When you fear being labelled a “difficult” patient

9 Dec

by Carolyn Thomas  @HeartSisters

We arrive early for our doctor’s appointment. We wait patiently. We sit across from the doctor, and we nod and smile politely during our visit. We pick up the prescription for our meds and then we walk out the door to make room for the next patient waiting.

And sometimes we do this even when the discussion about our health care leaves us with unspoken concerns or unanswered questions. Most patients know what this feels like, so it’s reassuring to learn that academics are actually studying it: our fear of being labelled a “difficult patient”

Research published in the journal Health Affairs earlier this year summed this up nicely in their study abstract:*

“Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care.

“In a series of six focus group sessions in the San Francisco Bay Area, we found that participants voiced a strong desire to engage in shared decision-making about treatment options with their physicians. However, several obstacles inhibit those discussions, including:

  • even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations
  • physicians can be authoritarian
  • the fear of being categorized as “difficult” prevents patients from participating more fully in their own health care.

Keep in mind that the patients recruited for this study were from Palo Alto Medical Foundation physician practices, described by the researchers as “wealthy, highly educated people from a desirable 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” – and as residents of Silicon Valley, they also represented one of the most wired health populations on the planet.  Most participants in this study were over 50, lived in affluent areas and had either attended or completed graduate school.

Yet here’s how researchers described the realities of patients like this:

“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.”

I’ve been to Palo Alto when I attended Stanford University’s Medicine X conference a few months ago, my heart sisters, and I have to say that if these “wealthy, highly educated people” feel compelled to resort to “deference to authority”, do the rest of us dull-witted patients have a hope in hell of not doing so, too?

As Dr. Dominick Frosch, lead author of the Health Affairs report, told The New York Times:

“Many physicians say they are already doing shared decision-making, but patients still aren’t perceiving the relationship as a partnership. People experience a different sense of self in the doctor-patient interaction. The clinical context creates a reluctance to be more assertive.”

“And it’s hard to think that people from more disadvantaged backgrounds would find it any easier to question doctors.”

We are right to worry about appearing difficult to our doctors. 

A number of studies, including one by Dr. Perry An reported in the Archives of Internal Medicine, have revealed that one of every six outpatient visits is described as “difficult” by physicians.** 

Difficult encounters are more likely to occur with patients who:

  • have a mental disorder
  • present with more than five somatic symptoms
  • exhibit high use of health services
  • possess a list of complaints
  • have threatening and abrasive personalities

Some doctors studied reported, in fact, that they secretly hope that their challenging patients will not return, and considered these difficult encounters to be “time-consuming as well as both personally and professionally unsatisfying.’

Dr. J.E. Groves, in a telling study he called “Taking Care of the Hateful Patient” published in the New England Journal of Medicine back in 1978, described four basic types of difficult (er, “hateful“) patients:

  • 1.  the demander
  • 2.  the manipulator
  • 3.  the denier
  • 4.  the self-destroyer

(One wonders how Groves et al would possibly tolerate the tech-savvy medical-Googling empowered patient movement three and a half decades later?)

Does it sound disrespectful (and perhaps naïve) for doctors to label a patient as “difficult”? Make no mistake – there are indeed those people for whom “difficult” would be a charitably descriptive statement of fact;  we’ve all met these types in our travels.

But my concern is for those of us who are generally reasonable and curious and not-difficult, the people who simply want to question our doctors (but may hesitate) or to request specific treatment options (but may hesitate) or to be taken seriously when we are feeling ill and desperate (but may lose hope of doing so) because of our own reluctance to be unfairly labelled.

According to Dr. Stephen Balt, Editor-In-Chief of The Carlat Psychiatry Report:

“Doctors are people too, and it would be even more naïve to think that doctors don’t have their own reactions to (and opinions of) the patients they treat. Let’s face it: doctors simply don’t like dealing with some patients.

“But I would posit that there’s no such thing as a difficult patient.  To be sure, some patients present with difficult problems, challenging histories, poor interpersonal skills, and needs that simply can’t be met with the interventions available to the physician. 

