Is The Empowered Patient too adversarial?

I understand the frustration and anger in CNN Senior Medical Correspondent Elizabeth Cohen’s new book, The Empowered Patient.  I agree that all of the horrible patient stories should have never occurred.  As a practicing primary care doctor who has witnessed near misses and bad medical outcomes affect family members, I too wrote a book encouraging patients to be informed and engaged about their care.

The problem is that The Empowered Patient is too adversarial.  If anything, it is biased, which is completely understandable given the failings of the healthcare system, and is not balanced.  If she had wanted a book that helped patients be informed, engaged, and a true partner in health, she falls far short.  Those of us working to make the healthcare system safer and more patient focused will find ourselves on the defensive as soon as we walk through the door if patients follow everything she says.

Chapter titles include How to Be a “Bad Patient” and How to Find Dr. Right (and Fire Dr. Wrong).  She reminds readers that “your relationship with your doctor is a business relationship. You pay her, and she takes care of your medical problems.  End of story.” Readers should consider firing their doctor if they “repeatedly have to spend inordinate amounts of time in the waiting room (more than fifteen minutes or so)”.  Yet, she hopes readers can find Dr. Right, someone who is an excellent communicator and someone you can trust and feel good about.

Through her stories in How to Get Good Drugs Cheap and Don’t Fall for Medical Marketing, Cohen implies that all doctors are influenced by drug reps, on the payroll of pharmaceutical companies, and only write expensive brand name medications.  She completely ignores how direct to consumer advertising cause patients to demand these “me too” drugs.

She doesn’t highlight the studies that show doctors when faced with this situation, though ambivalent, often acquiesce.  Cohen suggests that readers ask their doctors if they have “any financial ties to a drug or device company”.

In the section How to Avoid a Misdiagnosis, she illustrates two patients who could have died because doctors were about to begin chemotherapy and radiation treatments based on erroneous diagnoses. Using the internet, it was clearly apparent to the patients that the rare condition they supposedly had didn’t apply to them.  They didn’t fit the typical patient description for the illness.  The doctors’ failings were that they relied too heavily on the pathology reports. They should have looked at the complete picture and the pathology report in the context of the patient.  Instead, they anchored their decision solely on the pathology report.

Again, Cohen is completely silent about the patient aspect.  The same anchoring phenomenon can and has been occurring with patients. Increasingly far more patients are focused on what the test showed, whether blood work or CT scans and MRIs, instead of what makes sense based on a patient’s history and examination.  Patients are being to avoid office visits relying on technology to provide answers when these are simply tools and not necessarily the truth.

Armed with her information it is impossible to see if it is possible for anyone to find a Dr. Right or a time when patients can focus on getting better instead of being very vigilant at every point of care to the level of paranoia.  Perhaps that wasn’t her intent, but as a doctor on the frontline it is hard to see any other interpretation.

Though Cohen rightly notes that 99,000 Americans die annually from hospitalized infections and that 98,000 die from medical errors in the hospitals, she also ignored that 100,000 deaths could be averted if simple important interventions occurred.  Patients with hypertension had their blood pressure controlled.  Patients with heart disease had their cholesterol controlled.  Women at age 40 begin screening for breast cancer.  Both men and women at age 50 get screened for colon cancer.  Surely these are equally as important issues for empowered patients?

There were a few of sections that were worthwhile – How to Become an Internet MD, gives excellent and thoughtful advice on how patients can use the internet, Don’t Let a Hospital Kill You, and You vs. the Insurance Industry.

If there was any silver lining in her book, then it is as doctors working in an incredibly complex system comparable to environments associated with airline pilots, military aviators, and astronauts, we must do much better.  Saying medicine is different is not acceptable. We need to adopt highly reliable systems, systematically improve training to minimize inherent unconscious bias, and a serious dose of humility in understanding that patients concerns are legitimate and must be addressed.

Davis Liu is a family physician who blogs at Saving Money and Surviving the Healthcare Crisis and is the author of The Thrifty Patient – Vital Insider Tips for Saving Money and Staying Healthy and Stay Healthy, Live Longer, Spend Wisely.

