The Fastest Way To Disempower, De-Activate, and Disengage Any Patient

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I may not know how to tell the difference between an empowered patient, an engaged patient, or an activated patient.  But I do know that fastest way to disempower, disengage, and de-activate any patient is a trip to the doctor’s office or the hospital.  A visit to an average primary care physician (or specialist) is to an empowered/activated/engaged patient what Kryptonite is to Superman.  It will stop all but the strongest willed patients dead in their tracks.

We patients have been socialized that way.   Think about your earliest memories of “going to the doctor.”  For me, I remember my Mom taking me to the Pediatrician.  Early on I learned by watching the interaction between my Mom and the doctor that they each had a role.  The doctor’s role was that of expert – he spoke and my Mom listened.  I was there just to have one or more extremities twisted and prodded.  And oh the medicinal smell…

Things haven’t changed much in the 40 years since I was a kid sitting in Dr. Adam’s office.  Well maybe the smell isn’t as medicinal.  But the roles played by doctors and patients haven’t changed much.   Studies over the last 30 years consistently demonstrate this unfortunate reality.  If you were to believe the admonitions of the NIH, AHRQ, hospitals, pharma and every WebMD-look alike, you would think that patients these days would be more involved in their visit…asking questions, sharing information and making decisions.  But as most physicians will attest…most patients don’t have much to say in the exam room anyway.   And the longer they have to wait before being seen, the less patients are likely to bring up the few questions they wanted to ask.

This is a huge problem.  It belies conventional wisdom that the key to fixing health care begins and ends with changing patient behavior.  If only we could get patients to be more compliant, if only patients would do what I tell them, blah, blah, blah.

Physician behavior, specifically, the way they think about, relate to and talk to patients needs to change (no e-mail, text messages and social media will not solve this problem)…before long term, sustainable change in patient behavior is possible.

Trip to Doc OfficeIf you look at most theoretical models underpinning patient empowerment, patient activation, etc., you will see that none of them factor in the impact of the care delivery context, e.g., doctor’s office, hospital room, surgery suite, or pharmacy, on patient behavior.   A patient considered Stage IV (Activated) on the Patient Activation Model (PAM) or the “Action Phase” using Stages of Change would “crash and burn” if their doctor is among the majority who employ a traditional physician-dominated, biomedical communication style or “bedside manner.”

How empowered, activated, or engaged can a patient be if they don’t know when to open their mouth, are ignored , or fear taking up too much of the doctor’s time?

Yes you can and should probably change physicians…but since so many physicians “practice” the same way…even supposedly Patient Centered Medical Homes…what’s the point?

Until health plans and providers take a serious look at incentivizing physicians to become more patient or relationship centered, behavior change efforts directed at patients can only accomplish just so much.

That’s my opinion.  What’s yours?

Sources:

Cegala, D. An Exploration of Factors Promoting Patient Participation in Primary Care Medical Interviews.  Health Communication, March 2011.  1–10, 2011.

Related Posts:

6 Seconds To More Effective Physician-Patient Communications

Lack Of Time And Reimbursement  – Is That Why Physicians Don’t Do a Better Job Communicating With Patients? 

37 Comments

  1. Rebecca Coelius says:

    I couldn’t agree more with your characterization of the patient experience, however I think you scapegoating doctors rather than thinking about the whole system as the culprit behind disempowering patients.

    I’m in med school at UCSF and learning how to engage the patient in their care, make room for their questions, and elicit their own conception of their illness and priorities is a huge part of our training. I’ve been truly surprised by this- its both a longitudinal part of our curriculum during the first two years, and then becomes something we are graded on during every single clinical rotation third and fourth year. I’ve heard from friends this is a priority at other medical schools in the country too.

    So why isn’t this happening when you see the doctor or are hospitalized? I am going into primary care- and when I see the hamster wheel the physicians there are caught in its no wonder there is no time for patient engagement. You try to really dig into a persons feelings and fears in 15 minutes along with addressing all of their other acute and chronic dx issues. This is both a payment issue and one of PCP shortage- in clinics that are financially sustainable we still feel morally obligated to see as many patients as possible in a day when we have hundreds waiting to see a provider for the first time. (A huge problem in the SF Community Health Clinics). Everyone touts the PCMH as if it will fix this problem- but in the high functioning clinics I visit its still a matter of rushing patients from one healthcare professional to the next, nobody can actually take the time to sit and treat you like a person. Unless these clinics are part of new blended payment models, they also rely entirely on their MDs or NPs for the income to support the entire clinic staff (since you can’t bill for services provided by the MAs or RNs). Thus the providers are still just as harried, if anything have less time to get to know you because its considered not working “at the top of our license” (really, that line is starting to make me sick. I am more than just a diagnostician, and really knowing my patients plays a huge part into how we together create a treatment plan).

