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?
