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Patients used to accept doctors’ orders without question. Today, more are asking questions and challenging their doctors’ opinions. However, even those who do it politely are likely to be labeled “difficult.” A doctor whose late wife nearly made a career of being a difficult patient discusses how patients can do it respectfully and fruitfully.

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  • Dr. William Steinbach, Professor, Chief of Pediatrics & Infectious Diseases, Duke University

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Difficult Patients

Reed Pence: Over the last couple of decades the relationships that people have with their doctors have changed drastically. For example, patients of a much older generation would never dream of questioning their doctors orders. Today however patients are supposed to be informed, they’re encouraged to ask questions and in some cases even challenge their doctors orders. The kind of behavior that not long ago would’ve earned you a label as, “a difficult patient.” That’s what doctors called Michelle Mayer; she died 9 years ago but her story continues to impact the way medicine is taught at many medical schools around the country.

Dr. William Steinbach: Michelle Mayer was my wife of 11 years; she died in 2008, October 2008, of Scleroderma, which is a devastating autoimmune disease. She was diagnosed after quite some time working through the medical system, a few months after we were engaged, about 7-8 months before we were married and got sort of progressively worse during our marriage. We had two children together, those two children really help her disease in one sense because if sort of put it at ease somewhat in remission at some level, and then she got worse and worse and worse and died on our 11th anniversary in October 2008.

Pence: Dr. William Steinbach, Professor and Chief of Pediatrics & Infectious Diseases at Duke University.

Steinbach: She was a Professor of Public Health policy at UNC School of Public Health in Chapel Hill, North Carolina and her research sort of focused on care and delivering care and delivering care in the sense of, “how do you reach the most patients? How do we design health care systems to be the best for the actual patient?” Where she got in the sort of personal standpoint was probably most famously her article in Health Affairs about being a “difficult patient” and this really came about because of her own experiences. She would go to health economic conferences and things related to that and hear people talk about healthcare policy but most of them had no understanding of how to deliver healthcare.

Pence:Mayer’s first career was as a nurse taking care of pediatric oncology patients while she pursued her Masters degree and her Doctorate in Public Health.

Steinbach: And then she had her own experience as a patient with a very serious illness. So, most of the people she met in the healthcare policy field, she always found either did not ever delivery the care nor really were patients with a serious illness besides a broken leg or something like that. So they really sort of missed the boat on both levels, so she really thought this was the best approach for her to focus her career and one of her sort of main mainstays was the concept of a “difficult patient” and she really came up with that idea because she knew when she was a nurse on the wards, and she of course heard me through my medical school residency and fellowship years and everything and my training, often when doctors talk about a “difficult patient” its sort of like a customer service person referring to a “difficult customer.” The person is obviously referring to there being rude, misunderstanding, wont go away, won’t acknowledge something, wont’ do what they’re told, that kind of thing in a “difficult” sense.

Pence: Some patient’s doctors refer to as “difficult” won’t take their medication or they refuse therapy, but in Mayer’s estimation they also include those who challenge their physicians about prescribed treatments. They ask “why?” and because Mayer was medically educated, that’s what she often did.

Steinbach: She, as an educated person with a PhD in Health Policy, would read the literature, and her husband was a physician, would read the literature and say well, “is this the best thing for me? I read this study as well and you’re telling me to do A but it looks like B is even better” and she would sort of say, “look I’m advocating for myself here, I want the best therapy.” She would always contrast that to – generally it was an older generation of people who would just sort of take everything the doctor said as gospel – classically older people would go in and not question the doctor, not even know what the doctor was even talking about. If they left their visits and you said, “what did the doctor really tell you?” They had no understand of it, it was sort of like “well I’m not to do this, I don’t know why I’m taking the yellow pill versus the white pill, much less the ramifications of everything.” Michelle was quite the opposite of course, understanding well “this is my health,” because she had a serious sort of fatal illness, “this is my life, I want to be involved in making decisions.”

Pence: And the upshot of that attitude?

Steinbach: She quickly found that some doctors viewed her as “difficult” and didn’t want to talk to her because she would sort of ask questions then, and she of course always questioned them in a professional polite way of saying, “well actually I read this a different way.” Sort of how physicians would talk to each other, when you’re debating what’s the best approach for certain patients; you’re not yelling at a physician, you’re sort of wondering out loud and challenging saying, “well what’s the best approach for the patient.” And she found some doctors that would really listen to her and sort of say, “well you have this awful fatal disease, what do you want to do? What are the most important things for you?” And so she definitely had a compare and contrast throughout her experience of the physicians she met – some that were, you know, wonderful and some that really took her life in the bigger pictures and asked what did she want and some that were more concerned with their own agenda.

Pence: At the urging of a close friend Mayer started writing a blog about her experiences. Writing was cathartic and the comments received from patients around the world who identified with her experiences was empowering. Eventually she wrote an article for the online medical journal Health Affairs titled, “On being a difficult patient.” It was published just a month before she died but that article is still required reading for students at some medical schools around the country.