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  • http://notimetoteach.com/2010/empowermen/ Fran London

    I agree, the concept of an empowered patient is most often too adversarial. I responded to this on my website (above) in a piece called, “Let’s stop talking about empowerment. It’s patient education!” It’s not about power. It’s a collaboration for quality health care, and the patient is part of the health care team. We all have responsibilities and rights. A position that instills fear and anger and does not offer a solution is not helpful.

  • http://participatorymedicine.org e-Patient Dave

    Hi, Dr. Liu. We’ve never met, so I have no idea how we’d get along if we did. :)

    So, what do you suggest we do, given that the vast majority of patients I run into (and she, apparently) have no CLUE of the unrealized dangers THOSE patients innocently walked into, and we/they continue to walk into every day?

    It seems quite clear to me that people need to be WOKEN UP about these issues, just as surely as they needed to be woken up about seat belts, smoking, etc. I’m sure you’d agree – what do you suggest? I’m all ears – this is what I’m working on these days.

    • http://www.drmartinyoung.com Martin Young

      Dave, when you fly, do you expect the pilot to inform you beforehand of EVERY single thing that could go wrong with the airplane, not to mention the pilots, weather, ATC etc?? How many thousands of possibilities would that be?

      Or is it enough just to know the plane may crash and you could be injured or killed?

      Where do you/we draw the line? I can’t yet see where your expectations of doctors can be applied in a practical manner that minimise each and every risk patients, and doctors for that manner, face?

      • Mike

        I’m sorry but sitting on a plane with a bunch of other passengers while a pilot flies us to a different city is not even close to being the same thing as laying unconscious on a gurney while a physician cuts you open and does stuff to your insides… or pumps chemotherapy drugs through your veins… or aims a gamma knife at your skull. Not even close. And if you think it is, I am frightened for your patients.

  • http://participatorymedicine.org e-Patient Dave

    Btw are you yourself engaged in any projects to reduce patient risk and harm throughout the industry?

    • http://www.davisliumd.blogspot.com Davis Liu, MD

      The organization I work for has been and continues to be focused on improving patient safety and reducing harm. Having written a book (in 2008) to educate patients on taking charge of their health, I don’t have a problem with empowering patients. As I noted, none of the medical errors should have occurred to anyone.

      What I am concerned about is the adversarial tone that Ms. Cohen takes in her book. As someone with a very visible platform (as a CNN Senior Medical Correspondent), a book that does not balance how patients can get the wrong care by focusing on getting an imaging test or asking specifically for a medication by name is not responsible or thoughtful.

      As other comments have noted, an adversarial tone and not a collaborative one, can result in unintended consequences.

      http://davisliumd.blogspot.com/2010/09/empowered-patient-is-this-what.html

  • http://secondbasedispatch.com Jackie Fox

    Wonderful post. I have been wondering about this adversarial stance myself and have to admit I’m getting a little tired of the “e” word. Disclaimer: I have not read Cohen’s book but boy do you see some heated exchanges on blogs, including this one, on that topic. In some cases I really think the “e” stands for “ego.” We’ve all heard about some doctors and their egos; but it isn’t any better when patients do it.

    Disclaimer 2: I have not had a bad experience so I don’t know how that feels. But my husband had a close call with an ER doctor who decided to stitch over a deep tendon cut in his foot that would have cost him a great deal of mobility. Our family doctor saved the day (I could go on about the critical role of family doctors but that’s a story in itself.)

    I know things can go wrong and healthcare professionals can make mistakes. I know from first-hand experience that some doctors do not care to be questioned. I do not believe that “Because I said so” is a valid model of patient care. Of course patients need to be assertive, just as we do in other areas of our lives. But I think we’re getting a bit carried away. It’s beginning to remind me of a vintage Saturday Night Live sketch about a woman who wrote a book called “Women Good; Men Bad.” Substitute “patients” for “women” and “doctors” for “men” and I think that’s where too many of us are coming from. The four doctors who guided me through breast cancer, starting with my family doctor, have earned my undying loyalty, and I know they aren’t the only ones out there. For every scary and bad experience, there are wonderful ones too–we just don’t seem to talk about them.

    And if you want to hear a doctor’s side of things, both when they go well and when all hell breaks loose, read “Complications” by Atul Gawande. It’s an incredibly compelling book. I just read it while on vacation–to be more precise, I scarfed it like a bag of potato chips.

