUDENTS TO BE INVOLVED IN THEIR CARE. AND I AM EQUALLY SURE THERE ARE THOSE WHO DO NOT REALIZE THEY HAVE THE CHOICE TO REFUSE STUDENTS BECAUSE THEY HAVE BEEN PRESSURED BY PHYSICIANS TO SO DO. I AM NOT IMPLYING YOU ARE ONE OF THOSE, BUT THEY DO EXIST.

          • Suzi Q 38

            I actually allow the medical students…in honor of my daughter, who is a nurse.
            She said that they had to learn somehow.
            I decided to be more open to the student learning.

      • southerndoc1

        You’re telling Ed what he has to do? Sounds like a parent-teenager relationship to me.

    • Shirie Leng, MD

      I kind of meant the teenager comment as a joke, and the patient is not always the teenager, that’s for sure! I apologize for the misplaced humor. I am the last person to advocate paternalism.

      • Ed

        Thank You Dr Leng for clarifying your comments! Unfortunately, you seem to be the exception based upon my limited experience.

      • Kaya5255

        You didn’t mean the “teenager” comment as a joke. You absolutely intended to put the healthcare consumer in a subordinate role.
        Healthcare consumers are paying “customers” and deserve and demand to be treated with respect.

      • jlndewitt

        I can see why sometimes the doctor/ patient relationship might seem like parent/teenager. As a former HS teacher, I often think that patients not complying with doctor recommendations remind me of teachers advising kids to come to tutoring, do their work, etc. only to have teens flip out when they don’t do as directed, and end up with bad grades. A close personal relative is who I base this on. This adult person continually disregards doctor’s orders and then complains constantly about aches, pains, high BP, diabetes, etc. Really? Grow up.

        • Kristy Sokoloski

          Wow, I think we all have known someone like that before during our lifetimes.

      • Dewbink

        My hackles went up at the teenager comment as well, but when you stated your views about paternalistic medicine later in the article, I realized that you didn’t mean it to be offensive.

        Trust is earned by listening to patients (and I mean REALLY listening) and establishing a partnership. I am so disgusted with physicians and how they treat patients as if we’re some necessary evil, that I just don’t go anymore. I’d rather be sick.

    • FEDUP MD

      The reason why we do not use the word customer is because it does not encompass the special relationship physicians have with patients. You can go into Burger King and ask for anything they have and they will give it to you, because they have no obligation to you other than to take your money and give you a product. If you go into a physician and ask for an antibiotic for your cold, she will not give it to you, because her obligation is not to give you what you want, but to do no harm to you above all. It is interesting you bring up attorneys. You will note they call you a client, not a customer, which also reflects the special relationship they have with you. They, like physicians, have sworn to keep certain things confidential, and will always work in what they feel is your best interest, not always necessarily exactly what you demand. Therapists and psychologists too use the client word for the same reasons.

      • Ed

        Only a physician (or any self described medical professional) could possibly rationalize treating “patients AND paying customers” as some lower life form and then somehow characterizing that as a special relationship. Attorneys act within the limits established by the client, as do you with patients; it’s called informed consent.

        • FEDUP MD

          I am sorry that you feel physicians think that patients are a “lower life form.” I can tell you the majority of us do not. We realize we are blessed to be professonals who put others’ interests above our own. I, as well as many of my colleagues, lie awake at night sometimes worrying about patients, which I doubt you will find many people who treat you as solely a “customer” who will do so. We are very lucky in general to be trusted to give advice that is not self-serving, but what we honestly think is best for the patient. We consider it a great honor that other people trust us to that extent and I think most of us strive to be worthy of that trust. I am sorry if you feel disrespected by some in the past but the majority of us see our patients as we would our own parents, siblings, and children and act accordingly.

        • FEDUP MD

          Oh, and if you want to really eliminate all vestiges of paternalism, I would hope you would be against the new quality control indicators. The implication is that physicians are completely in control of their patients and that any failure for patients to meet benchmarks such as blood sugar, etc is entirely due to a failure on the physician’s part, and is penalized accordingly. One would expect in a true partnership that patients would listen to to the advice of their physicians and use their personal responsibility to decide whether to take it or not.