Steinbach: It sort of makes you pause and figure out, as a medical trainee, how do patients look at this? You know, someone once joked to me as an example that a simple surgical procedure is only simple of the surgeon – for a patient who’s undergoing something as standard for a heart surgeon as an aortic valve replacement, it’s only standard and simple for the cardiac surgeon who does a hundred of these a year – for the patient, it’s incredibly important. So understanding that, sort of putting it all in context and then if a patient is challenging you in the sense of “Well tell me why we’re doing this,” as a provider myself I welcome the patient’s that really want to think and really want to understand thing.

Pence:However in asking all her questions, Mayer was concerned that she would unintentionally drive away her caregivers. So she tried to strike a delicate balance when advocating for herself.

Steinbach: This is the person taking care of you; this is potentially the only expert in the field that’s in your area code as an example. You don’t want to operate under the assumption that, “I don’t want to irritate this person. They might not spend any extra time with me, they might not explain something as well, god forbid they might even give me the less optimal therapy and spend less time researching it.” Generally that’s false, generally the provider’s do the right thing, but everyone likes to be treated appropriately. So I do think there is a professional and nice way to sort of do it; challenging a physician should not be something that people think they should not do. You want to challenge someone appropriately just like you’re challenging the repairman at your house, the mechanic, the ‘anyone’ you’re saying, “really? do I need that fuel injection changed here? Does that really make sense? I only have this much money, what’s the best way to do this?” when you’re talking about your car or “what’s the best way to make this car live longer?” it’s the same idea. By the same token you have to have the ability to sort of patronize the physician you sort of like best.

Pence: In some ways, Steinbach says, it’s not unlike patronizing a restaurant.

Steinbach: You would never go to a restaurant and have awful service and awful meal and go back. So if the physician is not giving you the care you need and you have the ability to and they’re not the only provider in the entire part of the state, then I would find someone else.

Pence: Steinbach says that unfortunately some patients who aren’t rude or non compliant but are certainly assertive are sometimes still labeled as “difficult.” But that happens less frequently today.

Steinbach: I’d like to think that the people who’ve read her article, and then clearly ME, have become better providers because of it. Because I’ve had the first hand experience, I’ve done the best I can to sort of live what she wrote but I can only imagine this continue to happen. I’ve had other friends who’ve been sick at different levels, go to different providers and they say they wish they… you know, you almost need to have an advocate with you. The “difficult” label I think should be reserved for someone… you can imagine someone who’s difficult from a customer service standpoint of just screaming at the assistance and everything like that, or always late; cancelling appointments at the last minute, you can imagine “difficult things” which would be difficult in any customer service field – medicine’s no different. Being assertive is more – you just want to understand everything.

Pence:And the best ways to do that?

Steinbach: This involves reading and research, and we have to be careful where that reading research comes from. There are specific websites that are more helpful – the CDC, the NIH – things like that. You want to be careful reading websites that proclaim of course that they have the cure to everything. There is a lot of misinformation, medically speaking, on the Internet so you have to be careful. But understanding what your disease is in a light sense, not the exact molecular pathophysiology of your disease, that’s impossible for you as a non-physician to understand often. But to understand sort of the implications of it, how does it affect your life, what are your goals – some chronic illnesses there is no cure – so the goal of “cure” is not realistic. It’s a goal of, how do you best go about living that – if you have chronic pain, how do you manage the chronic pain that works best for you? What do you want to do? If you want to be able to run again, walk again, go to your children’s soccer game, play the piano, what do you have to do and what do you have to do to get there?

Pence: Those can be extremely difficult questions but 9 years after her death Michelle Mayer’s blog still resonates with patients around the globe.

Steinbach: Both when she was alive and after she passed away, that people who posted comments about the blog – even people from literally across the world. And at one point, I don’t remember the exact numbers, but I think she had over 100,000 people had viewed the blog (because) it sort of got passed on, forwarded. Someone sort of bearing (her) soul and saying, “this is how I’m dealing with a difficult illness.” She was very blunt and open in the way she was dealing with everything saying, “these are the cards I was dealt and this is how I’m going to deal with it.” Working with her physicians to maximize the best thing for her, this is not different than some other patient with a different illness who maybe has a terminal disease and is trying to figure out, “ok I have a few months to live or a few weeks or so, what’s the best thing that I want to do?

Pence: Being assertive without being rude is difficult for many of us and when you’re in pain it may seem impossible. But with Michelle Mayer’s help many healthcare providers are learning the difference between their difficult patients and their assertive ones and why being assertive isn’t necessarily a bad thing. You can find a link to Michelle Mayer’s article on being a difficult patient by visiting our website at RadioHealthJournal.net. Our writer/producer this week is Polly Hansen. I’m Reed Pence.

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