A new medical study upholds an old truth about patients deceiving their health care providers: It happens a lot.
The deception is, of course, mutual. In medical journals, it’s generally referred to as “nondisclosure” or “withholding.” On the TV drama “House,” it was called “lying” and the lead character, Dr. House, famously claimed that everyone did it.
Whatever you call it, we know that patients and providers frequently conceal medical information from one another. Doctors, for example, might withhold information about bleak prognoses, their financial conflicts of interest or medical errors. Patients might misrepresent their alcohol intake and exercise. (In medical school, I was advised to double a patient’s estimate of their alcohol intake, and to halve their reported exercise hours.)
But deliberately withholding information can be harmful and unwise. If a doctor withholds information about a cancer’s spread, a patient can’t make rational decisions about treatment. If a patient withholds the truth about their alcohol consumption, a doctor can’t correctly diagnose their liver disease or tremors. Health care dollars are wasted chasing incoherent diagnostic considerations and illogical therapies that are rooted in misleading premises and inadequate understanding. And if the deception is ultimately exposed, the relationship between a patient and provider can suffer irreparable harm.
So, if deception can cause such serious side effects, why do patients and providers keep tolerating it?
The new medical study, published in November’s JAMA Network Open, sheds new light on this question, illuminated by the perspectives of 4,510 adult patients in the United States. From online surveys, researchers found that 70 percent of participants admitted to having deliberately withheld information from a provider at least once, given seven common scenarios – including, for example, being questioned about diet and drug intake. And the most frequently cited reason for withholding was not wanting to be judged by the provider or endure a “lecture.”
But hold the gavel and PowerPoints! That finding says as much about health care providers and their communication as it does about patients’ reasoning.
This becomes increasingly apparent when you consider the next most-frequently cited reasons for withholding information from providers. The majority of them reflect patients’ anxieties or concerns about a provider’s attitude and opinion. They include embarrassment over admitting a behavior to a provider; not wanting to be viewed as a “difficult patient”; concern about taking up a provider’s time; not wanting to hear how “bad” a behavior was or to make corrective changes the provider would likely recommend; and, finally, not wanting a provider “to think that I’m stupid.” Also high on the list of reasons but addressing a more systemic issue, participants withheld information they didn’t want documented in the medical record.
It’s important to note that the information that had been withheld was clinically relevant. Topping the list of the seven given scenarios, 38 percent of participants had avoided telling providers that they disagreed with their recommendations. Twenty-eight percent decided not to say they hadn’t understood the provider’s instructions. More than 20 percent deliberately avoided disclosing unhealthy diets, not exercising, and not taking prescription medications as instructed. And more than 10 percent chose not to mention a medication they were taking, or they kept silent about taking someone else’s medication.
It’s easy to see how these kinds of withholdings could undermine patient care and safety. I can’t count the number of times I’ve seen patients being prescribed one drug after another to manage uncontrolled hypertension or diabetes – all the while, unknown to their providers, they hadn’t been taking the previous ones as prescribed. I’ve seen too many patients get sick from drugs they were secretly taking that were causing side effects or interacting with the drugs they’d been prescribed.
But aside from any specific reason for withholding any particular information, as the prison warden in “Cool Hand Luke” famously declared: “What we’ve got here is failure to communicate.” That failure speaks volumes about troubled patient-provider relationships, frayed trust in the health care system, and the unhealthy lies, secrets, and silences that can saturate patient care. And, truth is, that can hurt.
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