Empowered patients need to ask themselves a basic question

I have nothing against the patient empowerment movement.  In fact, I think an informed and collaborative partnership is mutually beneficial.  But I can’t help but laugh when I read some of these tweets.

Death to paternalistic medicine!

The age of paternalistic medicine is over!

True, the era of doctor knows best is long gone.  But it’s a mistake to think think today’s health care consumer has any more leverage than before.  It just seems that way.  The reason is that the strings are being pulled, and the levers are being switched in a slightly more diabolical way.

If you want to know the root of any modern problem, either follow the money or follow the power.  You think you have control over your health care decisions, but in reality, many are being made for you before you even step foot in the office.  You see, your options are being whittled long before the exam room door is breached.

Want to spend thirty minutes talking about end of life care?  Good luck.  The government has deemed that doctors shouldn’t get paid for such conversations.  Guess who will try to avoid them at all costs?

Want a PSA test?  Well the USPSTF has deemed that they are not beneficial (which I agree with by the way), and eventually Medicare and private insurance will refuse to pay for them.  Most physicians will avoid offering such tests if they are going to be dinged on quality and cost efficiency metrics.

You just had a heart attack and your cardiologist thinks you need a defibrillator.  Not so quick.  You’ll be offered a defibrillating vest first until you wait a certain number of months, unless your doctor wants to get investigated by the Department of Justice.

It’s not that I don’t agree with some of these decisions.  Some make sense.  But don’t think you have power to control your own destiny.  What once was the purview of your trained doctor has fallen to an array of nonclinical and barely clinical administrators in Medicare and private insurance.

So empowered patients of the world might just want to ask themselves a basic question.

Who’s your Daddy now?Empowered patients need to ask themselves a basic question

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

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  • Matthew Mintz

    Provocative post. I would say that rather than “Who’s Your Daddy”, the basic question that empowered patients need to ask is “How much are you willing to pay beyond what your insurance covers?”
    Some of your examples (discussing end of life care, PSA testing) and plenty of others assume that the patient stays in the Medicare/insurance based system. Empowered patients (which I love) who have many questions, appreciate a dialogue with their doctor, and would like their physician to be their advocate will likely not be satisfied with the 15 minute visits most insurance only physicians can give. Until our broken health care system rewards primary care physicians for serving this role, empowered patients are going to need to look outside the current system and likely pay more money.

    • Suzi Q 38

      Some doctors don’t even bother to ask if you have good insurance.
      I needed an MRI, and the doctor only ordered the L spine.
      He needed to order the T and C spine MRI’s as well, but he thought that the insurance would put up a fuss.
      I have PPO!!!
      All he needed to do was ask and then order.
      It would have saved me two years of steady and very slow weakness and eventual partial but permanent paralysis in both legs.

      • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

        Did you communicate your concerns about what tests should be ordered?

        I am so sorry you suffered because of the system.

        • Suzi Q 38

          Yes, I did.
          Since the pain and weakness was in the legs, he assumed that the problem was only in the L spine.
          It ended up being in the C spine.
          I didn’t know much about it; I just wanted the whole spine pictured. This would have been really expensive, but I am a very persuasive patient when it comes to insurance companies.
          The problem is that I trusted the judgement of the doctors.
          My bad. I thought that since he was a neurologist, he knew far more than me (which he did).
          Problem was that I had a hunch based on what I was feeling.
          I feel that he should have agreed to order it.

    • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

      What do doctors mean by “broken health care system”? Patients usually mean “broken health care system” that we feel doctors very often don’t care about patients anymore because docs are resentful of paperwork, reimbursement rates.

      And where “outside the system” do patients look for care? Direct pay models?

      Assuming they are able, patients are willing to pay the real cost of medical care. Insurance and government programs have skewed the real cost of medicine.

      • Matthew Mintz

        By “broken system” I mean that doctors are so burdened with paper work and are reimbursed at such low rates (at least for primary care) reqiring them to see so many patients that they don’t have nearly enough time to spend with their patients.
        By “outside the system” I mean outside the insurance based system. This can mean direct pay (cash only), direct primary care (monthly fee), or retainer (concierge).
        While I believe many patients are able and willing, many don’t because their insurance premiums are sky high. The common thought is “why should I have to pay extra when I am already paying so much.” This feeling is completely valid, but the fact is that most insurance premiums are not going to pay for your 15 minute primary care visit but for very expensive (and often unnecessary) tests and procedures.

        • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

          Good to know “broken system” is not caused by patient
          behavior. I agree that patients need to know the real cost of medical care (ie. direct care) in order to appreciate the issues docs have. (Patients want to pay as little as possible, patients expect docs to file insurance, docs get squeezed. Even more of a problem when docs are expected to see # number of patients per day.)

