When the Care Isn’t Evidence-Based, and the Provider Doesn’t Listen: Why Patient Empowerment Matters
There has been a lot of recent discussion about empowered patients, e-patients, and participatory medicine – all shorthand for patients being actively involved in their own medical care and decision-making rather than simply accepting the authority of medical providers who issue recommendations and orders that patients then follow.
The recent stories of two of my close relatives perfectly illustrate the problem of provider-patient relationships in which the patient is expected to simply accept the advice they’re given, and the hazards of doing so.
First, a menopausal female who went to a doctor for a pelvic exam. She checked “frequent urination” on the intake form, and her provider – without asking any questions or exploring the patient’s feelings about how much of an issue this was – said, approximately, “Oh, you have overactive bladder, I’ll write you a prescription for that.”
A 2009 systematic review on treatment of overactive bladder in women concluded that a woman might save 1-2 trips to the bathroom per day with drug treatment of OAB, and that “treatment effects are modest.” In other words, women typically don’t get major relief from OAB drugs (maybe one bathroom trip saved over placebo), while they contend with both the drug prices and any unpleasant side effects. This leaves aside the fact that the doctor suggested this without even asking the patient about the extent of symptoms or affect on quality of life.
The same patient is menopausal; the doctor said he would prescribe estrogen for heart protection, which the patient refused. The doctor never mentioned the findings of the Women’s Health Initiative estrogen-alone study:
The study was stopped ahead of schedule in February 2004 by the National Institutes of Health because of increased stroke risk. During 7.1 years of follow up, estrogen provided no overall protection against heart attack or coronary death in generally healthy postmenopausal women most of whom were more than 10 years past menopause when they entered the study. In women 50-59 years of age at study entry, there was a suggestion of lower rates of heart attacks or procedures to re-open clogged arteries; these findings could be due to chance. There was no suggestion of benefit in women who were 60 years or older.
The patient is in that 50-59 age range where the evidence is kind of iffy, but these issues and the weighing of potential risks and benefits were not raised at all by the physician. The patient told him in no uncertain terms that she was managing her symptoms without drugs, was concerned about her family history of stroke and blood clots, and therefore would not take an estrogen. What did she find when she next went to the pharmacy? The doctor had called in the prescription anyway, despite her refusals.
The second patient went to a doctor who attributed a persistent sore throat to TMJ and tonsil debris, and recommended an allergy test that insurance wouldn’t pay for. This diagnosis didn’t “feel” right to the patient, who thankfully sought a second opinion. That second physician was attentive and thorough enough to diagnose the throat cancer.
Thankfully, the patient didn’t simply accept the word of the first doctor (who wasn’t felt to be very thorough or interested in the problem), or let the considerable barriers get in the way of getting a second opinion from a doctor who seemed to be paying attention. Not everyone has the resources to overcome those barriers.
Of course, second opinions have long been recommended for patients experiencing difficult or complicated conditions. Seeking those second opinions, however, requires initiative, financial and logistical means, and an important first step – the willingness to believe that an expert might be wrong, and to seek additional expertise. In both of the examples above, the patient felt that the doctor was not attentive, thorough, or particularly engaged in the matter at hand. Neither physician suggested to either patient that a second opinion might be warranted. Neither addressed the other possibilities for diagnosis or treatment. Each simply proclaimed the nature of the problem, and expected the patient to go along. Problem solved.
Many people would have simply accepted the prescriptions, or the diagnoses, and done what the doctor ordered. This may be particularly true in rural small towns like the one where these two incidents occurred, where doctors are part of the town’s high society, many people may be uncomfortable questioning a physician’s authority, and education about medical evidence is sparse among the patients. While there are many up-to-date, empathetic, thorough providers out there, those that these two patients encountered were not. Yes, all providers are human, and therefore they make mistakes – however hard to accept that is when one mistakes cancer for TMJ. Hearing these two stories so close together, however, provided a great example of why questioning authority and becoming an active partner in one’s medical care is absolutely necessary to receive evidence-based, high-quality healthcare. It might even save your life.