Patients need to overcome the fear of asking questions

Today’s healthcare consumers are increasingly asked to take a more participatory role in their care. For many this is a daunting task – even if the patient desires being in the driver’s seat. There are a myriad of issues undermining patient-physician communication – such as time constraints, lack of comfort with the subject matter, lack of shared language, or even fear – that can make the task of being an empowered patient akin to trying to assemble a puzzle with several pieces missing.

In the recent New York Times article “Afraid to Speak Up at the Doctor’s Office”, Pauline Chen, MD, suggests that patients often feel “trapped” in communication patterns with their physicians. This phenomenon is not unique to patient and physician. As a graduate student, I taught a freshman-level communication class in which we called these ongoing communication challenges URPs – or Undesirable Repetitive Patterns. Addressing and correcting the common patient/physician URPs are important factors to improving communication.

In my professional experience, I consistently encounter a specific example of the classic “he said/she said” scenario with regard to patient/physician relations. On the patient side, I have never conducted a patient focus group when at least one did not say something to the effect of:

“It feels like my doctor doesn’t listen to me. All s/he wants to do is write me a prescription for something.”

Conversely, in focus groups with physicians, it is rare that I do not hear one say:

“Patients really don’t seem to be listening. All they want is for me to write them a prescription that they don’t really need.”

Although, the sentiments are simplified a bit here, the intent, and underlying issue, does not change. In this case, the lack of a shared perspective is leading to more medications begin prescribed than maybe anybody really wants or needs. Both patients and physicians have a role to play to help prevent this.

From my own experience as a patient, I know that trying to achieve a common ground can take a lot of, well, work.  Case in point: I am now one year out from my own cancer diagnosis and I still don’t really know what my care plan is. I know the plan exists, because several providers have made reference to it. The important parts seem to get dribbled out in bits and pieces in various doctor appointments, so I’ve pieced together the big picture, but I don’t have anything in writing. As a result, I don’t really have a sense of cohesiveness, or a nuanced understanding of what I might experience along the way, or even what’s expected of me as a patient.

I know better than this. I’ve asked about it a couple of times, but know that I should be pushing harder. But, that would probably require multiple phone calls and the navigation of umpteen voice mail systems and, quite frankly, it’s easier to just do a little internet research on a rainy Saturday to find out whether such-and-so is a medication side effect or if I should call the doctor about a new symptom I’m having or just deal with it. I’m soon to arrive at a key decision point in my care, and although I’ll be actively involved in making a choice, I’m not sure it could truly be called “shared decision making.” My choice will be made based on possibly incomplete information received in disparate office visits and data I’ve culled from various sources that may or may not be applicable to me. What’s really being “shared” here?  On the patient side, there is value in gathering information from multiple sources. Physicians continually glean knowledge from new research or the experience of their own patients.  These asynchronous discussions need to be linked to ensure a collaborative process.

How can we break out of these URPs at the physician’s office? Not unlike the patient, the doctor will often favor the path of least resistance. When I probe further about patients asking for unnecessary prescriptions, physicians describe it as the challenge of “getting to ‘no’.” For a busy physician, it is more efficient to write the prescription than it is to help the patient understand why s/he doesn’t need it.

Communication is always a two-way street. For patients, this might mean working to overcome the fear of asking questions and being persistent about getting the answers when necessary. For physicians, this might mean identifying a mechanism for patients to ask questions and acquire the information they need (which may translate to leveraging other members of the care team). We stay in URPs because it’s what we know. It’s always going to be easier to do it the way we’ve always done it. In an environment where both physician and patients can commit to doing it differently, new and beneficial communication patterns can emerge.

Beth Austin is a patient and consumer engagement advocate who blogs at Crescendo Consulting Group blog

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  • buzzkillersmith

    Too many patients and not enough time for each one. If this problem is not solved, and I do not expect it will be, the prognosis for much communication is grave. America is unwilling to provide primary care the resources that are required to do the job that America wants us to do.
    I’m not much of a fan of stuff like the PCMH, mainly because I think that the screws will be tightened on us yet again if it comes to be, the propaganda at least says that someone else like a mid-level or MA will do the the communicatin’ for us. Well, I’m not buying that particular bridge, but that’s what they say. I’m not sure how old you are, Beth, but as an old guy I can tell you it has always been like this, people have always complained about their docs. And yet life expectancy continues to rise….

  • Jackie Swenson

    Being a minority can be a health hazard in this country. Even with an advanced degree, I was not viewed as a ‘competent’ patient. Even after two life-threatening illnesses and three major surgeries, my doctor stll thought that I was hypochondriac when I brought up preventive measures/testings/prophylactic procedures.
    I’m fortunate to be alive and well because I’ve had some training in medical research. And I’m fortunate to have had some very nice doctor friends who had acted as my advocate, offered to be my 2nd opinion doctors.
    Yes, I’ve learned to do my own research and not to be intimidated by medical professionals. And I’ve learned to be tactful in bringing up my request. Doctors are my firends. I know their good intention and trust their professional judgement. I just need to be talking like an ‘adult’ when presenting my case…

  • Peggy Zuckerman

    This is a pretty ghastly situation when someone as savvy as Beth is, and with cancer, has no clear statement as to the treatment plan for her cancer. No clear statement of the plan means that neither Beth nor her providers can assess her progress, determine if the treatment is harmful, if the diagnosis is correct and so on. No one remodels a bathroom without a plan, visible to all the parties involved, and yet we handle our health problems in a way certain to be inefficient at best, and ineffective at worst.

    Since Beth is indeed experienced at this and holds herself out as patient advocate, how in the world can we expect the newly diagnosed, the patient in a traumatic situation or the illiterate–and we are illiterate medically!–make sense of our health challenges? The obligation of the medical world is to provide the needed information, the health plan, and to educate the patient how best to use that information to make their decisions.

  • Samantha

    Dr Kevin my name is Samantha. I’m looking for answers to my problems, that are beginning to make me fearful of doctors all together. I had my L5S1 shaved down October of last year due to a bulging disc I was diagnosed with at age 13. Never bothered me until last year. In the last year I’ve had quite a few episodes of muscle spasms due to the combination of surgery and my job as a CNA (at least that’s my opinion). The end of august 2012 my dad had a heart attack and was very close to death. I was very stressed out on my drive home from the hospital but felt ok…I laid down and immediately felt the awful pain I felt before the surgery. To try to cut the story down Ive ended up with an MRI of literally my entire body bc the doctors wouldn’t listen to me, and kept pawning me off on one another. I’ve had 2 cortisone injections 6 weeks of physical therapy and have seen a chiropractor, rheumatologist, PCP, neurologist, and 2 neurosurgeons. Every single one.of them have told me different diagnosis. I have no relleif a lot of medical bills and to many narcotics to count. I’m trying to push thru bc I have a 3 year old and have had already had to leave my job bc of the pain. It’s terrible pain!! Nothing touches it I do have good days but they’re getting fewer and further between. I want my life back! I have degenerate disc diseases at 25 years old with my 3 lowest discs all bulging, this awful pain in my legs too. What is wrong with me?? Do I need surgery, do I have more options? I can’t take the pain much longer it’s tooken over my life and family please help me?!???

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