The Traditional Patient “Sick Role” Is A Major Barrier To High Quality Health Care

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Each of us wears many different “hats” throughout the course of the day.  We are an employee, a wife, a father, a club member, a consumer and so on.   It comes as no surprise that our thinking, what we say, and how we say it at any particular time coincides with the hat we are wearing at that moment.   The thing about these “hats” or roles is that they come with their own set of social conventions, particularly when it comes to how we communicate.   When I was a kid for example “children were to be seen and not heard” when out in public.

So it is when we put on our patient hat – something we all do from time to time, particularly as we get older.

Unfortunately few of the roles we play come with a book of instructions.  Rather we learn them from experience or by watching others.

sick roleThink back to your first visits to the doctor – when your Mom took you to the pediatrician.  If your experiences were like mine you learned very early on that the doctor did all the talking (aka physician-directed style of communication). That’s because the doctor’s role was that of “respected expert” and my Mom’s role (and by default mine) was to play the sick role.   Much was required or expected of the person playing “sick role”…you just were there to listen and then do as told.  My Mom never was one to be passive or  quiet in most social situations but when it came to being a patient (surrogate) or a real patient in later years…she would have won an Academy Award for playing the sick role to perfection.

Believe it or not, when I have to put my patient hat on…I am no different.  In another post, I described waiting 2 hours to see a new Retinal Surgeon who was said to be very good.   The longer I waited the fewer the questions I decided to ask him…he appear too busy to spend time with little ole me answering my questions.   I couldn’t believe how easily I slipped into the sick role!  I suspect that, contrary to all the talk in the literature about how empowered everyone is…we patients basically all behave the same way when the exam room door closes.

This point was driven home for me in a recent Health Affairs article that talked about “Patient’s Fear of Being Labeled Difficult.”  The basis for the article was a series of patient focus groups conducted in the San Francisco Bay Area – the heart of Silicon Valley and all things involving digital health.   One finding stuck me – that most participants in the study talked about how they actively tried to avoid challenging their physicians during office visits.   

Deference to authority instead of genuine partnership appeared to be the participants’ mode of working.

Mind you the participants in the research were “wealthy, highly educated people from an affluent suburb in California, generally thought to be in a position of considerable social privilege and therefore more likely than others to be able to assert themselves.”  These patients were recruited from Palo Alto Medical Foundation physician practices … one of the most wired health populations in the US!

But.. But.. Everyone Is Supposed To Be Empowered and Activated?  

Baloney.  The patients in the study were socialized into the same sick role as the rest of us.  Deference and passivity, at least while in the exam room with the physician, are dead giveaway signs of sick role behavior.   Too be sure these people did go online after they left the doctor’s office to do what they should have done with their doctor – ask important questions.   Did you know that during the average primary care office visit patients ask very few “important” questions?

The Finding Should Be Concerning To All Of Us

Talking (and listening) is how physicians diagnose and treat patients.  If patients are deferential (due to fear , concern about taking up too much time, etc.) to  their physician to the point that they don’t share valuable information, don’t ask challenging questions and don’t engage in collaborative decision-making  then something is very wrong.   The net result is sub-optimal outcomes, medical errors, preventable ER visits and hospital readmits and poor patient experiences.

The Take Away

The first step is for providers to recognize the scope of the problem and the need to fix it.  The second step is for providers to examine their own attitudes and skills with respect to helping patients break out of the sick role into a more collaborative role.  Third, providers and their hospital partners need to acquire the tools, training, and resources needed to help patients as well as themselves design and adapt to their new hats, roles, and social conventions.

That’s What I Think…What’s Your Opinion?

Source:

Frosch, D. et al.   Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Health Affairs.  No. 5 (2012): 10301038

17 Comments

  1. This isn’t a problem of people stuck in habitual roles. This is an absolutely fair assessment of how delicate and intimidating this exchange is.