    Jackie Fox
    Author, “From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer”

  • http://clinicalposters.com ClinicalPosters

    Truly adversarial excerpts, though admitted frustration can permeate for patients given a medical diagnosis that contradicts research. Sometimes the doctor really does not know the cause of an illness. For the sake of pride (and get on to the next patient), exhaustive research is not performed. As a result, the patient either remains undiagnosed or diagnosed with a statistically popular ailment that does not take into account all factors. (Hopefully this post is not adversarial.)

  • http://www.drmartinyoung.com Martin Young

    Medicine is a difficult art/science under any circumstances, and anything that makes it easier will benefit both recipient and provider of medical care. Antagonism makes it harder, not easier.

    I pick up straight away when patients come in with an antagonistic manner, and it CHANGES the way I deal with them, and certainly not for the better.

    The more helpful patients are, and that includes being their own advocates in every sense, the easier it is to get things right, and the little closer we can get to that unattainable 100% perfection in healthcare.

  • Greg

    Having read the book, I agree with this post – we as patients should seek a collaborative relationship with our doctors, and if a doctor is not willing to engage in this relationship, we should seek other options for care.
    Having said that, grilling your doctor like a prosecutor grilling a perp is not going to ensure said collaborative relationship. It may make us feel good to one-up somebody in power, but trust on both sides is eroded pretty quickly, and trust is the basis of the doctor patient relationship.

    I remember an incident where my wife wanted an MRI for her knee, which was in pain. Her primary care doctor, whom I see as well, didn’t think she needed one. Like an empowered patient, she went on the internet and printed out a whole bunch of “research,” and the next visit went 12 rounds against our doctor on why she should get the MRI. Exhausted, the doctor signed off on the MRI. Now, he signs off on pretty much anything she asks for. Any medication, any test, any procedure, anything. She feels like she scored some sort of victory against “The System,” but I actually fear for her safety. Her doctor basically just doesn’t care anymore. He knows if he refuses anything to her, she’s going to come in and blast him, so why not just rubber-stamp anything she asks for, consequences be damned. Now I have to change doctors (and I like this physician), because my wife didn’t know the difference between an empowered patient and an “Empowered Patient.”

    • Jman

      Unfortunately, this kind of thing further pushes the idea that the patient knows everything (since they can look it all up on the internet) and the physician is simply the gateway for the patient to get all their own tests (MRI, labwork, etc). As above, many physicians give in to this pressure from “assertive” patients for two reasons. 1) It’s easier, and there are more patients to see that day and 2) you avoid any possibility of lost patients and negative reviews on the internet.

  • http://www.dcpatient.us DCPatient

    I too must admit that Elizabeth’s book is still sitting as “next up” on my nightstand, but I wanted to chime in that I agree that being an empowered patient should not necessarily be adversarial. I consider many of my doctors as good friends and have worked with them on personal and professional projects or just enjoy warm remarks before and after all the clinical stuff. Empowered is different, however, from educated. You can have all the information in your head but if you don’t feel you have the right or the courage to speak up it does no one — patient or practitioner any good.

  • http://healthyweightcenter@hotmail.com Jennifer Warren

    I haven’t read Ms. Cohen’s book, but the statement “your relationship with your doctor is a business relationship. You pay her, and she takes care of your medical problems. End of story…” tells me an awful lot. With the emphasis on awful. I don’t think too many patients want to be treated like a mere “customer,” they expect that their physician will genuinely care about them as human beings, and will be interested in more than the money coming from the patient, for goodness sake! The doctor-patient relationship should be VERY different from a mere business transaction; I’m rather appalled that Ms. Cohen wants to reduce it to this!

  • http://www.somebodyhealme.com Diana Lee

    It’s unfortunately that she doesn’t seem to realize how many trade offs we have to make to keep these relationships at their best. Do I love it if a doctor keeps me waiting? No, but if he/she is the best for my condition, I will wait patiently for the kind of expertise he/she brings to my situation. You aren’t going to have it all with one doctor/patient relationship. Just like in every other area of life, you must focus on what’s most important to you and let the rest of it go. Keeping me waiting just isn’t that important at the end of the day if most everything else about the relationship is good.

    When I talk to other patients about being empowered it is all about the partnership. Patients can’t do it alone. Doctors can’t do it alone. We have to be partners with our care providers if we want to create the best possible outcomes.

