Medicine has entered the era of shared decision making. I embrace this movement, and my bias is that rheumatologists as a group are uniquely suited to implement shared decision making successfully. But I am skeptical that true shared decision making is an achievable goal.
Shared decision making requires explaining options without bias. But each of us is a product of our environment, with inescapable preconceptions. Even if our intention is to provide nonjudgmental advice, we deceive ourselves if we believe that this is possible.
Patient Example 1
At age 40, Elaine had already endured a lifetime of disease. She had successfully overcome substance abuse, but she had not escaped the ravages of sarcoidosis that affected her lungs, liver, skin and eyes. The prednisone needed to treat the sarcoidosis had resulted in poorly controlled diabetes.
Despite the therapy, her impaired pulmonary function left her oxygen dependent, and her serum alkaline phosphatase was 10 times higher than normal due to her liver involvement. She was fortunate that her disease responded to costly therapy with a monoclonal antibody to tumor necrosis factor alpha (TNFα) such that both her lungs and liver markedly improved.
When Elaine became pregnant, all of her treating physicians gave her the same advice: Pregnancy was too great a risk to her and to the fetus. The pregnancy was terminated. A year later, Elaine became pregnant again, and again she was advised to terminate the pregnancy. She elected to ignore this advice.
I cared for Elaine as her physician before she became pregnant. I recommended the antibody therapy, which does not have an FDA-approved indication for use in sarcoidosis. I argued with her insurer to cover the cost of this therapy, which both Elaine and I believe saved her life. And I disagreed with Elaine when, despite concerns about her own health, she refused to terminate her second pregnancy. She is now the mother of an energetic 6-year-old boy, whom she aptly calls her miracle baby.
And I am still her doctor.
Where Values Intersect
Providing care for a patient results in the meeting of two value systems: the physician’s and the patient’s.
Some might argue that in a perfect world, the physician is an advisor, and the values of the patient should ultimately prevail. This is the essence of patient-centered care. But let’s assume the patient wants to take a naturopathic remedy the physician considers harmful. Is the physician obligated to object? Although the physician perceives their advice to be well reasoned, the patient most likely perceives the same advice as judgmental. Some patients with back pain may request magnetic resonance imaging and others might demand antibiotic therapy to treat their respiratory congestion. Is it good judgment to say no to these requests?
Within the practice of rheumatology, we have multiple opportunities to exercise shared decision making. Our practices include many patients with chronic diseases. We are able to forge trusting relationships that may last decades. And we offer a smorgasbord of therapies ranging from nonsteroidals to corticosteroids to cytotoxics to biologics. This cornucopia of choice lends itself to patient empowerment as rheumatologist and patient jointly navigate through the options.
I frequently say to my patients, “Think of me as your waiter. My job is to describe what’s on the menu. Your job is to choose.”
Many of my patients, however, prefer to avoid the responsibility of making a decision. “Doc, what would you do?”
Even in an idealized interaction with an engaged and knowledgeable patient, is it really possible for a physician to be neutral in the shared decision-making process?
Reality Check
A recent publication suggests that rheumatologists fail at shared decision making.
The study examined how a change in Medicare reimbursement policies might affect the frequency of prescribing specific biologic therapies.1 The authors tested the hypothesis that the recent provision to cover self-injected TNF inhibitors would increase the rate that this class of medication would be prescribed. They were also expecting to see a concomitant decline in the number of prescriptions for intravenously administered TNF inhibitors. However, no decrease was observed in the Medicare-eligible population. Instead, the study found that the preference for an infused drug was strongly related to physician reimbursement. This observation can be interpreted in several ways, but perhaps the most straightforward conclusion is that the practice of shared decision making in this area is being influenced by a financial bias that can be either conscious or unconscious.
Patient Example 2
Mollie is bright, determined and resilient, qualities that have served her well for nearly 80 years. She also has severe rheumatoid arthritis (RA), which has been complicated by small vessel vasculitis and peripheral neuropathy. I hope that I have provided her with excellent care in monitoring a therapeutic regimen that includes methotrexate, hydroxychloroquine, sulfasalazine and a biologic drug. But Mollie also has chronic obstructive pulmonary disease. About twice a year, she develops a respiratory infection, requiring antibiotic therapy and a temporary halt to her immunosuppressive regimen. Finally, Mollie has decided that the punishment—her medications—is worse than her disease. She decided to stop methotrexate and her biologic therapy. After discussing this wish, we jointly agreed that she can try this approach. However, I suspect that within a few years my compensation will depend on meeting treatment standards—one of which will include treating all patients who have severe, erosive RA with a disease-modifying antirheumatic drug. Using this standard, I would be penalized for embracing shared decision making, just as I would be docked if my patient with hypertension insisted on being treated with naturopathic remedies.
Perspective
When my younger daughter was an adolescent, she reminded me on a regular basis that I was going bald. And every day I would look in the mirror, see a full head of hair curling above my forehead and conclude that my daughter was just experiencing adolescent rebellion. The mirror never revealed to me the rapidly enlarging bald spot at the rear of my skull. My insight was imperfect.
The Hawthorne Effect refers to altering an experimental outcome by virtue of studying that outcome. The quest for self-knowledge obeys the Hawthorne Effect. By virtue of the introspection that achieves the insight into self, we change ourselves and, ironically, no longer accurately know who we are. But isn’t being nonjudgmental all about self-insight? How can one be nonjudgmental unless one can recognize his or her own biases?
Each of us has made choices in life: Choices about religion or no religion; choices about where we live; choices about a partner; choices about education; choices about material, such as cars, clothes, books, television shows and toothpaste. Each choice reveals our own preferences. But because each of us has preferences, we cannot be neutral. Truly balanced advice is an ideal—not a reality. While we listen empathetically to our patients as they participate in the joint decision-making process, we delude ourselves if we fail to recognize how our own biases affect our advice.
When Elaine was pregnant, I could estimate for her the chance that the fetus would not survive the pregnancy or her own chances of survival. That was my judgment. I could recommend a medication for an indication not approved by the FDA. That was another judgment. But could I really know the happiness that she would derive from experiencing motherhood again? In the end, my advice became judgmental.
“To thine own self be true,” is a marvelous example of enduring advice. It is uttered by Polonius as he counsels his son in Hamlet. Despite the wisdom that he captures in six pithy words, Polonius is himself a bit of a buffoon, a “tedious old fool,” in Hamlet’s words. How ingenious of Shakespeare to coin an aphorism that has been remembered for centuries by placing these words in the mouth of an errant father.
As rheumatologists, we are like Polonius, glibly dispensing advice. Shared decision making is an admirable ideal, but we deceive ourselves if we believe that we achieve it.
James T. Rosenbaum, MD, is professor of ophthalmology, medicine and cell biology at Oregon Health & Science University in Portland, Ore., and chief of ophthalmology at Legacy Devers Eye Institute, also in Portland.
