When a physician resorts to jargon, educating patients can fail

The urologist broke the news: “Out of 12 cores, three were positive for cancer, so you have a small amount of cancer.”

He would soon explain the treatment choices — surgery, radiation, or active surveillance (watching the cancer closely with blood tests and biopsies). He described each option in elaborate detail, because he knew that the “right choice” would depend on what his 70-year-old patient thought about the pros and cons of treatment versus surveillance.

But before explaining the choices, the urologist wanted to make sure that the man in front of him understood the limited extent of his cancer:

“We grade prostate cancer on how it looks under the microscope. We give it a score between 6 and 10.”

“Is that the Gleason?” the patient asked.

“Yep, so 6 is what we consider the lowest grade, least aggressive-looking, but it’s just abnormal enough for us to call it cancer. If it were any less than that — if there were less atypical-looking cells — we couldn’t call it cancer. So it’s just enough to get a grade of cancer, and then that goes all the way up to a score of 10, which is very abnormal looking and is more aggressive.”

“But 6 is the beginning number?”

“Yes, 6 is the least aggressive, 10 is the most aggressive,” the doctor clarified.

“I’m used to like, 1,” the patient said, laughing.

“Yeah well, the way we typically split it up is into thirds; low risk, intermediate risk, and high risk.”

“Right,” said the patient.

“Low risk is Gleason 6, intermediate is usually 7′s — 3+4 or 4+3, depending on how it looks under the microscope. And then 8, 9, and 10 are all high risk. Yours is an intermediate risk. So it’s in the middle. It is 3+3 and 3+4, so just enough of the atypical cells of the grade 4 to make it 3+4, which means you’re intermediate risk.”

The conversation is remarkable not just for its inscrutability but for the very fact that it took place. In the 1960s, surveys of American physicians revealed that almost none of them informed patients of cancer diagnoses if they thought such information would cause emotional distress. By the early 1980s, medical practice had undergone a paradigm shift, with more than 90 percent of physicians stating they would never withhold such information from their patients.

Nearly 30 years ago, medical practice experienced a patient empowerment revolution, with prominent legal cases establishing that a patient has the right to information about a medical condition as well as final say about medical care. The goal of the revolution was to make sure that health-care decisions would be based not only on medical facts but also on a patient’s treatment preferences. Unfortunately, unless we change the way physicians are trained and paid, this goal will languish.

As evidenced by the Gleason score discussion above, when a physician resorts to jargon, the effort to educate patients can fail. Imagine yourself sitting half naked on an exam table with the word cancer rattling around your brain. Do you think you’d be able to comprehend such a conversation? Jargon is ubiquitous in physician-patient encounters; doctors frequently use undefined technical terms and patients rarely have the confidence or assertiveness to ask for clarification. All too often, the result is precious time wasted on ineffective communication despite the many important decisions doctors and patients need to make together. Medical terminology is second nature to physicians, but to patients it may sound like a foreign language.

To make matters worse, physicians often fail to account for a patient’s negative emotional state during medical consultations. In one study of senior oncologists, researchers discovered that when patients expressed negative emotions (“I’m scared” or “I can’t sleep because of pain”), the oncologists acknowledged and responded to the emotions only one in five times. More often, physicians either continued talking, as if the patients had never uttered the cries for help, or changed the topic to something less difficult, often shifting to lecture mode, doing their best to make sure their patients were adequately informed about their illness.

In short, doctors don’t know how to partner with patients to make decisions. In the old days (the more than two millennia between the time of Hippocrates and the patient empowerment revolution of the 1970s), physicians were the decision makers—deciding what patients should and shouldn’t know and determining which treatments patients should or shouldn’t receive. Indeed, the Hippocratic Oath compelled physicians to remain silent if such silence would reduce patient suffering: “Give necessary orders with cheerfulness and serenity, drawing his attention away from what is being done to him; sometimes reprove sharply and emphatically, and sometimes comfort with solicitude and attention, revealing nothing of the patient’s future or present condition.”

