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:(1)
“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 interviews 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 well-educated (attended/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, 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.(2)
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 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 of chest pain, nausea, sweating and pain down my left arm as acid reflux) about this alarming arm pain.
This is what I was later told by the 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 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 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.”
NOTE FROM CAROLYN: I wrote an entire chapter in my book “A Woman’s Guide to Living with Heart Disease” about the challenges of being a ‘good’ patient. You can ask for this book at your local bookshop or public library, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
Q: Have you ever been labelled as a “difficult” patient?
♥ This post was also published by Prepared Patient Forum ♥
1. Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Dominick L. Frosch et al. May 2012 vol. 31 no. 5 1030-1038
2. 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