“But every patient suffers in his or her own way.  Doctors bring their own baggage to the interaction, too, in the form of strong opinions, personal biases, lack of knowledge, or – conversely – the perception that we know what’s going on, when in reality we do not.”

Over the past three years, I’ve heard from many heart attack survivors who have shared with me horror stories of being treated as “difficult” patients because they challenged a doctor’s dismissal of their cardiac symptoms when they knew that something felt very, very wrong to them. 

I was one of them. Four years ago, I asked the E.R. doctor (who had just misdiagnosed my textbook heart attack symptoms as acid reflux) about this alarming pain radiating down my left arm. This is what I was later told by his E.R. nurse in no uncertain terms (and no, I am not making this up):

“You’ll have to stop questioning the doctor. He’s a very good doctor, and he does not like to be questioned.”

Her stern warning to me immediately left no doubt whatsoever in my mind that I was, in fact, being perceived as a “difficult” patient because I had the temerity to ask questions – yes, even in mid-heart attack. By then, having been quite confidently misdiagnosed a few minutes earlier by a person with the letters M.D. after his name, I was already feeling embarrassed for having made such a fuss over nothing, and for wasting his very valuable time in Emerg while all those truly sick people were lined up in the waiting room.

Nobody had to tell me twice to shut up and go home.

Patients like me can be frustrating to physicians. Doctors may not be able to  solve a diagnostic mystery or find a treatment option that works for this type of patient, and they may dread encountering these patients again due to that frustration.

Patients like me also walk a razor-sharp tightrope. We risk being labelled as “difficult” if we persist, yet we risk being dead if we don’t. And we are justifiably afraid of being sent away in case something is actually very wrong.

Worse, doctors may even slap the term “anxious female” on the patient’s chart, virtually guaranteeing subsequent misdiagnoses and dismissals during future visits.

As Dr. Caroline Forrest recently reported in the September 2012 issue of the journal, Primary Health Care:

“When patients are branded as difficult or demanding by health care professionals, it can in turn have a detrimental effect on the treatment a patient receives.”

No wonder many of us resort to “deference to authority” like those nice, well-behaved Palo Alto patients like to do.

And no wonder the Palo Alto study author Dr. Frosch made this demand in The New York Times:

“We urgently need support of shared decision-making that is more than just rhetoric. It may take a little longer to talk through decisions and disagreements, but if we empower patients to make informed choices, we will all do much better in the long run.”

.

See also:

♥   This post was also published by Prepared Patient Forum on December 10, 2012  ♥

.

* Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Dominick L. Frosch et al. doi: 10.1377/hlthaff.2011.0576 Health Affairs. May 2012 vol. 31 no. 5 1030-1038

** Burden of Difficult Encounters in Primary Care: Data From the Minimizing Error, Maximizing Outcomes Study. Perry G. An et al.  Arch Intern Med. February 2009;169(4):410-414

Q:  Have you ever been labelled as a “difficult” patient?

23 Responses to “When you fear being labelled a “difficult” patient”

  1. Butterflywings December 10, 2012 at 4:28 pm #

    Well said, and interesting blog, as a feminist :-)
    This: ‘Note that I’m not talking about the patients with mental health issues who may be emotionally or physically abusive towards their physicians.’ stood out to me – I have physical and mental health issues. Mental health problems and being abusive aren’t linked. It’s a damaging stereotype, and actually allows people to get away with bad behaviour by excusing themselves for it on the grounds of ‘I’m mentally ill’ - whereas many of us with mental health problems, like myself, are harder on ourselves and more likely to beat ourselves up for minor or imagined ‘offences’ than those without.

    I think there are just people who are abusive arseholes, mental health problem or not.

    Yes those of us with mental health problems are sometimes challenging; mental health staff are trained to deal with that. All the crap women get, as you rightly describe, not being taken seriously and being expected to be ‘nice’ when very ill and desperate… imagine being in a mental health crisis and being treated this way. It is even harder to come across as what the doc deems to be acceptably nice, reasonable, ‘compliant’ etc when you are in mental distress. And it’s almost impossible to have a physical health complaint taken seriously if you have a mental health diagnosis/es.