With the new paradigm, physicians have been knocked off the “Doctor Knows All” pedestal, without being told where to stand. Too often, physicians see their role as that of an information provider. Sometimes patients ask their doctors for advice, and doctors refuse to advise. Here’s a common physician response to such a request for treatment recommendations: “It’s not for me to decide. It’s your decision.” (Perhaps the patient had asked for advice because he was overwhelmed by the detailed Gleason score soliloquy he had just received.)

Other times, physicians willingly provide treatment recommendations, but only rarely after learning enough about the patient’s preferences. There are educational programs that are helping physicians work with their patients. One such program at Duke and two other institutions showed that, when taken to task, physicians can learn to listen to and improve their interactions with patients.

The medical profession is a public resource, paid for handsomely by both government and private markets to serve patients’ needs. It’s time to design a health-care system that holds health-care professionals accountable for meeting those needs.

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.

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  • Kay Dee

    Unfortunately, communication issues aren’t limited to diagnoses and treatment plans. I recently requested lab results from one doc so I could share them with another, only to have her tell me “Don’t worry, your labs are fine.” I have found far too often that physicans don’t answer the question that I asked, but rather what they think I asked. I’ve found this issue seems to have a direct correlation to the amount of time the physican has been in practice, with newer doctors actually answering the question I actually asked most of the time.

    • rbthe4th2

      Agreed. I was told the same thing when I had 5-6 values that were slightly low. Not a problem in a regular person, but for me with my medical history, they are.
      Either that or gives me reason to think the doc didn’t read them.

  • Herb Stephens

    That conversation was incredible – like a “Who’s on First” routine where the stakes could be mortal, depending on your Gleason.

    I was struck by your comment that “In short, doctors don’t know how to partner with patients to make decisions.” I think there is a lot of room for technology to play a role here, improving patient-doctor communications, patient understanding, compliance and outcomes. Healthcare is just way, way behind the curve adopting technologies like CRMs, web portals and even websites and email to better manage patient relationships (and therefore, better serve patients).

    Proof point: the first comment here – “your labs are fine” – wouldn’t have happened if her doctor’s office had the practice of uploading medical records to a portal for the patient to be able to access/share as needed. A patient can go get their own EHR, for example the Microsoft Health Vault but most won’t, assuming (wrongly) that any doctor will be able to easily and rapidly provide any medical records at any time needed at any point in the future.

    • Kay Dee

      That was my comment regarding the fine labs (unintentionally as Guest). As it happens, the practice does have a portal where they upload results – eventually. It’s not enough to have a portal. It has to updated, and it has to be accurate. When the physician’s office did send me my results, I found multiple errors, from current medications to the number of tender joints, despite my report of these at every visit. The EHR is only as good as the person doing the data entry.

      • southerndoc1

        The data entry was probably done by your public resource (aka doctor) who was also having to take a history, count CPT bullets, meet MU requirements, generate a care plan, and transmit eRxs all at the same time. To think that the information entered in the EHR is going to be accurate under those circumstances is, sadly, a pipe dream.

        • Kay Dee

          Yes, I’m sure that must be a tremendous burden, and I don’t have a solution. In this case, however, most of the inaccurate information was entered by her medical assistant. The tender joint count was the doc, and as I’m sure you know, is a key piece of info regarding adequacy of treatment in RA, and a 2 where a 20 should be means the patient is suffering.

          • meyati

            A nurse entered the data about me needing a new antibiotic when I was discharged from the central-main hospital. I should have said that above.

      • azmd

        Most EHRs are designed to force data collection by the doctor and facilitate billing, not to facilitate seamless and accurate clinical record-keeping by the doctor. Furthermore, although everyone loves the requirement that doctor’s notes now be typed (by the doctor), the fact is that not all doctors know how to type, and so typographical errors will be made. Of course there has not been time made in our schedules to correct those typographical errors in any way that approaches being adequate, so I regularly see records generated by my colleagues that are riddled with errors. It’s just the norm.

        To say that “the EHR is only as good as the person doing the data entry” is slightly beside the point. The EHR is only as good as its user interface and that UI’s ability to help the physician more efficiently create a good clinical record. The vast majority of EHRs out there actually make it more time-consuming now to generate a good clinical note. I know because I am routinely up until 11 pm these days doing my notes, because they can’t be completed during my work day and still be accurate, complete and useful to other clinicians.