  • Shirie Leng, MD

    Thanks Barbara – I have duly chastised for that comment!

    • Mike

      But do you actually understand why so many people were offended by it?

      • Guest

        Yes, I think she does. Or would you like to borrow my large stick to beat this dead horse?

      • FFP

        I understand. It’s very easy to offend an insecure person. Part of maturity is to develop a thick skin.

        What’s all this talk about paternalism? Why do you expect a pilot not to care much about your idea regarding the best way to get from point A to point B, but you are deeply offended when your doctor is not excited by the pseudoscientific self-diagnosis you and Google came up with? Not to diminish the merit of pilots, but medicine is an even more complicated science.

  • Shirie Leng, MD

    See???

  • Suzi Q 38

    “…..Patients cannot expect that they can get every test and treatment known to man. Those days are over too.”

    I wouldn’t want every test.
    If I have nerve problems or symptoms that I have never felt before the surgery and you discount it, I start to become distrustful.
    I start to ask about this and that. The doctor kept putting me off and I just got worse and worse. “How about an MRI and a nerve test on my legs, Doc????I know I passed the lumbar, but aren’t there more tests? I am getting ready to go to Europe celebrating my 30th wedding anniversary and I don’t want to have a problem way over there.”
    When I got there, I overworked myself and I could barely walk.
    When I got back it was more serious than I feared.
    My year and a half of following and trusting doctors ceased.
    I finally got my MRI’s and nerve tests due to a physician that called out the others. He was afraid that I was going to need surgery STAT.
    Severe spinal stenosis.

    I am kind, but overtly cautious with any doctors that I do not know or no one knows from now on.
    I have my PCP that I have had for 12 years.
    I fired my old gyn/surgeon for not referring me in a timely manner and not listening to me. Ditto for his buddy from college that was the hospital’s new neurologist. Those two put me off for a year and a half and it only got worse.
    I have new doctors, at a new teaching hospital.
    I decided to check in with my friend, who is married to the CEO.
    I don’t want a doctor that I do not feel right with.

    My GYN recommended a new gyn/oncologist for my complex atypical hyperplasia and ovarian cancer concerns. I asked him one question:

    “Does she listen to her patients?”

    • FFP

      So your undiagnosed spinal stenosis worsened after your hysterectomy, and you fired your gynecologist for that. Wow! That’s like firing a mechanic because the car had a flat on the way back from an oil change. Now finding a better neurologist actually made sense…

      • Suzi Q 38

        I understand what you are saying. To tell my whole story would require writing a book.
        I felt tingling in my thighs shortly after my hysterectomy.
        I reported it to him and we decided to wait a month to see if it improved. It did not…it only got worse. I couldn’t even exercise. Within two months, I reported it to my gyn/oncologist again. He asked me to wait for my referral to a neurologist. I had to get a referral from my gyn/oncologist to get to see a neurologist. I waited another month, reminded his nurse to do so. No referral.
        I then had to call a nurse navigator to get me a referral.
        She put through the paperwork and then the gyn/oncologist had to write for the referral.

        In the end, I asked the gyn/oncologist in writing for help when my neurologist was not responsive to my complaints about my troubling and escalating neurology symptoms. He “blew” me off and ignored me. I asked his nurse if he had received my letter, basically asking for medical help. She wrote back that he had definitely received it. This was 3 weeks before my vacation. I wanted to know if it was safe for me to go, given my symptoms.

        It all came to a “head” during my vacation. I was out of the country on my once in a lifetime anniversary cruise.
        I could barely walk. I ended up in pain with ice on my legs every night. I did not wish to seek medical assistance in Italy and or Spain.

        Anyway, when I got back I vowed to let the good doctor know how I felt about his stupidity and ignorance.

        The Chief Medical officer actually agreed that at the very least, he should have called me back and met with me, to see how he could be of help to me.

        I would have told him that the neurologist was unresponsive, so he needed to place a phone call to him to discuss my care plan.

        Well, actually, there was no care plan. The two of them did not care.