    I had a GP who put everything down to anxiety, as you rightly address in the post on that subject, the difference being that I *do* have anxiety…I also know what the symptoms of that are (despite being a mere ‘anxious female’!)

    The underlying sexism biasing the way women are perceived as patients is the same in mental health and the need to address the power imbalance in the doctor/patient interaction if anything, even more so. I agree that people shouldn’t be diagnosed as having a mental health issue if they don’t have one, but instead have a physical issue – but please don’t sound as if you’re dismissing people with mental illnesses.

    Like this

    • Carolyn Thomas December 10, 2012 at 6:13 pm #

      Hello Butterflywings and thanks so much for your thoughtful response to this article. I’m afraid you are right – when I re-read this post, it does sound like I’m equating mental health issues with abusive/violent behaviour. Ooops. As a person who has suffered from severe depression following my heart attack, anything that reads like I’m “dismissing” people with mental illnesses would certainly never be my intention and I do apologize for that clear lapse in judgement! I wrote that line originally to differentiate between the type of “difficult” patient discussed in the medical literature (those with diagnosed personality disorders, “difficult” for health care providers to treat, particularly when they’re not trained mental health professionals) and the sick person who may be perceived as “difficult” but with no mental health diagnoses. I’ve edited my original to delete that “abusive/violent” reference, thanks to your feedback.

      Like this

  2. CarlyRM December 9, 2012 at 7:06 pm #

    I’m definitely a difficult patient! But I have a difficult disease (Crohn’s) that requires not only a specialist (Gastroenterologist) but one of those doctors that actually has knowledge in treating a tough and incurable disease and not just how to perform colonoscopies.

    I’ve had ER doctors treat me terribly, and I’m not sure I’d want to see what they write in my file. My mom helps me keep my own medical records and includes notes like “ER doctor was an @**hole” in the notes, which can be awkward when I pass my notes on to a new physician! :-)

    Like this

    • Carolyn Thomas December 9, 2012 at 9:42 pm #

      Lovely to hear from you here, Carly. Perhaps you and your mom can develop a type of secret code ranking for your medical record-keeping? ;-) Or just specify in exact dispassionate word-for-word transcription what the ER doc said? ER doctors are the de facto gatekeepers to good care – it’s a tragedy to hear patients say they were treated “terribly” by our gatekeepers.

      Like this

  3. MentalMakeovers December 9, 2012 at 6:52 pm #

    Carolyn, I keep rereading your article.

    As a health care provider (psychotherapist) and a heart/pain patient, I keep flip flopping between the two stances. The FLOP side is that I am guilty of labeling clients as “difficult”. I find that after 26 years in practice, the older I get the less resilient I am and less energy I have. There are people who are very angry or demanding and they do take up energy. On the days I see them, I have to make sure I don’t see a lot of people, otherwise I am drained.

    I am blessed that I have my own practice and can control my schedule. And I am not dealing with physical life and death as I no longer see suicidal clients. So on the FLOP side I can only imagine what it would be like if I were a physician.

    My husband has been “FIRED” without explanation by 3 doctors. Admittedly, he’s a “difficult” patient and I suspect a few of those firings were initiated by the office staff who had been less than professional.
    ????????

    I do think that patients as professors is a wonderful idea!

    Thank you for the thought provoking post. Excellent, as usual.

    Like this

    • Carolyn Thomas December 9, 2012 at 9:55 pm #

      I know! It’s a real dilemma. There are indeed extremely “difficult” patients out there, and my heart goes out to all health care professionals who keep trying to help them in spite of this “difficulty“.

      I recall a distressing conversation one day with one of our physicians when I worked in hospice palliative care. She was doing home visits to a newly-registered patient who had also been diagnosed with borderline personality disorder. Each visit was an absolute nightmare for this doc, who told me she had to sit in her car before each home visit just trying to steel her nerves to get ready to go inside and face the patient’s outbursts. That’s Difficult with a capital D.