  • Marc Gorayeb, MD

    What’s better than anchoring on a pathology specimen? Granted, I’d have someone take a second look at the specimen, but who wouldn’t treat based on a tissue sample?

  • http://notimetoteach.com/2010/empowermen/ Fran London

    In response to DCPatient (#11 above): If you don’t feel you have the right or you don’t have the courage, no one can give that feeling to you. No one took your power away from you. You still have the right to speak up, get a second opinion, or change doctors.

    I made the analogy to Dorothy of the Wizard of Oz in my web posting (http://notimetoteach.com/2010/empowermen/). She had the power to go home all along – she didn’t have the knowledge on how to use that power. The lion had courage. He didn’t have confidence to recognize it. We can’t empower people, because there is no transfer of power. We can only teach them how to use the power they have. And that is not adversarial; that is collaborative. It’s relationship and partnership.

    • http://www.dcpatient.us DCPatient

      Dear Fran (#16) power is energy converted. Power can be conducted and transmitted. Patients are not em-powered by education. Most people know that they should eat less and exercise more. Power comes from believing that you can make choices that have impact and making them. That can be very ambitious for many from cultures that are hierarchical, authoritarian, or where their views are not welcomed or appreciated. To assume everyone comes from and feels comfortable in a “rights” culture, stomping around changing doctors and demanding second opinions, does not reflect reality. Empathy, support, receptivity,changing expectations, tapping into motivations, all these help patients generate and exercise their power in healthcare as in other situations.

  • Mike

    So the only sections you felt were worthwhile involve patients interacting with the internet, the hospital, and the insurance industry. Nothing about interacting with doctors was useful. And you claim SHE is biased. Thou doth protest too much.

  • Mudpie

    In the section How to Avoid a Misdiagnosis, she illustrates two patients who could have died because doctors were about to begin chemotherapy and radiation treatments based on erroneous diagnoses. Using the internet, it was clearly apparent to the patients that the rare condition they supposedly had didn’t apply to them. They didn’t fit the typical patient description for the illness. The doctors’ failings were that they relied too heavily on the pathology reports. They should have looked at the complete picture and the pathology report in the context of the patient. Instead, they anchored their decision solely on the pathology report.

    On this one, I’m one of those statistics and can tell you, if I had not done my own homework, I would have died for the misdiagnosis.

    Scheduled to see an oncologist after five doctors could not figure out what was wrong with me, I finally hit Dr. Google and entered a variety of keywords with my symtoms and labs. What popped shocked the hell out of me and was, ultimately, my diagnosis.

    A call to my doctor the next morning was met with resistance, I was “fooling myself” if I thought it was ABC and not XYZ. I insisted on the one simple blood test to rule out ABC and said if that was negative, I would apologize and go meet with oncologist.

    Doc very reluctantly agreed. I think, looking back, he feared I’d sue or something. I had no intent to sue, I just wanted to know what the hell was wrong with me!

    That night, doc called me a midnight. Apparently the blood test came back positive and not only that, I was in the fatal zone of the result. The lab had called him that late because they could not hold the result until morning, I was in that level of danger of dying.

    I was told to leave my house, to go to the hospital ER, they were awaiting my arrival to begin hyperbaric oxygen treatment. The only thing they could do at that point in time to begin to reverse my diagnosis – occult carbon monoxide poisoning.

    With very few minor issues lingering a year later, I am still a bit angry five different docs didn’t connect the dots, but no, I am not suing. I am alive and I am much better and I know how difficult it is to make such a diagnosis.

    The thing that makes me angry though, is my diagnosis would have come earlier IF they’d taken the time to do a lifestyle inventory or asked about things outside my symtoms. They didn’t – they relied solely on labs and tests, all of which pointed to too many other things and not the problem…..the simple act of time and Q&A could have led to my diagnosis a year earlier!

    • http://clinicalposters.com ClinicalPosters

      Diagnosis would have come earlier IF they’d taken the time to do a lifestyle inventory or asked about things outside my symptoms.
      Mudpie, I think you hit he nail on the head. Many pathology reports are mere clues to conditions: ‘Statistically 60 or 70 percent of patients with this marker may have condition xyz.’ Patients often assume when a blood test is sent to the lab, tests are performed for every possible condition. The truth is that only specific tests ordered by the doctor are performed on the blood or biopsy. If the Doctor is not interviewing properly to ascertain a complete patient history and consider possible environmental factors, the presumptive diagnosis, resulting lab tests and subsequent pathology reports may weakly support an erroneous conclusion. It is sad when the patient must verify the diagnosis but sometimes there is no other advocate.