        Most doctors are aware that their notes these days are not very good. I also notice that although you say that you just requested your labs, it seems that you also requested your chart, went through it and then (probably) contacted the doctor or the office to review errors and express concern that your record was not accurate. It’s possible that the doctor knew perfectly well that that’s what you were going to do, and reacted accordingly. Although there’s nothing wrong with requesting one’s records (and I routinely tell my patients and their families to do so), doctors these days don’t feel very good about working in a system that forces them to generate a useless medical record and then encourages patients to review it and complain.

        • Kay Dee

          Point taken. However, as I stated, I requested my labs, nothing else. I have no control over what they sent me. I did not, in fact, contact the office to review the errors, nor do I plan to. I’m very sorry that you perceive a request for a correction as a complaint. I don’t enjoy medical errors made because the information in my chart was incorrect, and judging by your response, if I request a correction, I risk offending my doctor. Either way, I lose.

          • meyati

            Nothing like being hospitalized for infected dog bites-the ER gave me the wrong antibiotic in a very low dose. I was there by 15 minutes after the bite. 50 hours later I was hospitalized-My doctor said that the discharging doctor should/would prescribe the dosage for a new antibiotic when I was discharged from the hospital. I was discharged without any antibiotics because the people at the hospital weren’t reading it correctly. I argued with several staff members about this. So the process started again.

          • https://www.facebook.com/arobert6 Alice Robertson

            It will be nice when we can use a app and just show our doc what we need:) Instead of getting scripted the wrong antibiotic, or the overly cautious no antibiotic. A recent WSJ story had the data on it and it seems this is a widespread problem with doctors. But the biggest one is that doctors whine about EMR’s while using them to label most of us non-compliant. It’s unreal how many patients are finding that in their charts. I think the label comes right after the patient says, “But…..” Ha!

          • Tiredoc

            I believe my personal chart on my EMR has that diagnosis attached. If not, I probably should add it.

            I use that diagnosis when I compound “kitchen sink” pills with everything they’re supposed to take, or I used to until insurance companies stopped paying for compounded pills.

          • https://www.facebook.com/arobert6 Alice Robertson

            It’s a common malady….I am truly not surprised:)

          • Kay Dee

            I had a similar incident in the ER. I was diagnosed with C. Diff colitis and given the correct antibiotic, but in the wrong dose, and had to repeat the course of antibiotics with the correct dose.

  • azmd

    It might be useful for Dr. Udel to read (or re-read) Atul Gawande’s recent and excellent piece in the New Yorker on how to effect change in medical practice, “How Do Good Ideas Spread?”

    Familiarity with Dr. Gawande’s work might help Dr. Udel avoid such change-inhibiting habits as the use of condescending and punitive language i.e. “When taken to task…” and “holds health-care professionals accountable.”

    The task at hand is almost incomprehensible in its enormity: to accurately and consistently provide appropriate education and decision-making assistance on complex topics, customized to the educational level, personality style and emotional state of each individual patient. Rather than seeing ineffective communication as being something that doctors can be scolded or bullied out of, let’s acknowledge that it’s a daunting task (one that Dr. Udel does not actually have to engage in himself) and look for ways to collegially support our profession in doing better.

    • https://www.facebook.com/arobert6 Alice Robertson

      Or as Dr. Jerome Groopman in his wonderful book, How Doctor’s Think tells us that if you can’t explain it to a ten year old…you probably don’t understand it yourself:) It’s a book for patients, but it obviously has some rebukes for doctors who don’t really like the time it takes to educate patients but have no problem charging them for a visit.

    • rbthe4th2

      With all due respect azmd, we’ve been “taken to task”, “scolded”, “bullied” and made out like we’re stupid when we can learn to understand medical jargon. If I hadn’t been treated like an intern by one of my doctors who had this problem, I would have thought more highly of him. He didn’t communicate, he dictated. On top of that, if I have to interrupt a doc and say ‘can I get a word in please’, maybe the doc should have realized that its not all about him. Or his ego.