      But these are NOT the patients that this post or the Palo Alto study attempt to address, which are the regular run-of-the-mill patients who do not participate adequately in their own health care decision-making because they fear becoming labelled as difficult. Big difference.

      Like this

  4. Sra. Julia December 9, 2012 at 10:49 am #

    Wow! It was like reading my mind!

    I try to be the good patient while hoping that the Dr is a good Dr and is having a good day. I have been screwed over by several Dr’s and only by chance have I survived their indifference and incompetence or prejudice.

    I lucked out in finding a physician that caught my problem and wanted to fix it. But because I have an unusual history, I cannot reveal my full medical history or I will be discriminated against by most physicians and staff, even the office I deal with now I have issues with, but hold my tongue because I need competent medical care.

    Oh, how I wish I could tell them in plain English what a bunch of asses they are, but then our relationship would become adversarial and seeing as I need medical care to continue staying alive, I make like they didn’t say things that upset me and we move on. Inside I am boiling over with resentment mixed with fear that because I am a sexual minority, I am not getting nor will I get competent and timely care or be shuffled off into oblivion, I play the game. Just because someone went to med school or works in a Dr’s office doesn’t mean they checked their prejudices at the door when they came to work or that they are educated in your particular situation or give a damn. The patient is left to sort this out and make the choice as to what is best for them and hope to hell they are right in their choice.

    Like this

    • Carolyn Thomas December 9, 2012 at 12:05 pm #

      Good grief, Julia! So much of what you’re telling us is disturbing, but perhaps the most disturbing is the fact that you feel you cannot reveal your full medical history to your health care providers. That just cannot be good for your overall care.

      Like this

  5. cave76 December 9, 2012 at 10:25 am #

    The beat goes on.

    The New England Journal of Medicine asked for a vote on the most important NEJM article for their 200th anniversary sorted into decades. A psychiatrist voted for the Groves article just 9 months ago. Fortunately his chosen article didn’t make the winners!

    He’s still practicing and I wonder what his patients would think if they read his comment. And of all the medical specialties, I’d think that a psychiatrist would have the most empathy for his patients.

    Walter Fitzhugh, MD MPH

    “Taking Care of the Hateful Patient”, (April 20,1978, Vol. 298, No.16 pp. 883-887) By James Groves, MD.

    “This article stands out as the most thoughtful, insightful and useful article EVER WRITTEN on a subject which every physician can identify with. Dr. Groves reviews the paucity of articles available at the time on hate in the medical literature. He then goes on to accurately describe four archetypal patients which can easily be described as hateful: Dependent Clingers, Entitled Demanders, Manipulative Help-Rejectors, and Self-Destructive Deniers.

    “We have all cared for (or attempted to care for) each one of these types of challenging patients. Following each vignette, Dr. Groves provides realistic and timeless recommendations for the management this particular type of case.

    “This is MUST READING for all doctors, and particularly for medical students (which was when I was exposed to the article). Twenty years after the first time I read it, I continue to reflect on Dr. Groves spot-on descriptions of difficult patients, and feel both validated in my frustration and empowered by his sound advice.

    “Despite all the wonderful articles that have made it to print in the NEJM, this one has continued to serve me every day of my professional life. Thank you, Dr. Groves!”

    (His comment is shown after ‘more comments’ are chosen.
    Yeah, I’m pretty much a bull-dog when it comes to hateful physicians!)

    Like this

    • Carolyn Thomas December 9, 2012 at 5:55 pm #

      Hello Cave,
      I think it’s that particular word “hateful” that seemed astonishing to me at first. Is it the patients who are hateful to their doctors, or is it that their doctors hate them?

      Groves’ original NEJM article defines his title as meaning patients who “are those whom most Physicians dread.” Most of the scenarios he cites refer to those patients with personality disorders or other mental health issues, but one wonders now how many were actually just like us: both desperate and desperately ill.