    Instead of blaming all doctors, join with many of us in recognizing that our healthcare system incentivizes and values all of the wrong things. CMS is making moves to change this, check out http://innovations.cms.gov/initiatives/cpci/

    • Rebecca,

      Thanks for your comments. It’s true that a lot more emphasis is being placed upon teaching new physicians patient communication skills. What is also true is that withing a matter of a few years of leaving medical school, these new physicians lose many of those skills as they adapt to the performance and productivity requirements you cited. Like it or not, poor physician-patient communication skills among established, practicing physicians is a major contributing factor to non-adherence, poor outcomes, higher er us and re-hospitalizations and poor patient experiences. I don’t make this stuff up. The data is there for all to see.

      It is not my intention to “blame” physicians…it’s just that patient see their doctors 10 times more often than any other point of health care contact.

      Steve Wilkins

  2. Rebecca Coelius says:

    I believe you miss my point. It is that physicians start out with these skills, and believe in using them. When they disappear we must ask why, and address these variables if we want to solve the problem. (many studies exist to identify these) You do not need to convince doctors as your post suggests, most already agree with you and are just as frustrated by the status quo.

    • Rebecca,

      I take your point. I do not agree that most docs agree with you or I however. The excuse frequently given by physicians for not “being better communicators” is the lack of time and reimbursement. The evidence does not support at least the issue of lack of time. On fact patient centered communications, the gold standard, adds about 6 seconds to the visit. If employed over time with the same patients visits could be shorter if needed. Conversely, adding 5 minutes to the visit wouldn’t improve doctor-patient communication since doctors would still employ their physician-directed style.

      As for needing to be paid more to communicate more effectively with patients…do I really need to address that?

      Sure there are lots of things wrong with the care delivery and reimbursement models at play. But given how easy it would to improve the quality of doc-patient communication and the demonstrated benefits in terns of outcome one gas to wonder why it is still such an issue.

      • drrubin says:

        Unfortunately, time is a factor, especially when you are a provider in a clinic that is a “catch all” and sees all those patients that private practitioners may not for various reasons (e.g., Medicaid). Those of us in that situation could schedule patients every 10 minutes and still have dozens more who want to get in! Sadly, this is often the population of patients who need even more time than is available, and so many issues and concerns arise that it is difficult to remember to be patient-centered. The provider is just hoping to address all the pressing concerns in the precious minutes he or she has. It is easier to be patient-centered when the patient has one complaint; it proves much more difficult when the patient wants to address his/her chronic back pain, abdominal pain, depression, need to quit smoking, poor sleep, etc., etc. Asking a patient to reschedule to discuss the issues in more depth is often met with reluctance, understandably so considering the next visit might not be covered, they waited so long to get in, took off work, got a babysitter, etc. The real world is never as pretty as the research and best practices imply it is.

        Until we change the way primary care medicine is delivered, for example, using a team approach and individual case management (physician, nurse, case manager, etc.), and until this new paradigm is reimbursed, there will continue to be a disconnect between what is best for the patient and what the busy practitioner can deliver.

  3. Muddy Waters says:

    Steve,
    Ms. Coelius is spot on in the fact that this is very much a money driven system that rewards for quantity rather than quality. Maybe that will change with new rules coming with the new healthcare laws, but I have my doubts.
    But my view of doctors is not as generous as Ms Coelius’s. I would like to share an experience with you.
    Years ago I went to the ER at University of Utah because I had a piece of food stuck in my esophagus. Quite painful since they muscles in the esophagus were spasming and cramping in response to this food being stuck. After waiting for three hours. They said they would call in the on call gastroenterologist to do an endoscopy. Now it is about midnight. I am up in the endoscopy lab with my wife and a intern/med student. The attending walks into the darkened lab and the first thing out of mouth is “Is this the dummy?” He was a little surprised when I raised my head up and looked at him since he thought I was already sedated. He asked the intern why I was not sedated already. He reminded the attending that he was not allowed to administer drugs without the attending present. So now the attending says to start the procedure. The intern asks about the need for sedation. The attending says to procede without it. I have never had this procedure before so I just had to trust this person would be professional in his care. That was a mistake. I think I will always remember that experience of someone trying to shove a inch thick two foot long tube down my throat gasping for breath and tears flowing. It’s a lot like being strangled. Finally he told the intern to adminster the sedation. And they were able to dislogde the food. Was the torture necessary? No, of course not. So why? Because the attending got called out in the middle of the night and he did not want to be there one second longer than he had to be. So it was easier for him to give me a torturous experience in the hope that he could do the procedure quick with no sedation, rather than wait around for me to wake up from sedation. Tried to complain but everything was denied. What is the point in having healthcare if your experience leaves you in a state of mind in which you think you would be better off NOT going to a doctor for your ailments.

    • Rebecca Coelius says:

      Really sorry you had such a horrid experience. I would certainly never argue that there aren’t unfeeling, unprofessional MDs out there as in any profession. Another unfortunate aspect of our health system is that unlike other markets consumers cant usually make the informed decision to take their business elsewhere, and put him out of a job. Even with online grades, Yelp, etc most insurance coverage doesn’t let you actually use this information to choose who you receive care from in a meaningful way.

