|
On Being A ‘Difficult’ Patient
PREFACE: Rarely do difficult patients get to weigh in on why they are "difficult"—and rarely do doctors get to explain to difficult patients why it’s difficult to care for them. In the first of these essays, patient Michelle Mayer, a research professor in North Carolina with a chronic autoimmune system disease, tells why she eventually became a difficult patient, and how it helped her get the doctoring she needs. Next, Tony Miksanek, a doctor from a small town in Illinois, details what happens during visits with some of his difficult patients, all of whom, in different ways, demand things that go against his best professional judgment. Mayer and Miksanek might not reach agreement on all of the issues involved, but there’s one thing on which they concur: policies that prescribe brief, pre measured office visits don’t allow enough time for patients and doctors to get to know one another, discuss medical issues, and reach considered decisions. Until patients and doctors have the time—literally—to work together, the process often will be difficult for all involved and results might be painful as well.
A COLLEAGUE RECENTLY introduced me to a young physician, noting that her research interest was difficult patients. "Really," I responded. "I’m a difficult patient, and it’s served me well." I assumed that she considered being a difficult patient a good thing, but her pained expression suggested otherwise. We shared an awkward moment before parting, and I walked away considering the plight of the "difficult" patient. In the clinical world, the term difficult is applied to a variety of patients: the noncompliant; the rude, abusive, and manipulative; the malingering; the mentally ill; the skeptical. In my case, I too frequently challenged my doctors with questions and too often chose a treatment that differed from what they’d recommended. I consider myself to be an assertive patient, but it was clear on many occasions that some providers thought I deserved the "difficult" label. How did I earn this distinction? Surely some of it was genetic predisposition; I was born with a feisty personality that compensates for my diminutive stature. But mostly it was born of necessity, a survival instinct that involved both fight and flight.
NEARLY TWELVE Y EARS AGO, WHEN I WAS A graduate student in public health, I developed severe hand swelling and was diagnosed with Raynaud’s phenomenon, a condition where small vessels of the hands and other parts of the body severely constrict in response to cold and stress, depriving surrounding tissues of oxygen. When blood work showed that I also was producing antibodies to my own cells, including one associated with scleroderma (a disease in which hardening of the skin figures prominently), my internist referred me to the rheumatology clinic at a major teaching hospital. The rheumatology trainee and attending physician spent a great deal of time with me during my initial appointment, intrigued that my symptoms coincided with exposure to an organic solvent when I’d refinished a rocking chair, but ultimately concluded that I merely had Raynaud’s phenomenon. During the next six months, I accumulated symptoms. I’d been an avid cyclist, and suddenly I had difficulty getting out of bed each morning. When I returned to the rheumatology clinic for a follow-up appointment, the doctor attributed my symptoms to stress, irritably dismissing me with, "You just have Raynaud’s." I knew that physicians often blamed stress for the "inexplicable" ailments of young women; I refused to be dismissed so easily. I sought a second opinion from another rheumatologist at a different major academic medical center, and he reiterated the same diagnosis. Although I truly believed that I had scleroderma, I wanted to be wrong. So I acquiesced and, by doing so, caused further delay in my diagnosis. Even if I’d wanted to pursue it further, I’d already been to two reputable academic medical centers and been assured that I didn’t have scleroderma. Six months later, when the skin on my back began to itch uncontrollably, I returned for a follow-up appointment at the second rheumatology center. After the doctor raised my shirt to examine my back, he sighed sadly, then said, "I’m very sorry. It looks like you have scleroderma." Being right never tasted quite so bitter. During the following months, I put my new Ph.D. in public health to good use, devouring the medical literature on scleroderma. Also known as systemic sclerosis, it’s a chronic autoimmune disease; scleroderma is incurable, highly variable across patients, and potentially life-threatening. After I read the literature, it was clear that little was known about the disease and that much of the existing research was deeply flawed (often because of difficulties in generating sufficient sample sizes), leaving me with scant true knowledge on which to base decisions. I learned that with scleroderma, little could be stated with certainty. I traveled to two scleroderma experts in distant cities in hopes they had insights beyond what was published in the medical literature. The first advised me to take methotrexate, a recommendation that confused me. "Randomized controlled trials have shown that methotrexate was ineffective in scleroderma," I observed. He responded curtly, "If you’re going to base your treatment decisions on the results of randomized clinical trials, you might as well do nothing," as if incorporating peer-reviewed scientific evidence into my treatment decisions was somehow misguided. When I pressed him on other issues, such as whether it was wise for me to become pregnant, he promptly informed me that he had a full waiting room and that he’d answer questions later by phone. I’d wasted my time and money traveling more than 500 miles for the visit. One month later, in a different city, another scleroderma expert warned that I was going to become "very sick, very fast." All this expert advice left me feeling as if I should lie down and die. Those first months after the diagnosis left me hopeless, but my husband prodded me to fight, and soon my survival instincts kicked into high gear. Eventually I began to see scleroderma as a hurdle—a high one, but clearable with effort. I wanted my life back. I reread the limited literature on pregnancy for women with scleroderma. The major risk was kidney failure and, consequently, premature birth and poor maternal outcomes. But given that I was positive for the anti-SCL70 antibody, I was at lower risk of a kidney crisis than were scleroderma patients with other auto-antibody profiles. There was little in the literature to suggest that I was at high risk for either a poor fetal or poor maternal outcome, so I defied the recommendations of the scleroderma experts, both those I had seen and those published in the medical literature, and got pregnant. I assembled a cadre of wonderful physicians—a rheumatologist, pulmonologist, and perinatologist—willing to see me through the pregnancy. I had no need to be difficult with these providers: They listened to me and trusted my instincts, respected my scientific knowledge, and understood my values. For me, pursuing motherhood was an act of hope, not an act of defiance. Within twenty-six months, I bore two healthy children without causing further harm to my own body.