      One category in the Groves article (the Entitled Demanders) is described as demonstrating “a repulsive sense of innate deservedness.” Yikes! I personally know quite a few desperate heart attack survivors, initially misdiagnosed (anxiety, menopause, stress, GERD, the usual suspects) before finally being admitted for treatment, who likely exhibited that “hateful” characteristic of “innate deservedness”. How dare they believe that they deserved appropriate care and timely treatment? And did their doctors consider them “repulsive” for believing so?

      Empathy? Not much from Groves or his NEJM defender, Fitzhugh, it seems.

      Like this

  6. MentalMakeovers December 9, 2012 at 9:26 am #

    I am a chronically difficult patient.

    In the ER, I insisted my atrial fib was not a panic attack and I would not take Xanax to calm down. The ER doc patted me on the knee and said “You’re a therapist so you know all about these things. Here’s the Rx to fill.” I replied that I did not have an anxiety disorder, I had a depression disorder and I wouldn’t take the meds! He left with a smirk.

    While I waited for them to unhook me from the monitors, I had another huge attack, yelled for the nurse, she got the tape, showed it to the doctor. To his credit he apologized and slapped me into the hospital.

    HOWEVER, I’m sure that at the risk of being labeled even more difficult at best, and hysterical at worst, I would have gone home, but my heart said – Uh, uh, sit tight I’ll give them a “run” for their money. My heart is much smarter and braver than I.

    P.S. I have fibromyalgia and long ago lost track of all the doctors I’ve seen who couldn’t figure out what was happening and gave me referrals to see psychiatrists.

    Like this

    • Carolyn Thomas December 9, 2012 at 6:11 pm #

      Well, if there was ever a more perfect time to have that Afib incident, I can’t imagine when that might be. But again, it begs the question: what would have happened had you not had that cardiac event at that particular moment and thus been appropriately diagnosed? Very few doctors, unless they have personally experienced not being taken seriously by other doctors when they are ill, could even imagine what it’s like to have their serious symptoms repeatedly dismissed or misdiagnosed.

      Like this

  7. Mary December 9, 2012 at 9:01 am #

    I think the “Difficult Patient” issue arrives as part of a triad, or maybe more.

    1) Blame is cast on said “Difficult Patient”, and yes, I do understand there are plenty of them. Having worked with the public, I know that people come in all forms, including bat crazy and difficult. I also know that per the research above, it takes tremendous skill and luck to both “present well” as a patient (and hope that you can be lucid and likable while very ill), and to be able to hold up the patient end of the complex interaction.

    2) Another part of the triad to sort out is Knowledge Bias: that is because particularly with regard to female presentation and unique characteristics, medicine is up to several decades behind the curve, having done very little of the known research on women subjects. What comes out of that is we are not believed. Doctors, institutions and computer-based knowledge bases often function with a blind bias with this. A good neutral example is a new drug that may come out and the patient is at risk due to the lack of information. It tested safe but it turns out to have an unanticipated deadly side effect risk. Vioxx anyone?

    3) The third leg of this stool is Gender Bias: a usually blind problem where the particular doctor (or patient) operates with certain assumptions and attitudes that may have to do as much with one’s personal social development as their medical training (see #2). It also reflects an institutional gender bias, such as men going into the gun-slinger roles, etc.

    When the patient rightfully is suffering under the #2 and/or #3 problems, they are sometimes (and sometimes VERY frequently) cast into the #1 pot.

    In defense of physicians, they HAVE trained AND practiced for many years to acquire the background to be an expert. They do not have the time to communicate everything that goes into their formulated judgement to explain all risks, benefits, etc to the patient: that is, unless they see a VERY limited number of patients per day, say, one to three?

    As an analogy, we all know how it is when we have a teenager and we try to distill down our education, lifespan of experience, what we have witnessed, what we know about the law, worst case scenarios, in order to give that teen a thorough grounding in a particular issue. They question and question, and then we finally resort to: because I said so.