        • FFP

          OK, makes sense.

          You probably got the care your wonderful insurance company bought you. They probably don’t pay (much) for your gynecologist’s referral (and it takes time to write a good referral), so he did not care much about something he probably thought was unrelated to his surgery, just coincidental. He should have told you that, but then you would have reported him, and the bureaucrats would have punished him for saying the truth out loud in the land of the PC.

          Anyway, I am sorry for your suffering, but please don’t hate doctors. Hate the system and those who are running it. Most of the doctors are just trying to survive it nowadays, and hate everything about it as much as patients do.

          • Suzi Q 38

            Thanks for your thoughts. At least you are somewhat compassionate and understanding.

            Please consider that patients do not know anything about the paperwork. We are not even assigned a hospitalist or PCP to help guide us through the myriad of specialists that we may have to see. They do not assign us a nurse navigator unless we demand one. We would not demand one unless there was a problem or we were at am impasse with a specialist.

            I thought I was complaining about my symptoms to the right person, the surgeon that did the surgery. Before the surgery, I had no such symptoms at all. At first I thought it definitely was the surgery. “Stuff happens” during daVinci hysterectomies and other surgeries. My surgeon was in denial of my complaints.

            I honestly had no symptoms before my surgery.
            This does not mean that the surgery itself caused it, but regardless of the reason, I still needed care and treatment.

            No, I don’t hate doctors, as I have 6 more that were very, very, good and were very brave.
            One actually called the gyn/surgeon himself and probably “chewed” him out. That was the neurosurgeon that would have had to perform the surgery to save my mobility. He knew that waiting and not responding to my request for help more than a month prior was ludicrous.

            The other one was a gastroenterologist that I had because my bowel movements were effected. He was brilliant. He figured the whole thing out before all of the others, including the neurologist. He was sweating and shaking with anger when he heard my “Reader’s Digest” story about my year. He told me to tell my neurologist to order tests X, Y, and Z (ones i had asked previously for but the neuro said I didn’t need them). My PT had also begged for additional tests, to no avail. I offered to call the insurance company to get the tests approved, if that was the problem. I have PPO insurance. My insurance company approves almost everything for me.

            He then told me to tell my neurologist that he (the gastroenterologist) “said so.”

            I have decided this year to opt for a higher deductible. It is still a PPO, but then I can maybe pay my doctors directly so that they get their money faster. I don’t know if this will help.

          • FFP

            I am truly sorry for what you had to go through.

            I understand your frustrations; I hate navigating my own HMO health insurance. Not to speak about a relative who almost went blind before we found a great ophthalmologist far away. (Nowadays, being affiliated with a famous academic medical center guarantees absolutely nothing.)

            But it’s mostly not the doctors. It’s the cancer of populist medicine, where everybody is being pushed to do more for less. And it’s led mostly by non-physician career bureaucrats and politicians.

          • Suzi Q 38

            Thank you for your explanation.

          • LIS92

            Most patients are just trying to survive.

            What’s the point of seeing a doctor if you can expect lousy care because you have insurance?

          • FFP

            We are trying to survive, too. All of us are between a rock (the insurance companies) and a hard place (the government). And access to the best doctors will get much worse before it gets better.

  • http://www.myheartsisters.org/ Carolyn Thomas

    Dr. Leng, I suspect that what many of us patients are reacting to here is the apparent lack of compassion that makes you or any physician consider a teenager analogy to be remotely “humorous” in the first place. For example, you write: “If you can’t trust us, you won’t tell us things, you won’t do what we
    say, you will constantly be doubting our motives.” And then quite plainly you compare these kinds of behaviour to that of the immature young.

    As a heart attack survivor dealing with ongoing cardiac issues, debilitating symptoms and a fistful of meds every day, day after day, I hope you will take a moment to look up “Minimally Disruptive Medicine”, an innovative practice concept launched by Dr. Victor Montori and his Mayo Clinic-based team. Perhaps it will help you consider that when patients don’t tell you things, won’t do what you say, or doubt your motives, it’s not because we’re acting like teenagers. It’s because we are likely struggling with what Dr. Montori calls the “burden of treatment”. And generally speaking, we may be just a wee bit pissed off when people – particularly those with the letters M.D. after their names – target this burden as the butt of questionable “humor”. Are patients absolutely justified in reacting to the Mayo Proceedings report with fear and mistrust? Yes, OF COURSE we are – and until you have walked a mile in our hospital booties, you just may not even begin to “get” the very response you are questioning.