  4. Abby says:

    Stephen, I don’t back down when I encounter a traditional physician. I ask my questions. I ask for my records. I provide pertinent information. I ACT LIKE an empowered patient. But it’s only possible to BE an empowered patient when the doctor is an active part of the process. An empowered patient can ask questions. That doesn’t mean that the doctor will provide an answer. An empowered patient can request notes and test results. No guarantee that those will be provided either. An empowered patient can provide information. No guarantee that the doctor will listen. And, truly, empowered or not, the patient’s only real recourse is to find another doctor, when that is an option. When it’s not, we are stuck with “half a loaf is better than none.”

    Incentives are half the story. The other half is the lack of disincentives. Whom, exactly, do doctors answer to? Malpractice suits do not address the sort of routine bad doctoring that leaves people undiagnosed and untreated or inappropriately treated–the kind of doctoring that ruins quality of life, but leaves no scars. (I recently met a man who had been treated for depression and adult-onset ADD, when what he really had was a raging case of hypothyroidism–symptomatic for a decade.) Medical misconduct boards only address the most egregious behaviors. Who demands good routine care on behalf of patients? No one.

    No matter how empowered the patient, the doctor sets the tone and holds the power in the relationship. And, that is why I am so grateful when I find a compassionate, competent, and committed physician. I know that he or she could get away with doing much less.

  5. JD Wright MD says:

    Stephen, thanks again for really cutting to the heart of a big problem in our health care “system.” As you may recall, I am a physician, a hospitalist, and have been in practice for over 30 years. So I’ve seen a lot. I don’t often observe other physicians interacting with patients, but when I do I am often appalled. Doctors often don’t listen (I mean really listen) to patients.

    (I should define this kind of listening to distinguish it from the usual listening doctors do. True LISTENING requires prolonged moments (several seconds) of silence on the part of the listener, while the patient is telling his/her story. It also requires eye contact and the giving of the doctor’s undivided attention during these episodes of listening. Many physicians will say that they just don’t have the time to do this. It’s just too time consuming! But it’s really not. The hard part (for doctors) is to relinquish control of the interaction, even for a short time. We doctors were trained to BE in control, not lose it. It’s a fantasy, of course, but all the more reason not to take chances and ask too many open ended questions.)

    These doctors usually do most of the talking, telling the patient and/or family what they (the doctor) think is happening and what’s going to be done about it. That’s fine – as far as it goes – IF it’s part of a two way discussion with questions and comments from the patient taken seriously and thoughtfully answered. This doesn’t happen very often.

    Remember I said once that a major shortcoming in medicine is that we treat the disease, not the patient? It’s still true. Consider the unfortunate patient who presents to the ER with chest pain. He’s admitted and “worked up.” The usual suspects are all ruled out: e.g., heart attack, blood clot in the lungs, aortic aneurysm, GI disease. The patient has no disease, so in the eyes of the doctors there’s nothing to treat. He’s told to go home, that there’s nothing wrong. But the patient still has pain! The patient is still sick, maybe not very sick, but he is still as sick as when he came to the ER. If this patient complains or gets upset, he’s labeled as unreasonable, or suspected of seeking pain medicine for improper reasons. At the very least, his complaints are de-legitimized (if there is such a word). I think the interaction would be much better if the doctors could shift their focus to treating the patient. Just because we can’t explain someone’s symptoms does not mean we must deny them or accuse the patient of faking it. (But wait…this would be a little too much like losing control, admitting we didn’t know something, that we couldn’t explain something even though we acknowledged it.)

    For these reasons and more, doctor-patient interactions sometimes suck.

    JD Wright MD

    • JD,

      Again, you have hit the proverbial nail on the head from my perspective…and very eloquently too.

      Thank you!
      Steve Wilkins

    • Leslie says:

      Nice to hear that from a physician. So many times, patients are labeled demading/crazy/anxious/despressed, simply because they are stressed with not feeling well and/or getting a proper diagnosis. The more frustrated they become after feeling dismissed, the “crazier” they are to the healthcare providers.

  6. southern doc says:

    Agree with everything you say, Dr. Wright, and I agree with ALMOST everything that Mr. Wilkins says. But he seriously undercuts his message by claiming over and over that these problems can be fixed in only 6 seconds. I’m not familiar with the study he is referring to, but I”m sure it was conducted in some sort of controlled situation: one problem, no interruptions, and so on.

    This is the reality of today’s primary care office visit. 15 minutes: 4 minutes used for data entry into the EMR (has to be completed by the time the patient leaves); 3 minutes for entering lab orders and referrals; 90 seconds for reviewing health maintenance needs that have no relation to the visit at hand; 60 seconds for prescription reconciliation; THEN the six active problems can be addressed. There is no time for communication for any type, much less patient-centered communication!

    To pretend that the time factor is not an overwhelming obstable to improved communication is really ignoring the elephant in the room.

    • Southern Doc,

      It scares me when people agree with me…lol.

      Here are some references in case you are interested. I don’t make this stuff up.

      Here’s a great quote that speaks to the issue of time. “The most productive technique for time management (during the office visit) is to improve the physician’s communication skills.” Source: Braddock CH, Snyder L. The doctor will see you shortly. The ethical significance of time for the patient-physician relationship. Journal of General Internal Medicine. 2005;20(11):1057-62.

      This article is where the 6-seconds comes from. Marvel, M. K., Epstein, R. M., & Flowers, K. (1999). Soliciting the Patientʼs Agenda: Have We Improved? Methods, 281(3), 283-287.