    This is why the problem is so bedeviling ~ because any one of these issues is serious and stands in the way of patient getting help. Bottom line: as in any bias that we have tackled in a society, such as race, creed, religion, etc – it requires that everyone get off their high horse and think carefully about their own part in this tragi-comedic drama.

    Like this

    • Carolyn Thomas December 9, 2012 at 9:09 am #

      Thanks so much, Mary, for such a comprehensive overview. This could be a whole other blog post! And how to be “lucid and likable while very ill” as you say, is a big issue, isn’t it?

      Like this

  8. granny annie December 9, 2012 at 8:41 am #

    One week after returning home from my first MI in 2003, I had a bout of sudden high blood pressure during a stressful meeting. I went home and my blood pressure was still high. I was without a cardiologist as my insurance wouldn’t cover the one who did my emergency surgery and we were transferring. Therefore my husband called our PCP and the office put him on hold three times and disconnected him twice. When he finally got hold of someone long enough to ask a question, he opened with “Don’t you “F*&$ing” dare put me on hold.”

    They hung up and when I tried calling back, we were told we were no longer patients there and we needed to find another doctor.

    Like this

    • Carolyn Thomas December 9, 2012 at 9:13 am #

      Hooo boy, what a scenario, Annie! You could see this from both sides: your husband was feeling very worried about you and increasingly desperate as time went on being disconnected twice and put on hold three times, yet most medical practices understandably have some basic policy on firing patients who say things to the staff like: “Don’t you “F*&$ing” dare put me on hold!”

      Like this

  9. Dr. Elvira Aletta December 9, 2012 at 7:59 am #

    Thank you, Carolyn for a terrific article! I will give you my gut reaction:

    1. Yes I have been labeled difficult by MDs but I have been in the lucky position to be able to fire most of them.
    2. Sometimes we can’t fire them because they are the only ones around with their expertise. In that case I put up with them and tell myself my questions answered is more important than being perceived as “nice”
    3. Some MDs, I would even say many, really would like to spend more time answering questions but much of the insurance billing system is based on time spent and that hurries them to everyone’s frustration.

    Having said all that I, too, am happy that good research is actually being done in this area. Being assertive is so hard when we are feeling at our most vulnerable. The burden of responsibility should justly rest on the medical professional.

    Like this

    • Carolyn Thomas December 9, 2012 at 9:20 am #

      Thank you Dr. A for your thoughtful response. I’d add a #4 to your list: what about when patients are not so much concerned about firing a doctor who may label us as difficult, but when the real worry lies in the possibility of being fired ourselves if we speak up? That’s a far more vulnerable state of being!

      Like this

      • Dr. Elvira Aletta December 9, 2012 at 11:10 am #

        Yes, Carolyn, that’s exactly why I say it is on the physician to look at their responsibility in this. I hope the medical schools are paying attention.

        Like this

        • Carolyn Thomas December 9, 2012 at 6:23 pm #

          I think you’ve hit the nail right on the head. As I read recently about the University of British Columbia in Vancouver and their Patient & Community Voices teaching initiative in which “patients become professors” in their health care education programs: “Learning doesn’t really start until we involve patients not just as partners in care, but as partners in education.”

          And just imagine if students in med/nursing school were reading the comments here to learn about how patients feel about being labelled “difficult”.

          Like this

  10. Anne Stohrer December 9, 2012 at 6:18 am #

    This is a difficult topic – we have to advocate for ourselves, we have to consider our physicians’ reactions, we have to REWRITE the social contract between patients and physicians!

    Like this

    • Carolyn Thomas December 9, 2012 at 9:26 am #

      Thanks Dr. Anne – as both a patient and a physician, your two cents worth here is appreciated. Those are three tough requirements you list, especially the rewriting the social contract part. Where to even start? I felt so much dismay at the Palo Alto study knowing how privileged those study subjects were compared to the rest of us poor schmucks – if they cannot bring themselves to somehow figure out how to rewrite the social contract, what can the rest of us do?

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