    All those assertive, well-to-do people aren’t dumb. They know that you never, ever want to upset your doctor. With how much power my doctor holds—over whether or not I can work, whether or not I have a minimum quality of life, over whether or not I suffer—of COURSE I’m going to behave as meekly and mildly as possible in their presence. If I piss off my doctor, I’m SCREWED. It’s a ton of work to even *get* an appointment with a doctor,,, so I’m not going to do anything to threaten that relationship.

    If a doctor decides they don’t want to do something, what recourse do I have? Spend another 6 months suffering while you try to get into the next specialist? Not an option in many cases. When we need help with health, we need it now. And it’s surprising that strong people are suddenly sheepish? I don’t think so.

    • Recently I needed to see a surgical specialist. At my first visit I had to wait 2 hours to be seen. This guy was “the best” in town. Like most people, I had my list of questions about the procedure, the risks, recovery time, etc. The longer I waited the more questions, the more I found myself unconsciously paring down my list of questions out of deference to the surgeon’s time. I was amazed at how natural that behavior came to me!

      That is what I am talking about with respect to assuming the sick role. That the same way with a lot of other people I know as well.

      There’s no denying that one can be “forced” accept the subservient role against their better judgement…but for many people its about pleasing or being pleasing to the clinician.

      Thanks for your kind words on you blog http://makethislookawesome.blogspot.com/p/resources.html about Mind the Gap!

      Steve Wilkins

  2. Carolyn Thomas says:

    Hi Stephen – you are right on the money here (she says quietly, as if she hadn’t just written about throwing a complete hissy-fit as a little girl when the family doctor decided she needed an injection during a housecall: http://myheartsisters.org/2012/09/16/my-lowly-beginnings-as-an-empowered-patient/ !!)

    I recently changed family doctors after a long (35+ year) relationship. I’d been wanting to make this change for a long time for a number of good reasons, yet I repeatedly caved (for years!) every time I even thought about having to take action – never mind TELL my family doc I was leaving her.

    This is NOT a relationship of equals, no matter how smart, informed, or assertive we may believe we are as patients.

    On the other hand, I have absolutely zero issue with telling my mechanic exactly what I think of his inability to stop my car horn from sounding every time I downshift, and when he “fixes” it but it keeps honking, I do not hesitate to call back and demand satisfaction. That’s because ours is a relationship of true equals, and a relationship of commerce.

    Patients have helped to reinforce our position of deference to physicians by reinforcing our willingness “to please and be pleasing”, as you so astutely describe it. Doctors have come to expect this deference – for whatever reason including those offered above. I suspect that’s why some doctors are so insulted when their patients go ‘over their heads’ by consulting Dr. Google . . .

  3. As a retired physician I too have had to “go to the doctor”. I found your discussion interesting. At my last doctor visit I could have easily taken control of the visit since I know the problems, I know the symptoms, I know the drugs, and I know what the doctor should do. But, like you, I just let the visit unfold.
    I know the doctor has an agenda. That agenda will be followed with as much interpersonal skill as the doctor can muster — 1) figure out why the patient is in there 2) ask enough questions to make a diagnosis 3) explain enough so the patient seems to understand the diagnosis and treatment 4) take some action (prescription, tests, surgery, appointment etc) 5) get done in time for the next scheduled visit (but, if you are behind, skip steps 1,2 and 3)
    So, I was a good patient and told the doctor why I was there, answered the questions quickly, knew the phone number for my pharmacy, we chatted momentarily, and I went home satisfied I did not step out of line. In the end, I just did what other patients do (plus write a blog about health care).
    I have one caveat: if you need something or have a question or need reassurance then say so at the start of the visit to fit into agenda item #1.

  4. Mark says:

    I’m sitting in an exam room naked, with a disposable towel draped over my lap waiting for the mystical doctor to come in, he shows up, I either don’t know him or I have not seen him in a year, he grew a beard, hmmm, but I’m naked and my bare ass is sitting on a piece of crinkly paper, so let’s forget about the beard.

    Of course I am going to get the heck out of there as fast as I can. I’m not able to think clearly and critically regarding new info he may be telling me anyway while I’m trying to hold that disposable blanket from sliding off my lap and exposing my pride..