    PS: The thoughtful step-by-step response from @rbthe4th2:disqus to your list (above) included on virtually every line precisely what I was thinking too when I first read the list.

  • Tom Eleson

    Dr. Leng

    This is your opening statement.

    “The Mayo Clinic Proceedings came out with a study that shows that many of the treatments that doctors once swore by are useless or worse.”

    This is the opening statement of the NYT article.

    “We usually assume that new medical procedures and drugs are adopted because they are better. But a new analysis has found that many new techniques and medicines are either no more effective than the old ones,or worse.”

    Are you just messin’ with us?

    • Shirie Leng, MD

      Nope. The May clinic was talking about procedures and medications that are “old” or otherwise generally regarded as standard of care. The NYT article opening statement is misleading. Good catch though. I’ll follow up on it.

      • Tom Eleson

        Thanks for responding. I think reporting should be accurate and accountable. When an error is made it should be corrected. I also believe the Medical Industry needs to be accurate and accountable. Errors will occur and people of integrity will not try to cover them up.

        I believe that ‘admit no wrong doing’ has been used too frequently in all aspects of government and economy and socially. I am not just picking on the medical industry here.
        I have experienced it personally in the medical industry though. To keep it short:
        Has ‘ We admit no wrong doing’ become ‘We can do no wrong’? I think at some level it has. I think it has affected trust and integrity.

        • Shirie Leng, MD

          Tom – the damage control people at most hospitals tell doctors when something goes wrong to be honest about what happened and to apologize but not to specifically admit wrongdoing. This is because the hospital pays their malpractice insurance people a lot of money and they need to protect their assets. Not saying it’s right, just saying it’s true.

  • Kara

    Dr. Leng, I expect a doctor to be attentive, knowledgeable and professional. I know how to communicate and think most doctors do. Narcissism is an epidemic within a certain generation and some members of that generation are becoming doctors.
    Three of my doctors have the aforementioned traits. I ended doctor-patient relationships with two doctors based on their inappropriate behavior. One was too casual, erratic, inconsistent and vulgar. When asked why he was prescribing a medication he interjected his personal experience with the medication. He refused to answer when I asked him how long I should take a controlled substance. What?! The other doctor seemed to have an arrogant tantrum when asked health-related questions. I feel both were disrespectful because I’m a minority, overweight and there are no consequences to their behavior. Both felt they could attempt to insult my intelligence because statistics show my demographic is uninformed. Although ethnicity shouldn’t be a factor for doctors or patients (unless there is a language barrier) doctors should somehow make their demographic preferences known. What’s interesting is the erratic one is also a minority (different ethnic group). He has included inaccurate information in my medical records and I’m waiting to receive my medical records to see the level of inaccuracy. If I pressure him, I’ll be labeled difficult. How can patients trust doctors that behave in this manner? This has been a very uncomfortable experience.

    • rbthe4th2

      Exactly! This has been my experience except I’m not the minority you are.

  • Kaya5255

    I was chastized yesterday, as if I were a child, by my PCP becaue I had the utter audacity to ask an LPN working at the practice not to call me “Hon”. I hold an academic doctorate and fully expect to be addressed as “Doctor”. When confronted by the PCP, I simply asked if the PCP expects to be addressed as “Doctor”. I was sharply told “Yes!!!” My retort was, “then what makes me different??” I received no response. Not that I actually expected one!!

    • FEDUP MD

      Is the LPN a southern woman? This is a common expression for women in this area to use for everyone, no matter who. I am regularly called Hon by my patients, as are pretty much all the other physicians, including the men. They also call me Doctor at other points in conversation.

    • azmd

      My patients regularly call me “hon” and “sweetheart,” and I mostly smile tolerantly.