I'VE FACED MANY DECISIONS ABOUT MY CARE during the past twelve years, and my assertiveness has been greeted variably with contempt, resignation, and, at times, support. A few years ago, I started seeing a new local rheumatologist with an interest in scleroderma, one who I hoped would work with my primary rheumatologist located several hours away. At my first visit, the physician walked into the room holding my lung function test results. Before doing anything else, he informed me that I needed to go back on chemotherapy to treat what appeared to be advancing lung disease. (Chemotherapy is used to treat the inflammatory process believed to cause scarring in scleroderma-associated lung disease.) I’d tried chemo previously with only a short-term benefit, so I was skeptical. I returned home and graphed six years of my lung test results. When I e-mailed the results graph to my new doctor, I wrote that I didn’t agree with the assessment that I needed chemo; I would reconsider chemo only if there were evidence of a decline at my follow-up appointment. For the next three months, I used my treadmill religiously. On my next visit, my lung function had increased 20 percent, an unprecedented improvement. When my rheumatologist reviewed the test results, he sheepishly said, "I guess you were right." Yet he continued to doubt my judgment. Perhaps he didn’t realize that I’d been battling scleroderma longer than he’d been a doctor. Our clinical relationship lasted less than two years. Bucking the system isn’t easy. Scleroderma causes deep, crater-like skin ulcerations, and during a four-year period, I had one on my elbow that wouldn’t heal. I saw eight physicians, including two specialists in wound care. After glimpsing it briefly, a dermatologist who directed a local wound clinic informed me, "I can’t do anything about that." At another wound clinic in an academic medical center, a vascular surgeon concluded that he couldn’t help me—without taking a medical history or asking what medications I was taking. And for his five-minute visit he charged me $151. I fought with the medical center to be reimbursed for that visit, writing to the department chair, speaking with the clinic administrator, and complaining to patient services. As I noted, no one would pay a mechanic who merely flips open the hood of the car, glances at the contents, diagnoses the problem as unfixable, and charges for the "service." Should medical care be different? Twenty months later, the medical center reimbursed me for the visit.
WHY DID I BECOME DIFFICULT ? It wasn’t my first choice. In the physician-patient relationship, trust on the part of the patient is a consequence of a number of factors, including perception of the provider’s technical competence, interpersonal skills, and ability to act in the patient’s best interests. In other words, the provider knows what he or she is doing, treats the patient what could be described as "nicely," and acts in a way that the patient would act, given access to the same knowledge and information. Being difficult was my natural response when my doctor was incompetent, rude, or domineering. I didn’t need a physician to be my "perfect agent" (the phrase from health economics that the physician is the patient’s agent). I needed a physician to be an additional source of information and insight to support my informed decision making. I wasn’t interested in being told what to do, and I expected my doctors to respect my right to make truly informed choices that were consistent with the way in which I wanted to intervene in my disease and live my life. But being a difficult patient is a tricky proposition. By advocating for myself, I risk incensing the person on whom I depend for care. I tried being the "good" patient. I suppose like many young women, I was raised to please others. My natural inclination is to be pleasant, because, in all honesty, I want people to like me, and I believed that others, including doctors—both male and female—approached interpersonal exchanges in the same way. In return for being a pleasant patient, I was misdiagnosed for fourteen months, given scientifically unsound advice about treatments, and warned against having children despite limited literature on scleroderma and pregnancy. When I finally decided to become a difficult patient, terminate relationships with unhelpful physicians, and find like-minded providers willing to inform rather than dictate my treatment decisions, I started getting the care that I wanted and needed. Although some might label me as "difficult," others might call me "empowered." My empowerment allowed me to accommodate scleroderma into my life rather than surrender my life to the disease. It was the difference between becoming a patient with scleroderma instead of being a scleroderma patient: I came first, not my illness. I wish more providers treated me rather than my diagnosis.