    Of course I am going to put on my clothes and go home and do some researched and learn what I can from 5 other professional opinions and maybe thousands of other “patients like me”, then maybe give the docs office a call back and explain why I am not going to take this new magical drug.

  5. Frankie Li says:

    This is a time for people to stop being passive and to speak up and ask questions. I think most od my patients would rather not have to go into a doctors office to have them “review” their blood sugars after each 30 days. With technology available(Cytta Connect) to let these patients be able to manage their own DM electronically and not have to sit in an office for the expert to tell them if it is ok after the fact, why don/t patient stand up and say “no More” patient need to take the wheel and the providers need s to help them navigate, not just push them down the road to better health care.

  6. Anne Polta says:

    I think there needs to be a certain amount of give and take in the dr.-patient relationship. Patients need to be respectful of the doctor’s time and expertise, not because we’re expected to be passive but because it’s just common courtesy.

    The system and the whole culture surrounding health care seems designed to keep patients subservient, though, and this is a real problem that many in health care seem unable or unwilling to acknowledge. I’ve been frustrated many, many times by the assumption, from one clinician in particular, that if there’s confusion about an rx or labs or what have you, it must be my fault because I’m a layperson and gosh, everyone knows laypeople are hopelessly ignorant and confused. In fact I was right *every single time* and it was the clinician who was misinformed. Like anyone else, I want safe, competent care, but it’s really hard to advocate for this when the built-in attitude is that patients don’t know anything, ergo if there’s a misunderstanding, the blame belongs to the patient. It has the effect of slapping down the patient before the facts are even known, and putting the patient in the position of constantly having to be conciliatory and on the defensive.

    To me, one of the most concerning things about the study you cite was the belief by many patients that complaining about their care would result in retaliation in the form of substandard care. In what world do health care professionals get even with their patients by providing lower-quality care? If I were a clinician, I think I would be asking myself some hard questions about why patients would think this and what I might have done to reinforce it.

  7. j551wright says:

    Stephen, first of all, I apologize for the length of my reply, but I think it’s worth reading.

    You’ve once again selected another very important topic. Among other things, it’s important because, quite simply, effective healthcare depends on good communication. This is something that is often lacking in doctor-patient interactions.

    The replies to your post are obviously well thought out and thought provoking. Even a cause for discomfort on my part (I am a doctor, a hospitalist), not because what some of them say about physicians is not true, but because it IS.

    There’s enough food for thought here to write a book, but I’m only going to give a bit of my own insight into this huge problem. We talk about such things as “the doctor-patient relationship” and “the difficult patient” or (I love this one) “patient centered care” as if there existed uniformly agreed upon definitions for these. Of course there aren’t.

    While it’s difficult to come up with a concise definition of what makes a difficult patient, it may be easier to describe an ideal patient. An ideal patient is one who is pleasant, respectful (even admiring), compliant (does what they’re told), punctual, reliable, has an easily defined problem that the doctor can treat/manage (preferably cure). Further, an encounter with an ideal patient doesn’t take much time. It also helps if this patient is full of praise for the doctor, remarking on how busy the physician is and frequently expressing the hope that he/she (the patient) is not taking up too much of the doctor’s time. {It’s almost as if the patient is there in service to the doctor, rather than the other way around.}

    As I think about it, I do have a picture in my mind of a “difficult patient,” a picture which is probably a little different for each doctor. Also, a patient one doctor finds “difficult” may have a perfectly fine and productive visit with another physician (which begs the question: who is the difficult party here?). So while I think there are some difficult patients (just like there are difficult physicians), mostly there are difficult interactions (between doctors and pts). More often than not, in my opinion, the interactions becomes difficult when the patient feels disrespected, ignored, not listened to, patronized, or when they feel their concerns/complaints are trivialized or feel blamed for the problem they came in with. Unless the patient in this situation is an “ideal” one, they will often react and then become, in the eyes of the physician, a difficult one.