      What really gets me annoyed is taking my kids to the doctors and having the nurses and techs call me “Mom.” If it wouldn’t embarrass my children, I would point out “I am NOT your mother and it shouldn’t be hard to figure out my name from the chart.” I would never expect any of them to refer to me as “Doctor,” however.

      • FEDUP MD

        As someone who works with kids, the reason we use “Mom,” is because in this day and age of women keeping their last names after marriage and unmarried couples having kids, mom often doesn’t have the same last name as the kids. There is no obvious spot in the chart, at least in our system, to put mom’s full name where it is easily accessible without a time consuming search (blame EMR for that).

        I get called mom too. Doesn’t bother me in he slightest. In fact, much prefer it them calling me “Doctor” when I am not there in that professional role.

        • azmd

          Just so you know, a lot of us find it annoying but are too polite to tell you so.

      • Kaya5255

        I’m sure there are “regional expressions” that are considered normal in casual conversations. I expect to be addressed professionally in a professional office. I expect to be addressed by my title and surname regardless of the circumstances being medical, legal, accounting, banking etc.

    • FFP

      I am a medical doctor, and still don’t expect to be called so in non-professional setting. Mr. FFP will do. Even with my nurses, I don’t care how I am called as long as I feel it’s respectful or kind.

      If I only had as many thousands as patients who have called me “man”.

      • FEDUP MD

        Ditto. I leave the MD title at my office door. To the rest of the world I am Mrs Lastname.

      • f. lusu

        in the past, i haven’t always had good luck in choosing a dr. in fact, i’ve had two GPs that have been arrested. different years,different charges. right now, i’ve had the same GP for about 5 years. on my first appointment he came in the exam room and introduced himself by his first name.i have great respect for him and i’ve never called him by his first name,but since i live in the south,he sometimes gets a polite “sir”. most people have no idea of what it takes to achieve the title of “doctor”. since they can’t experience med school, let them tag along for the 80+ hour work week of a resident, just for fun.

      • Suzi Q 38

        I always call my physicians “doctor.” I don’t care if they are so young that they look like my adult kid’s friends.

  • Suzi Q 38

    Good story and well-written.
    It is nice to hear that you found a really good doctor.
    You are so lucky.
    Thanks for sharing.

  • Ed

    “See? How can we have a dialogue when this is the kind of response I get?”

    Dr Leng, what exactly did you expect? We lag other industrialized nations in infant mortality and life expectancy. Short of the ER, we don’t even guarantee citizens access to healthcare. All while spending more as a percentage of GDP and per capita than any other nation. For what, to be treated like we’re somehow lacking in humanity; that you’re actually doing us a favor when graced with your presence. I spent 23 years in the USAF and my experience with military healthcare was uniformly better, by far, than my limited experience with civilian healthcare since retirement. The reasons are many and vary by patient but the bottom-line is your profession is failing to deliver on its promises!

  • elizabeth52

    A great start would be getting rid of medical coercion, every single day American and Canadian women (and others) face medical coercion. Cancer screening is supposed to be elective and requires our informed consent, that’s a legal and ethical requirement, yet it’s not respected for women. Women are denied the Pill, perhaps, all non-emergency medical care and may even be sacked as a patient if they decline “elective” cancer screening.

    It means many women have no say in cancer screening tests and exams, so when Dr Gilbert Welch and others say we should carefully review the risks and actual benefits of screening before we “agree” to it, it makes you wonder whether they understand what many women face in a medical setting. (I have enormous respect for Dr Welch, by the way)

    So, women are often forced into screening tests/exams and pure excess simply to get health care or the Pill…some exams are of poor clinical value and carry serious risk, even unnecessary surgery (the routine bi-manual pelvic exam) and routine breast exams. (no proven benefit, but they lead to excess biopsies)

    Population pap testing is outdated and over-screening provides no additional benefit, but greatly increases the risk of over-treatment. (damage to the cervix is linked to premature babies, c-sections, miscarriages etc) We’ve known for a long time that over-screening provides no additional benefit, the Finns have offered 6-7 pap tests, 5 yearly from 30 to 60, since the 1960s and have the lowest rates of cervix cancer in the world and refer FAR fewer women for biopsies/treatments…so this is not new information.