      Epstein R, Mauksch L, Carroll J, & Jaén C. Have You Really Addressed Your Patient’s Concerns? Family Practice Management. 2008. Vol.15, pp. 35-40.

      Steve Wilkins

  7. Mark Shipley says:

    Stephen,

    As a marketer working in healthcare for most of my career, I’ve seen the data and experienced the anecdotal – customer service [the patient experience] is definitely a big problem in both hospital and practice environments. As an entrepreneur, business owner and student of management best practices, I have do disagree with placing all of the blame on the physician, or the patient [customer] for that matter. I also disagree with the comments that changing physicians’ [financial] incentives or lengthening patient visits to allow for better “communication” will solve the problem. It’s not about time and money.

    There is something larger at work here – a broken industry and organizational culture – and fixing that will take top down leadership and vision, along with large doses of perseverance and patience. It is human nature to take cues from the cultural environment and act accordingly. If the hospitals and physician practices can’t get their houses in order, how on earth can we expect patients to change their behavior? We have to re-teach an entire industry how to treat its customers.

    In 1965, United Airlines faced a similar challenge. Born out of the military, the airline industry was regimented and inflexible – and far from customer-centric. After all, the health, safety and very lives of their passengers were at stake every time a plane started down the runway. Sound familiar? Pilots were highly technical practitioners, while attendants were charged with sticking to a time schedule. As a result, customers were often treated like cargo. Customer satisfaction data was far from flattering. Was this because the pilots were

    To help remedy the situation, and as a competitive positioning move, United changed its slogan [and brand promise] from “The Main Line Airway” to “Fly The Friendly Skies.” The move was targeted, not at their customer, but at their employees. They wanted [needed] to change their culture, and they made it a priority to do so – from their mission statement to their advertising to the customer experience. And it worked.

    Cultural change, in United’s case, took a few years. Eventually, pilots began welcoming flyers onto the plane, inviting kids into the cockpit and handing out wings. Flight attendants started to smile and treat the customer with respect, instead of like cargo.

    We have a client, Ellis Medicine in Schenectady, NY, that is on a mission to change the patient experience. While it may be counter-intuitive to do so in this financial environment, they are making significant investments in changing the organization’s culture to be customer-centric — by training and aligning physicians and staff to the organization’s core values — and improving the way their customers access and consume healthcare. Jim Connolly, CEO of Ellis Medicine, has a vision and is leading the change. He believes his organizations’ survival, and the future of the healthcare system depends on it.

    Things may have not changed much in the past 40 years, but I suspect we are in for an interesting ride in the near future. There are organizations like Ellis Medicine, and my primary care physician, that are leading the way. Walmart just announced its intention to open primary care centers, and whether or not they are successful, a force like Walmart will have an impact. While I personally doubt Health Grades and other ratings will ever have meaningful impact on patient choice and behavior, word of mouth through Facebook, Yelp, and other social networks already do and their influence will continue to grow. The next generation healthcare consumer is more educated and has exponentially more access to information than ever before. Their voices will be heard.

    Will hospitals and physicians willingly evolve to help empower, activate and engage patients to be active participants in their health, or will something revolutionary happen to force them to do so? Only time will tell.

    • J says:

      The resonating words I heard from a first time visit with a physician yesterday were, “You’re not from here, are you.” From another physician, in another state, another year, “You don’t belong here.”

      How should I, a somewhat medically knowledgeable, assertive-yet-respectful person process that? What, pray, is so aberrant about my presentation that I not only feel reduced to a nothing, but have such things as a large growing thing on my neck dismissed. I feel like a failure at being a patient.

      I see other patients in the waiting room, hear them talking, and, while I do not know how they present to the physician once they are inside, overhearing their extreme stories, observing behavior that I find different, and I fool myself into thinking, “Well. If they can leave here satisfied – and they always seem to,” I stand a chance. But no. I am an alien.

      I’ve tried everything. Saying little, giving the big picture, pulling my forelock, redirecting the physician to the reason for my visit; catching myself when I see I’m pulling in other bad physician experiences and being in the present. Nothing works. I am alien.

      I have hypotheses about possible causal factors: being articulate, (for I once was, and usually damned for it, or having that interpreted as indicating a high degree of intelligence, which I do not possess), have direct experience in a health provision setting where everyone, people coming to be seen and staff, were on the same footing; and, one of my favorites: using the correct term for a body part or function.

      Alas, my life story has precluded my having attained the degree of whatever it is that I would need to have in order to avoid being seen as an aberrant anomaly. What am I supposed to do about that?

      It occurs to me now, that what made the clinic where I worked such a fine, human place, is that, on some level of awareness, we – people coming for care and staff – shared a culture of human-ness.