      • meyati

        I had to take in a tattooed biker grandson to get answers to my questions in the follow-up time frame. The creep wouldn’t even give me a clue on how long it would take to get prosthetics, how a wound like that would be cared for-removal of half of my face, including bone, nose of course.
        I greatly resent being treated and talked to as though I’m about 4 years old. It takes more than-you’ll do fine, trust me– I knew that he was lying when he said that I’d look exotic with an eye patch. Johnny Depp is the only person on earth that looks good with an eye patch.

        • rbthe4th2

          and that is what we’re asking for. Treat us like you would want to be treated. That doesn’t happen with all docs.

  • MedJ

    While I agree with your article on most points, I am slightly taken aback by your finishing statement.

    “It’s time to design a health-care system that holds health-care professionals accountable for meeting those needs.”

    I would rather have seen: “It’s time to design a system that allows health-care professionals to spend the time required to meet those needs.”
    There are good doctors and there are bad doctors (in this case I mean: as perceived by patients), but in my opinion most of the bad doctors are not “bad by choice”.

    You seem to almost -accuse- doctors of acting as information providers. The fact is that in the current system with it’s immense lack of time, being an information provider often seems the best way to respond to the needs of the patient. The doctor knows he is not fulfilling all of them, not by far, but he’s doing his/her best to approach that magical point of fulfillment.

    Don’t get me wrong: as I said I agree with your view of things and I certainly believe that progression is possible. It’s just that I dislike the notion of “accountability” or “punishment” when in most cases there is nothing but good will, yet lack of time, causing this frustration in both patient and doctor.

    • azmd

      However, to see the problem as one of “bad” doctors rather than a broken healthcare system that does not value time spent with the patient is much more satisfying emotionally and less daunting intellectually. After all, if the problem is that we doctors are “bad” and just need to have our attitudes adjusted, that’s something we can be scolded and shamed out of.

      Figuring out how to re-work an entire system of healthcare delivery to allow patients adequate (and expensive) time with their doctors is something that there’s a little less will to do, for many different reasons.

      • meyati

        No matter what the government or we say, a doctor is responsible for his patients. How long does it take to order a strep test? It takes the same amount of time as it did to tell me that “We talked about this before. You have stable chronic conditions.” Then that’s what was entered in my electronic chart. I had that sore throat and fevers for about 3 months. Some doctors said it was a virus, go home and rest.

        I finally found an 80 year-old doctor at an Urgent Care that ran a strep test and prescribed horse pill antibiotics for acute strep. While a doctor doesn’t have very much time-there should be time to practice medicine 101- sore throat complaint=strep test. Maybe the old doctor ran the test to just shut me up, but he ran it.

        • rbthe4th2

          I have had the same experiences: docs who took 20 seconds to explain something, make some comments that I didn’t ask him about looked up (only increasing my respect for the guy, he got it right) and boom, done. It didn’t end with, ‘its only mildly low’ or ‘everything’s fine’ or ‘don’t worry about it’ and not tell me why. Explanations don’t have to be long and drawn out. You don’t need to change the system to take 20 seconds to say, ‘I don’t believe from my experience & review of medical literature that your problems are caused by this, however, if they are, lets monitor the situation to see if that’s true in your case’.
          Docs are you all listening to that? I mean that is a solution that can work for everyone. You’ve made a decision, told us the decision, told us what you base it on, but are willing to be flexible, show you have LISTENED to the patient, and that (since the human body is not predictable) you’re willing to watch the situation and see if it is that problem. Patients can be right, but it would be nice if we’re not dissed completely. Some of us may have medical education we’re not telling you about … because if you treat us like regular Joes and not like each other … it tells us a lot about your character.
          RB

  • Tiredoc

    There is no universal method of communicating with patients. Some patients want jargon, as thick and heavy as you can lay it, before they will take your advice. They just want to think that you’re smart enough to tell them what to do. Some patients want an emotional connection, for you to show that you care about their lives. Some patients want to be educated, to understand what’s going on inside of them. Some want to educate you, to make sure your treatment fits into their worldview. Most need all of the above at one time or another.