    The pap testing of women who’ve never been sexually active is way beyond unethical; doctors have no right to expose women to risk “assuming” we might be sexually active. These attitudes and practices need to be addressed and changed. No one has the right to accept risk on our behalf or make screening decisions for us.

    HPV testing is used inappropriately as well, ADDING it to population pap testing generates the most over-investigation.

    When used properly it takes most women out of pap testing and harms way. Under the new Dutch program, which puts women and the evidence first, women will be offered 5 hrHPV primary tests or they can self-test at ages 30,35,40,50 and 60 and only the roughly 5% who are HPV+ will be offered a 5 yearly pap test. Women who test HPV- who are confidently monogamous or no longer sexually active might choose to stop all further testing. This will save more lives and take most women out of pap testing and harms way. Over-treatment rates will plummet. (and hopefully, that means fewer premature babies, c-sections, miscarriages etc.)

    Of course, excess generates huge medical profits and when medical coercion is acceptable, women are the losers. I call it medical abuse.
    No wonder many women now avoid doctors altogether, others get their meds online or while overseas.

    I’m Australian and was fortunate enough to find a great doctor, she has accepted my informed decisions to decline screening. (The routine pelvic and breast exam are not recommended here anyway, but I would have refused them)
    The forums are full of women harmed by forced screening/over-screening/inappropriate screening, over-treatment, denied the Pill because they declined screening or the excess, birth trauma etc….and you wonder why some women no longer trust the medical profession.

    This is certainly a large part of the answer….

    • Ed

      Agree and it’s the same with prostate cancer screening. For years the science has been questionable at best, the USPSTF recommends against, and the last major physician specialty to climb onboard are Urologists! And you wonder why we don’t trust you.

  • Joe

    Not that it’ll matter, but, seems like a good place to “vent”. I’ve avoided doctors and hospitals almost completely since a hospital stay as a teen. I’ve developed a severe phobia of being “put under” and have incredible anxiety for weeks leading up to someone I care about having to go in for a procedure.
    I’ve learned not to trust doctors or nurses at their word, and I’ve learned that they won’t accommodate the patient, no matter how polite the request.
    Recently I took my girlfriend for a procedure and she repeatedly asked the sedation crew to give her “the minimum amount possible” and didn’t want to be out for ages and didn’t want the drugged feeling. She didn’t want a longer, drugged out recovery. She also asked them to get me as soon as humanly possible, even if she was still asleep.
    They said they’d give her the lowest dose possible and come get me within 15 minutes of the end of the procedure at most.
    When they finished with her (doctor reported it was over), 45 minutes later, after having the front desk call back about her, still nothing.

    The nurses were standing back there bitching about us, and she fought her eyes awake and told them to “come get me now” which they finally did.
    By that time, I was having a severe anxiety attack in the waiting room.
    It would have been NOTHING to listen to her requests instead of knocking her out for 90 minutes for a 15 minute procedure that she asked for the least drugs possible. It would have been NOTHING for them to let me sit by her while she woke up, instead of waking up hearing them complaining about a worried partner.
    It’s hard for me to even type this without feeling dirty about how they lied and mishandled us.
    Every experience with the medical community just teaches me that they over sedate, solve all problems with drugs, do not try to listen or understand fears of patients, and don’t make the SLIGHTEST adjustment from patient to patient to take into account different desires and personalities.
    To me, the humiliation and pain of being treated like this and the fear and anxiety that goes with it is too much to try to overcome given that I know they won’t even make an effort, so, I just stay away.
    I’m sure there are many, many people who stay away from doctors just to avoid hearing that they need some invasive test that didn’t used to but now “REQUIRES” sedation. WE ARE ALL NOT THE SAME. HOW HARD IS IT TO UNDERSTAND THAT!

  • meyati

    I also resented the parent-teenager comment too. Actually, some doctors treat a patient like a 4 year old-thinking that you’ll forget what you wanted-forget your complaint.

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