  8. JD Wright MD says:

    Mark, I have to agree with you when you say that the ‘usual suspects’ (not enough payment or time for patient visits) are not the main obstacles to substantive change. You mention the airline industry and positive changes that have occurred in that industry over the last 3-4 decades. I am reminded of an example of a fundamental change (or at least an attempt at change) in customer focus in that industry.
    I do not know the name of the airline, or the consulting firm, but many years ago the management of this airline was concerned because there were a lot of complaints from customers about flight attendants being unhelpful, unresponsive to their (the customers’) needs, or downright surly in some cases. The consultant concluded that many of the airline’s flight attendants were not primarily interested in the customers’ problems. For them (flight attendants) they had a job description and as long as they fulfilled the duties outlined, they didn’t really have to do anything else. In other words, being a flight attendant was for them a job, not a career or a calling. So the consultant suggested the following strategy in hiring new flight attendants. They advised the HR department to gather a group of prospective hires together in a room and then ask each of them individually to speak to the others assembled for a few minutes on some topic that genuinely interested them, a book they’d recently read, a new restaurant they had visited, a memorable person, anything they wanted to share with the group. The stated purpose of this exercise was to see how the speaker presented himself/herself to others, how well they spoke, etc. But the REAL purpose, the UN-stated purpose, was to observe those potential hires in the audience who were (supposed to be) listening to the speaker. Some were paying attention to the speaker while others were fidgeting in their chairs, talking to a neighbor, going through their appt book or check book, etc. People in this last category were not only not interested in what the speaker had to say but made no attempt to hide their lack of interest. The consultant advised that the airline should look to individuals in the first group as being more likely to be “other oriented” and to be naturally more solciitous of others (in this case, customers).
    [Mark, if you know of this 'case' and who was involved, please let me know. Maybe it was United...]

    Now look at how doctors are chosen, groomed, trained, etc. I entered medical school in 1972. Even then there was talk about getting medical students who were more “well rounded”, with course work, even majors, in things like English lit, philosophy, history. All fine of course as long as you had the daunting load of prerequisite course work in math, physics, chemistry and biology. (Things are different today, but how different?) Like it or not, western medicine is firmly grounded in science and mathematics, and no student will get far without a solid foundation in those areas. This “grooming” of sharp minded, deductive, medical scientists continues unabated for a grueling 8-12 years of medical training. Doctors are trained, as I was, to root out disease, and stamp it out whenever possible. Even for young doctors who majored in the humanities as undergraduates, as the rigorous application of science and deduction is pursued, the humanity sometimes dwindles. As one of my medical professors tried to point out, we were well trained in treating diseases, not so much in treating patients.
    Trying to retrofit doctors with compassion, empathy and, yes, patience is problematic and doesn’t work in most cases where those attributes aren’t already present, at least in some dormant state.
    So what is the answer? What is the solution to this mess? That’s why I’m in this thread, to find out. Whoever has the answer, please enter it now.

    • JD,

      There is one potential solution which i find very intriguing. Rather than try and train physicians to be better communicators, the focus rather is placed upon teaching patients to become better communicators. By teaching patients when and how to take a more active role during the medical interview, via questions and requests, research has shown that physicians become more patient-centered in their communication with patients (the gold standard). It is based upon social conversational norms which hold that “a question asked is a question answered.” In other words, a talkative patient prompts talkativeness in physicians.

      In fact this is the focus of my company’s research efforts. We hope to have a communication intervention out soon which we believe will stimulate improvements in physician communications by prompting improvements in how patients communicate.

      Stay tuned for more on this.

      Steve Wilkins

    • J says:

      I have part of the answer. Physicians do not need to be best buddies. The science is why we look to physicians and other medical pracitioners for care.

      One of the most unique elements of the clinic setting where I worked was the utilization of paraprofessionals, I was one of them, who might spend 45 minutes with someone before he or she saw the physician or a nurse practioner, not only getting a medical history, but listening, and having a dialogue. If need be, we might leave the facilty and continue the conversation over a cup of coffee. (And, perhaps, a cigarette). We did not talk about our own life, mind you. The idea was to be present for the, excuse the term, “client.”

      We, the “family health workers,” would then be the same person taking the person’s vital statistics, hematocrit, etc., that now relegated to medical assistants. We might then, or might not, according to the person’s wishes, assist the medical practitioners with the exam, and then meet with the person following the visit, to follow up on anything with which the person required assistance. Need I say that satisfaction level for all concerned was high, and medical outcomes, if you will, extremely good.

      Family health workers did not make much money; enough to survive. But that was okay.

      Contrast that with anything available today.

  9. Abby says:

    Stephen:

    At it’s most basic level, communication requires two willing parties. The point of many of these comments is that many doctors are unwilling to be partners in care. And, in the current culture of medicine, that unwillingness is acceptable. This needs to change.

    I would be very interested in your research. I have a graduate degree in communication from an ivy league school, and lots of personal experience communicating with doctors. Both my academic training and my experience lead me to believe that, for real improvement in communication, the change NEEDS to come from the medical community. In the current culture, doctors hold the power in the relationship, not patients.

    Some doctors will respond to effective communication from patients. Many will not. Unless we as patients have some power–not just good communication skills–we can invite doctors to the party, but we can’t make them dance.

  10. Abby says:

    Stephen:

    Thanks for offering to share your research. In particular, I was wondering how you measure successful communication.