      Your case sounds strikingly familiar to another (perhaps too many others), where a patient suffered for 10 years as multiple doctors repeated the same negative tests. Prescribed medications only exacerbated the symptoms. Through the persistence of the patient, a plumber ultimately healed the patient. http://bit.ly/bRIojV

  • Coco

    I am voting strongly in favour of being an Empowered Patient and treating it as a business relationship so obviously I am in the Cohen camp and out of step with many of the posters here. Why? Because of my personal experience where breast cancer remained undiagnosed for 13 years, 12 of which I was undergoing biennial mammographies and being told all was well when it wasnt. My repeated attempted to get an MRI refused. To the husband whose wife gets an MRI when she wants from her GP, I envy her. The fact that she is a fesity women and you feel you can’t see this GP anymore is odd – after all, you are a grown adult and can choose your GP yourself can’t you and can’t you trust this wonderful Dr to treat you as a being independent from your wife? If you can’t, then I suggest the Dr is not as wonderful as you say especially if you are being given short shrift because of an issue between the Dr and your wife. Secondly, I spent my professional life seeing the disasters from medical mistreatment so in my eyes no Dr – even the most eminent – is god like. They are all human, have their bad hair days like anyone else except unlike their bad days or inattention can leave us horribly injured, in pain or dead. A higher standard has to apply to them. Finally, I often come across friends and aquaintences who are harmed by Drs. In the past two weeks my friend George was nearly killed by a Nuclear medicine technologist and a specialist heart surgeon, both of whom failed to tell him to quit his high blood pressure meducation before a test and failed to get check on his medication use before starting the procedure. His heart rate dropped alarmingly and his blood pressure as well. His heart muscle is still aching and is probably damaged permanently as a result. George is one of those patients who don’t get on the internet and till recently trusted the Drs to be professionals and know what they are doing. He used to rib me about my obsessive checking of every detail of any procedure I was scheduled to undergo and my list of pre-prepared questions. In Australia we have an imported from the US surgeon dubbed Dr Death – real name Jayant Patel – on trial for killing and maiming people and another called Dr Graeme Reeves for sexually mutilating women’s genitals amongst other things. Mengele was a medical practitioner. I think all patients need to be super alert, educate themselves to the nth degree and be adversarial with all medical practitioners. I think the biggest mistake most women patients make is being far, far too compliant and trusting.

  • http://notimetoteach.com/2010/empowermen/ Fran London

    Coco, I agree there are horrible things going on out there. Mistakes are always being made. I agree, with all things in life, it is risky to be too compliant and trusting. However, those are lessons each person needs to learn personally. No one can empower patients to be less compliant. They have the power right now. They just have to learn it is OK to ask questions, and seek a second opinion if it doesn’t feel right. I agree, just as we educate ourselves on the competency of our plumbers or electricians, we should do that for our health care providers.

  • http://notimetoteach.com/2010/empowermen/ Fran London

    To DCPatient #17: I agree with you! I do not assume everyone feels comfortable in a rights culture. But when they say they need more power, my response is direct: you have the power. That opens the conversation to “what do I really need?” or “what needs to change for me to get what I want?” I think useful answers come from asking the right question. If you ask “how can we empower patients?” you have to figure out what power the are missing that you can give them. If you ask “how can we help patients believe they can make choices?” you get a whole ‘nother set of answers.

  • Coco

    I was inspired to get on to Amazon and order Cohen’s book as a result of this. I hope to get more tips on what I need to be careful about. I am perfectly comfortable if the book is adversarial in style. One person’s adversarial is another person’s assertiveness – I have found the stronger or milder word is used often depending on whether one is on the receiving end verus the emitting end! Patients who research issues thoroughly, ask pertinent questions and are vigilent about their safety, well being, pain management, care and follow up should be a relief to Drs as most I know complain about their patient’s lack of interest, compliance and investment in their personal health. It can be a delicate dance getting it right, but give me highly competent professional anyday with poorer bedside manner versus the hand holder who caters excessively to one’s emotional needs to the extent that the disease suffers slippage. I vote for competence as the highest priority any day.

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