WHAT I'VE WANTED AND NEEDED FROM MY PROVIDERS was to be truly heard and to have my approach to illness understood and incorporated into my care. What I could give my providers in return was twofold: complete clarity on my desired outcomes for my care, and reassurance that I truly understood the limitations we faced in addressing my illness and the myriad medical problems it brought to my life. Thankfully, I’ve found providers with whom I’ve established beneficial long-term relationships. For the past six years I’ve made an annual, five-plus-hour pilgrimage (one way) to Charleston, South Carolina, to see my primary rheumatologist, a world-renowned expert in scleroderma. He doesn’t use his academic pedigree as a weapon or as a shield. He is down-to-earth and compassionate. At every visit we sit together like old friends and discuss my life, health, and disease. He makes every effort to maximize the quality and length of my life. He is honest if he doesn’t have an answer to my questions or a solution to my problems, and he is capable of saying, "I don’t know." Having met my young children, he knows that my goal is to live—at a minimum—twelve more years so that I can help raise them to adulthood. Together we celebrate the passing of each year as a victory against my disease, and I know he rejoices in the amount of normalcy that I’ve maintained despite scleroderma’s multi-system assault on my body. And although his efforts to ease my suffering often fail—he says that in scleroderma a 50 percent success rate in treating a symptom is the best that can be hoped for—I know failures aren’t for lack of trying. Back home in North Carolina, I also have a smart, affable, and accommodating family practice doctor who readily admits that she doesn’t know much about scleroderma, but she treats my wounds and collaborates with other physicians whenever necessary. And when nothing seems to work, she empathically observes, "This stinks." I appreciate that. Sometimes a physician’s mere acknowledgement of the obvious makes the suffering much more bearable. I’ve often pondered whether there are characteristics that predict whether a provider will be willing to let me be the ultimate arbiter of my care. But I’ve found that doctors’ receptivity to my involvement in my own health-related decisions doesn’t vary systematically by age, sex, or specialty. The only distinguishing characteristic is that certain providers seemed to enter the room with a preconceived notion that I, as the patient, brought valuable information about my personal experience with my illness, my values, and my goals. Many also realized that as a scientist, I have the ability to interpret the literature, and a few even treated me as resource. I found that those providers who saw me as a partner rather than a passive recipient of their knowledge and advice were the most supportive and helpful. Recent policy efforts aim to increase patient empowerment using patient-directed interventions such as health literacy initiatives, public reporting of quality indicators, even consumer-directed health care (which I’m aware some argue is directed more at consumers than by them). These initiatives encourage transition from a prescriptive approach, where the patient is instructed to follow the provider’s decision on treatment, to a collaborative approach, in which the provider informs the patient’s decision. Some physicians have made this transition, but in my experience, many haven’t. Creating empowered patients in a system unwilling or unable to accommodate them is a recipe for failure. I am the quintessential empowered patient—armed with the education, information, insurance, and finances (and the chutzpah) to manage my care—and, quite frankly, I’m exhausted. I don’t regret being difficult, but I do regret that so many people must settle for substandard care because they lack what it takes to advocate for their own needs. All too often, my care involved abrupt, problem-focused visits that were a poor substitute for the patient-focused encounters that chronic illness really requires. Why? Three reasons spring to mind: who we train to provide care, how we train them, and how we pay them. Until we create a health care system that trains and supports providers who can listen to and communicate with patients effectively and that financially rewards these providers for doing so, my story will be a common one. We must pursue medical education reforms to enhance providers’ interpersonal skills as required in the core competencies delineated by the Accreditation Council for Graduate Medical Education. We must rethink a system that disproportionately rewards medical testing and procedures rather than thorough and complete histories and physical exams. But ultimately, improvements in patient-provider communication will require a willingness to bridge the deep divide created by notions of professional dominance and a passive patient role. We will need to encourage patients and physicians to relate to each other as fellow human beings, each with much to bring to the examining table.
Michelle Mayer (mayer{at}schsr.unc.edu) is a research assistant professor in the Department of Health Policy and Administration at the School of Public Health, University of North Carolina at Chapel Hill. Her blog, "Diary of a Dying Mom" (essays on parenting, living, and dying), is at http://diaryofadyingmom.blogspot.com. The author thanks Richard M. Silver, William J. Steinbach, and R. Gary Rozier; anonymous reviewers for helpful comments on previous drafts; and the sprint manuscript team at the School of Public Health, University of North Carolina at Chapel Hill.
Related Article
Related Blog Posts:
| ||||||||||||||||||||||||||||
Top
Bucking The System
Becoming Difficult