  11. Anne Polta says:

    What is the real issue here? Is it about finding more time in a schedule that’s already crunched, or is it about creating an atmosphere that encourages mutual dialogue and respect for what the patient brings to the conversation?

    Ultimately I don’t think this is about time pressures or reimbursement. It’s about culture and mindset – viewing the patient as a guest (figuratively speaking) rather than a trespasser.

    There are a couple of links here, one to a British study and the other to an interview with a patient safety expert: http://bit.ly/sN6sR9. I completely agree with Steve: We can’t be better patients when we’re trying to function in a system that continues to be mostly doctor-centric. There needs to be some common ground where we can meet, without either party feeling judged or threatened.

  12. Abby says:

    This is precisely what I have been saying. The culture of medicine needs to change so that patients are viewed with respect. Patients are the reason that doctors have a job. They are the reason that hospitals exist.

    In the present culture of medicine, there is a distinct asymmetry in power between doctor and patient. I believe that this asymmetry leads doctors to believe that they can ignore or dismiss patients that make them uncomfortable by failing to respond to treatment as expected, by having complicated conditions, and by asking “too many” or the “wrong” sorts of questions. In my experience, a question asked is NOT a question answered.

    Here are some examples of questions asked that were not answered:

    “What medical conditions could cause a 36-year-old woman have repeated bouts of atrial fibrillation?”
    (No response; doctor leaves the room. Patient is in hospital bed, tethered to i.v. and cannot follow. Dr. Google says “Graves’ Disease,” and Dr. Google is correct. It took real-world doc a few more hospitalizations to get it right.)

    Patient says, “I have an underlying supraventricular tachycardia. A drug that controls the rhythm without controlling the rate will not work for me. Will this medicine control my heart rate?” (Response: “Just take the medicine that I gave you.” Result: readmittance to the hospital.)

    Patient asks to review with specialist chain of events that resulted in multiple hospitalizations. Result: Patient dismissed from practice.

    Patient diagnosed with multiple and severe problems undergoes days of testing with no opportunity to discuss results with specialist physician. Testing is positive for several severe problems that affect mobility and may require neurosurgery. Office schedules follow-up for 3 months hence. Patient asks for more timely appointment. Request refused. Patient asks for 5 minutes of doctor’s time by phone to discuss most pressing issues. Result: Patient dismissed from practice.

    Patient questions specialist’s treatment plan. Result: Patient dismissed from practice.

    Specialists have increasingly limited their role to testing, not treating patients. The practice of dismissing complicated and “difficult” patients is increasing. I know of many people with chronic diseases who have been “dumped” when they became troublesome, either by having complicated problems or by asking too many questions.

    In my state, doctors can fire patients for ANY reason. And it happens, ALL the time. Sometimes the patient gets a letter dismissing them. Sometimes it just becomes impossible to get a follow-up appointment, a vital prescription, an answer to a letter, and patients go elsewhere.

    I could go on and on, but the upshot is this: patients are on doctors’ turf, and communicate at the risk, with certain doctors and practices, of being fired and/or being labeled difficult. Other practices and individual physicians respect their patients and welcome their input. With these people real communication can occur. But, patients alone cannot carry the burden, and in many situations “communicating” needs to be done with so much tact and awareness of the consequences that patients are left swallowing their questions, their comments, and their complaints. To echo Anna, the culture of medicine needs to change so that it is safe for patients to communicate freely with their doctors.

    • Rebecca says:

      I hear what you all are saying and agree that it is a huge problem in the medical industry (though I believe this attitude extends far beyond doctors to all of the major players). That said please stop lumping all physicians together- there are tons of us that are terribly disillusioned by the system and the attitudes of many of our colleagues and who have been personally punished for repeatedly spending those extra few minutes to really engage a patient, or had protected patient phone or email communication time revoked. I realize that its much simpler to believe that all doctors are pompous a-holes who think we are better than our patients, and that it has nothing to do with the system we work in. I still argue that this position is incredibly naive. Yes there are bad doctors out there, I myself have seen and been horrified by most of what Abby describes. However there are also tons of great doctors fighting a crappy system that makes it very difficult to treat you like a real person, and certainly doesn’t reward us for it but rather puts us at the bottom of the barrel of physicians if we care about the whole picture of you as a person rather than one organ system, clinical care, and patient satisfaction rather than how many papers we have published, grand rounds presentations we give, or being a super sub expert in a rare or uber complicated version of a disease.

      Most of the public falls into this trap too- would you rather go to that fancy schmancy academic medical center down the street, or to a community hospital or network of independent clinics that survives only if you as a patient are happy and keep bringing your care there? What if I told you that the academic is spending maybe 20% of his time on patient care, and that the academic medical center is most concerned with the number of NIH dollars received so it can stay at the top of national rankings? I’m not saying that all people inside academic systems don’t care about patients because I’ve had a number of amazing mentors and some like Mayo or the Cleveland Clinic are first class in patient care and satisfaction too, but I was certainly brainwashed into thinking that all care outside of my top tier medical school hospital was second class, and have been astounded by the innovation and quality in some of the independent hospital systems that I am touring during residency interviews. The people and administrators in these institutions have quality patient care and satisfaction as their drivers- now unless it was a very rare or complicated disease I would never send a family member to an academic center for care, I would send them to a highly respected, integrated independent system that prides itself on evidence based medicine AND patient care. (Kaiser, Swedish, GroupHealth…) I’d also remind you all that an “expert” in the field is just somebody who has published a bunch on the subject or runs an academic department- there is no data out there to show what sort of clinical or patient satisfaction outcomes this person has as compared to anybody else. (Though happily this looks to be changing!!)