          I just don’t want docs to start blaming empowered, active, etc patients. The “broken system” creates conflicting expectations between doctor and patient. Craziness.

  • http://www.facebook.com/Cheryl.A.Handy Cheryl Handy

    Wow. Where’s the love for the empowered patient?

    Frankly, as a patient advocate, I agree with you in large part. I don’t think that an empowered patient has any business dictating medical care. I don’t even like the term “empowered patient” because of the negative connotation of a power play between doctor and patient.

    The best way to be “empowered” as a patient or patient advocate is to be an active member of the medical team. That doesn’t mean to dictate medical care and it doesn’t mean merely taking notes and following doctors’ orders in unquestioning lock-step.

    The best patient care can be achieved when patients assume their roles, listen to doctor, engage doctor in questions when appropriate, communicate concerns to doctors. The expectation of any patient should only be that the doctor actually listens and works with patients in the interest of wellness and health.

  • carolynthomas

    “Who’s Your Daddy?” indicates a pretty jaundiced view of what an “empowered” patient is (and I’m with Cheryl – I’d never use that word “empowered” because it just raises the hackles of defensive physicians, and that’s nobody’s intent (well, hardly anybody – except maybe those agitators who Tweet things like “Death to Paternalistic Medicine!”)

    Let’s revisit the examples you listed here (some of which you apparently regard as good evidence-based medicine that actually protects the interests of patients):

    - PSA tests (you, the USPSTF, and a number of randomized clinical trials like PLCO have concluded that the evidence for PSA screening is just not there, despite the fact that doctors have been deliberately ordering these tests unsupported by scientific evidence)

    - ICDs (in January 2011, JAMA reported that 20% of ICDs 20 percent did not meet evidence-based guidelines for implant, and that these patients had a “significantly higher risk of in-hospital
    death than individuals who met criteria”)

    In these and in all other cases in which a treatment recommendation is not evidence-based (e.g. when patients request antibiotics for a viral infection), doctors do what they’ve always done: follow solid treatment guidelines. I just don’t see these decisions as examples of the “power” of blameworthy patients.

  • Homeless

    Perhaps I am not empowered…just bitter.

    Being empowered means that you are not some pawn in a game that just wants to make a buck of your misery.

    What’s the point of discussing end of life care with a PCP if that provider is not involved when the physicians at the hospital will do whatever they want? Perhaps a lawyer would be better for such discussions.

    It’s cheaper to order a PSA online without a doctor visit.

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

    Absolutely love this post…
    The dark side of course is that physicians are simultaneously being engulfed by the tentacles of the same Daddy…..

    • http://twitter.com/NCAPIPComms NCAPIP Communication

      Inaccurate. The “darkside” is that physicians AND patients are simultaneously being “engulfed.”

  • Payne Hertz

    There is no such thing as an “empowered patient.” Empowered patients don’t have to discuss end-of-life care, pain management or any other topic with anyone, unless they want to. They make their own decisions based on their own preferences and don’t need a permission slip from a doctor or insurance company to live their lives the way they want.

    In the real world, patients are completely at the mercy of the medical industrial complex and the laws that have been set up to protect its monopoly and profits. You can’t even order a test you think you need without a doctor’s approval, even if you pay for it yourself. You can’t get emergency treatment for pain without paying out the nose for it and even then you probably won’t get it or at most just an afternoon’s worth of mild relief.

    As an adult, I’d like to decide what i do and do not put in my body, and the manner in which I exit this world. I don’t want to have a discussion about end-of-life “care,” especially not with a doctor, politician, priest or anyone else that doesn’t care.

    I want to go the Grand Canyon, sit down near the rim, light a nice fire, and then die a death that is truly dignified using drugs that do that job painlessly and surely. I don’t want my options to be limited to free torture outside the system or paid torture within it.

  • Molly_Rn

    WOW! Obviously a
    hot button has been pushed. I think but could be wrong, empowered (a stupid
    word if there ever was one) really means feeling that you can ask questions and
    not be seen as a difficult patient. My husband, a physician, and I have often discussed how difficult it is when you are very ill or have a bad diagnosis to not “play good patient” even if you have your doubts about something your physician says or does. You don’t want to anger him (or for that matter the nurses in the hospital) for fear they will abandon you or give you less
    care. This is a real phenomenon. I spent a week seriously ill in hospital with lobar pneumonia (virtually loony tunes for first three days with 1050 F temp) but didn’t worry about being the good patient as my internist is a dear friend and a wonderful physician. He “empowered” me to just be sick and not play the role of good patient to curry his favor and care.

  • drjoekosterich

    He who pays the piper calls the tune- it was ever thus

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