    The most important thing to do is agree on the treatment goals. There is no jargon in goals. Do you want to fight to the end? Do you want to fight some, so you won’t feel like you’re giving up? Do you just want to feel as strong as possible for as long as possible? Once you agree on the goals, then you can work on how to talk through treatment.

    The worst question you can get is “what would you do?” That question means the relationship has flipped backwards. The patient shouldn’t be doing something to please the doctor, but to help themselves. What you get with patients trying to please you is patients lying to you.

    • Kay Dee

      Too true – patients all need something different, either from patient to patient, or visit to visit. Sometimes they need all of them at once. I don’t usually expect a significant emotional connection from my healthcare providers – I can’t imagine the compassion fatigue that would result for the provider. I would, though, be reassured to know that they realize I’m a real person, not a simulation, and that what happens and is said in the exam room or surgery often has a significant impact on my life outside of the rooms, that I might need to adapt to that impact, and that I might needs some help doing that.
      Thank you for bringing up treatment goals – that is more important that most patients realize. I think too many times we as patients have very different expectations for outcomes than our physicians. My doctor’s treatment goal may be that my ESR and CRP are WNL, while my treatment goal may also include less pain, better sleep, and better mobility. If I fail to communicate with my doctor on that point, shame on me.
      I’ve asked the “what would you do?” question of my doctor before, and it never occurred to me that they might think I was trying to please them. I was simply trying to avail myself of their expertise in making a decision, with my assumption being that my physician would have a more well-rounded perspective of all the implications of a given course of action than I would. I’ve been fortunate, I suppose, that the answers I’ve received have been very helpful, even when I chose differently. Thanks for the insight, though – I’ll be sure to consider that before I ask that question again.

  • Mengles

    What authority does Dr. Ubel who DOESN’T currently actively practice medicine, have in dictating to others about how they should practice. Not every patient wants things dumbed down.

  • http://www.CommunicatingWithPatients.com/ Edward Leigh, MA

    Thank you for the outstanding article! I work with physicians
    & other healthcare professionals to enhance their communication / engagement skills. Medical jargon is one of my hot button issues. The issue I see in coaching physicians is
    that most people have no idea how much jargon they actually use. There is a solution, “listen to yourself.” Sounds simple, but takes time to master. Many physicians tell me the skill helps them to “catch themselves” using jargon. For example, one physician told me he was about to ask a patinet about their colectomy and then immediately said,” I mean your colon surgery.” Thank you again for raising awareness of this very important subject.

  • DrDuh

    “The medical profession is a public resource, paid for handsomely by both government and private markets to serve patients’ needs.”

    This is fundamentally untrue, not to mention destructive and dehumanizing.

    Physicians are not a ‘public resource’ like the library or a park. They are individuals who have invested 11-20 years of post-secondary school training to reach the point where they can effectively treat people. Sure the government has supported a portion of their education and training, but that does not turn them into indentured servants. (That’s what debt is for)

    The problem is that third parties, insurance companies and increasingly the government have inserted themselves into the patient-physician relationship, usurping the patient’s centrality and making themselves the customer.

    In a better world, with the patient as the actual customer physicians would be able to talk to the patient, figure out how much information they were able and willing to process then work with them to develop a treatment plan optimized to their health *AND* values.

    In the world we live in, the physician is stuck staring at a screen checking off boxes in the EHR, rushing through a huge panel of patients because of low individual reimbursements and administratively mandated high overhead and metaphorically looking over their shoulder to see if a CMS auditor or worse, a plaintiff’s lawyer, is creeping up on them.

    This is no way to practice medicine. I predict a bifurcation, in which those who can afford it will pay cash to see real doctors in settings that cut out the middle man and facilitate quality care. Those who can’t afford it will be stuck seeing NP’s and will only be triaged to overworked employed physicians when they actually go off the cliff. Eventually, the legal jeopardy of ‘supervising’ NPs without actually directly supervising them will drive all entities except those that enjoy sovereign immunity out of business. Then you’ll be getting your ‘health care’ from the DMV. “Oh, you didn’t fill that form out correctly, go get a new one and get back in line.”

    The only solace that I have is that at least my family and I will have access to a real doctor, me.