      • southern doc says:

        So well said, Rebecca.

        It’s not, in the vast majority of cases, doctors vs. patients. It’s all of us being stuck in a system that is increasingly designed for the sole purpose of maximizing profits. I have no solutions to offer, and am extremely discouraged by the direction in which we are headed.

      • Rebecca,

        Thanks for your feedback. It’s tough writing about this without sounding like I am “ragging” on someone…in most cases physicians. I really hate having to pint a finger at anyone since, as you say, there are so many good physicians and other care providers out there. And you are right, they are not all at academic facilities.

        But the fact remains that the vast majority of patients continue to experience physician-directed, paternalistic treatment from their personal physicians. Patient-centered communications is the exception rather than the rule when it comes to how docs talk with patients. The net loser is not the physician but the patient, at least in when it comes to outcomes.

        Lack of time and reimbursement are frequent retorts to mine and others’ calls for an improvement in the way physician talk with patients. But that same argument was made in the literature 30 years ago before managed care and more government and payer regulations. The problem lies with the traditional “medical interview” model which limits the opportunity to meaningful patient engagement (aka verbal input) to the 2nd step – patient’s reason for visit. It also lies with the plethora of incorrect assumptions physicians make about patients, i.e., their desire for X amount of health information, the interest in participating in collaborative decision making and so on. Even then patients are often interrupted as the busy physician jumps to their dx without letting the patient finish their opening statement.

        By no means are patient exempt from criticism. They are certainly not as engaged as one would hope. But they at least have a legitimate excuse when they feign ignorance as to what’s expected of them. That’s because no one has told them the rules have changed…that physicians are too busy to take care of all their health care needs. This is evidenced by the number of patients in newly “minted” Medical Homes that push back against being told what to do by their doc telling them “that’s your job not mine.”

        People like Terry Stein, MD at Permanente Medical Group and others (using the Four Habits Model) are making great strides in grafting patient-centered communication techniques to the traditional medical interview. But these folks are the exception…not the rule. Until I see the local primary care doc in at my local hospital employing more patient-centered techniques…I fear there is much work that needs to be done.

        Thanks for reading…

        Steve Wilkins

        • Rebecca says:

          While “doctor centered” sounds more sexy, it’s just not true. Tons of studies describe the decreasing job satisfaction and increasing stress levels of docs, especially in primary care. Many are leaving the field entirely. Hardly sounds like a system designed for us.

          Rather It’s a “acute diagnosis centered” patient encounter and interview, designed to elicit the pertinent information as efficiently as possible to make an accurate diagnosis and treatment plan. However there are absolutely skills taught that can make the interview more patient centered- agenda setting as a patient-doc team at the start of the visit, eliciting the patient’s perspective on the cause of their symptoms ( though this is usually met with “why are you asking me, youre the doctor” ), and motivational interviewing which means not using leading questions and creating space so the patient sets treatment priorities. However I still dont believe this within a 15 minute visit captures the collaboration and personal relationship most patients are seeking. Much of the patient confusion and sense of no control is also due to a highly fragmented system of care and lack of access to your own health data in a meaningful format.

          Given your insistence that more time would not help the matter- I do find it curious that most of the stories on this thread have a theme of the doctor not taking the time to explain, not getting enough information to make the right diagnosus, or not having access to the doctor to ask a follow up question.

  13. southern doc says:

    I’d say that visits are now “data processing” centered. Getting data into the EHR, getting the data needed for payment, the data for the pharmacy benefit manager, data for the pre-approval for tests, data for JCAH, data for Medicare Physician quality review, data for P4P, and on and on. The conversation is neither physician-centered nor patient-centered. It’s basically non-existent.

  14. JD Wright MD says:

    Where to start? So many insightful and sincere posts. And really such a sad commentary on our current, so called, healthcare system.
    Stephen, Rebecca, Anne, & Abby, you are correct in saying that the greater “blame” lies with physicians. When we speak of “relationships” we usually assume a general parity, but that’s far from the case in the typical doctor-patient relationship where the doctor basically holds all the cards. I think everyone acknowledges, too, that doctors are under a great deal of pressure, and not just financial, to behave the way they (we) do. To paraphrase someone (whoever said it): any system or organization is perfectly designed to end up with the results that it produces.
    I have a lot more to say but no time to do it now. I will add more later…

  15. Anne Polta says:

    To be clear, there are lots of great clinicians out there. I’ve met many of them and I know them to be hard-working, dedicated and caring.

    If the focus of this discussion is on doctors, perhaps it’s because this is the relationship that’s central for most patients and one that they view as important.