    The interaction can also become difficult if the patient disrespects the doctor, dismisses the doctor’s advice/opinion, blames the doctor or others for their problem, refuses to accept appropriate responsibility for their problem or continues to complain about a condition for which they have not followed medical advice.
    I still think there are very few truly difficult patients, although many doctors would say “Yeah, but they’re all in my practice!”

    But in the typical doctor-patient interaction who’s providing a service to whom? Obviously, the doctor should be in a service mindset and be ever mindful that, as one of my professors used to point out, the physician is “treating a patient, not a disease.”

    • Thanks for you comments.

      It amazes me at how so many providers (and now they hospital “partners”) as so oblivious to the challenges that poor physician-patient communication pose to quality health care. If physicians can’t effectively communicate they can properly diagnose and treat patients. It’s no wonder that most medical malpractice suits these days are linked to the quality of the providers communication skills.

      Steve Wilkins

  8. Stephen, This is such an important topic. I remember a study from more than a decade ago that looked at what type of patients doctors found least desirable. Right behind the dirty, smelly patients came the patients who asked lots of questions. Like you said, we learn at a young age to be the submissive one during the patient/physician encounter in order to avoid being judged as difficult. I like the suggestion made by QualityHealthcareplease where he suggests that if you have a question you make it known at the outset of the appointment. That’s a good way to take an active and assertive role.

    • Kristin,

      Go back and look at the history of “campaigns” like “Ask 3″ designed to get patients to ask their physicians questions about their care. They simply don’t work. Why? Presumably for the reasons addressed in my post. Remember that we all have had previous health care experiences with providers which have reinforced the one-sided nature of the physician-patient relationship. While it seems logical to tell patients to ask questions… people know that it is often a thankless task. There’s another way I believe to accomplish this however…stay tuned.

      Thanks for your thoughts!

      Steve Wilkins

  9. This is an excellent forum to educate patients–because at one time or another, we are all reduced to “nakedness” at the mercy of our health care provider. But I’d like to offer another perspective: how well does your doctor feel in the moment he’s meeting with you?

    Physicians and helping professionals are the worst at their own self-care management (body, mind & spirit). For various reasons they neglect their own health needs and like anyone of us, how does that affect your transactions with others?

    I am a life and wellness coach specializing in self-care for professionals. I am advocating for providers to take better care of themselves so that they will be in a better position to treat their patients with greater care, respect and compassion. If there are any doctors reading these posts I would like to say: Physician, please don’t try and heal thyself.
    Thanks, Steve, for providing an opportunity for me to share my thoughts!

    tracy@creatingnewwaves.com
    swimmingtowardbethlehem.blogspot.com

  10. Enter the advocate: a friend, partner, relative or even professional who has less “skin in the game.” By improving provider communication, access to information & material resources an advocate can help improve your medical experience. Step 1: Prep together as best you can for interactions with providers. Step 2: Let your advocate help set the agenda and “run the meeting” with the provider. Step 3: Follow up liberally with provider and other resources, e.g., pharmacist, therapists.

  11. The experiences represented here have not been mine in my 30+ years as a physician/healer @PrimeCare. Excuses and drama have no place in the modern flat-world exam room. If patients are not working with me in a position of mutual trust/respect, I tell them to ask, “Why?” and change it or and upgrade!

  12. Facebook1938 says:

    The very way you write these articles and the suggested answers are strong indicators that the Patient is Sick and the Doctor is Sovereign. You do this by placing all the emphasis on what the Doctor does or does not do with the six minutes heshe has with the sick person. The focus must be on the system in which the Patient interacts, reacts, shares and gets information. Treatment must focus on diagnosing and treating the Patient’s support system not just his/her disease. The best plan is to insist that the Patient come to the medical system with the family or friends Support there to go over the assessment in advance of the Doctor showing up in the room. The health care team helps Patients write down symptoms and questions in advance. I always take my wife to appointments and write down our questions in advance. The nurse or PA looks them over and discusses our concerns. The Doc then can get the insights from the health care team and the Patient and the family system.

    This will be best for everyone concerned.

    I am developing a system to do this right now.

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