    I think a lot of this really does come down to medical culture – the attitudes, values and beliefs that have become so engrained that they’re not even visible to many clinicians, let alone questioned. For starters, look at the language that’s used – “problem list,” “chief complaint,” “doctor’s orders,” “the patient failed treatment” and so on – all tending to reinforce the patient’s role as subordinate/supplicant. Whether we realize it or not, perceptions shape the words we use, and the words we use are at least partially shaped by our perceptions and attitudes that the patient isn’t equal to the clinician.

    Here’s another example: information-sharing. Do you routinely share the specific details of test results with patients, or do you tell them “everything was normal” and then wait for them to ask for the details? How often do nurses take the patient’s vital signs and silently write down the results without sharing them? There is a difference between “we’ll share the information if the patient asks for it” vs. “we’ll routinely volunteer the information because the patient has a right to know” and it lies in the mindset that there’s a presumption from the get-go that the information will be shared.

    Don’t even get me started on the whole issue of adverse events and disclosure. I have unfortunate personal experience with this, and I’ve had to accept the fact that no one is ever going to tell me what really happened. How are patients supposed to be more involved and more responsible for their health when the playing field is so uneven?

    It doesn’t take more time to make some of these changes. You could develop a policy that patients will automatically receive complete test results. You could streamline your processes to make it easier for patients to obtain copies of their medical record. You could post signs at the reception desk or in the exam room, or slip a notice in with the bill, informing patients of what the process is to obtain their medical information. It’s about being more transparent and sending a message that it’s OK, and even encouraged, for patients to ask.

    Compared to 10 or 15 years ago, I think the system actually is getting better at this. We’re in a transition right now, and transitions often are difficult. It’s hard to have the conversation without clinicians getting defensive and patients getting frustrated.

    I don’t want to take on the doctor’s role; I’m not smart enough for that. I’d just like to see a partnership that’s a little more 70-30 or 60-40, instead of 95-5.

  16. [...] last week I was drawn into an online debate at Mind the Gap, a doctor-patient communication blog hosted by Steve [...]

  17. Frankie Li says:

    Maybe the use of Telemonitoring for the bio metrics (B/P; weight, Pulse Ox, Glucose monitoring, via Bluetooth technology via a web based dashboard process) would be more effective than the visit to the PCP office. Recently, we ran a pilot program with 20 patients who were labeled “non-compliant’ because they did not want to go into the PCP offices. We placed them on Telemonitoring for 90 days and the results were great. They were not non-complaint, just did not want to be tied to the PCP/SPC offices. With the portable equipment that was easy to carry with them, they were mobile and able to be empowered and actively making decisions on how they managed their healthcare issues. It reduced admissions and ER utilization on these patients. It also allowed them to be as mobile as they wished, while allowing the PCP/SPC or even their loved ones access to their biometric information and having those providers and Case Managers to intervene in the moment, when the parameters set were out of bounds. Is this the answer to the above problem, alone, NO, it will need to be the holistic care of the patients, that includes this type of technology, along with healthcare providers, patient, and their loved ones. Thoughts?

  18. Frankie — brilliant comment thank you! I just interviewed a 27 year old (Isaiah M.) Iraq Army Veteran who would be labeled dismissively as “non-compliant” – but…. the nearest VA hospital he’s assigned to is an hour from his home. And he lives below poverty level and doesn’t have a car…. Isaiah has never, ever felt like his care providers understood him, or respected him for that matter. Having waded through dead bodies at the age of 19, and currently on disability for back pain, his issues are complex. What he craves, and respondes to most positively to, is engaged, empathic, personal attention.

    I would love to see Telehealth monitoring employed in his situation, document his journey on video, and share it via the web. Such a project could be invaluable to educate, equip, and motivate Providers to use mHealth innovations on underserved populations.

    Would you be able to share your research with me? I’m going to be investigating our local area to see if any such solutions are being employed yet… and if not, will set about advocating to the best of my ability. THank you!

  19. Gary Sweeten says:

    Could I reframe the communication issue from Doctor to Patient to Medical System to Patient System. Most of the important data does not require the Physician to be the communicator. Nor does the Patient need to be the key communicator on his or her side. The Physician is the best trained and highest paid and most time and clinically focused member of the health care team. Having the Patient and his or her support system fill put a simple form before entering the office can be read and many questions answered before the Physician enters. The Physician must, of course, do their required actions. My Dentist does this as does my Internist who can more effectively deal with clinical issues. I had in in patient psychiatric unit for seven years. The patient could bring their parents, friends and pastor who would support the patient in after care.

    • Gary,

      You could re-frame the scenario..but it wouldn’t be accurate. Keep in mind that people have established, trusting relationships with their physicians…not so much with their physician’s medical assistant or office nurse. As with the inpatient setting, the more people that get involved the more “patient hand offs” the great the chance for communication failures and the the greater the chance for medical errors. Same thing with the physician’s office.

      As long as the patient is asked and is willing to talk with the MA or nurse rather than the doctor that would be fine. But that’s not what you are suggesting. You are suggesting the “we know what’s best for you” approach where the clinical staff just do it and the patient is forced to accept it. Some call this approach team care. There’s nothing very patient-centered about that approach….and patient-centeredness is a goal of health delivery reform.

      Steve Wilkins

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