As far as I know, my grandmother never used the term "nocebo effect," but she did understand its meaning. "Expect things to go badly, and they will," she'd caution.
More formally, the Oxford English Dictionary defines "nocebo effect" as, "A detrimental effect on health produced by psychological or psychosomatic factors such as negative expectations of treatment or prognosis, cultural beliefs about illness, personality traits, etc."
This concept is clearly demonstrated within the context of drug research when human subjects given only "sugar pills" report having side effects of the drug being tested.
By comparison, in the clinic, patients can suffer nocebo effects when given actual drugs or diagnoses. A common example involves a patient feeling well on a medication until he just happens to see an advertisement for his drug in a magazine or on TV. The rapid-fire, encyclopedic listing of all potential side effects leaves him wondering whether he should've paid more attention to his body, because maybe, just maybe, he's been having drug side effects 1-through-8, and 484-through-521, and 2,268-through-2497, and ...
Patients with established diagnoses can also experience nocebo effects with worsening of their symptoms. For example, a patient with pneumonia might feel sicker after hearing scary public health warnings about lethal flu. His breathlessness may worsen after visiting an anxious doctor.
He might succumb to dread after scouring the Internet and discovering that pneumonia could be caused by certain exposures to rats and birds, and lions and tigers and bears, oh, my!
In both examples, patients suffer nocebo phenomena -- harmful effects on health induced or driven by psychological factors.
Clinical medicine is duly paying greater attention to nocebo effects, particularly where drug treatment is involved. Here, mechanisms for patient harm can be multipronged. Besides influencing the occurrence of side effects, patients' fears or negative expectations can also undermine a drug's efficacy and a patient's resolve to comply with treatment.
An article this month in the Journal of the American Medical Association addresses strategies to help minimize nocebo effects from drugs. Its author proposes that a major key to success requires doctors to become more aware of the ways they unintentionally contribute to patients' negative expectations, and to adopt more empathic communication styles when conveying information about possible risks.
She additionally calls for patient-oriented language on drug information leaflets that better conveys "abstract information, such as the probability of the occurrence of adverse effects, rather than just listing all possible unwanted side effects."
Her recommendations seem so sensible, so blatantly obvious. Still, why haven't they been universally implemented?
The author reminds us that, from a legal perspective, drug package inserts must list all potential side effects and state them in standardized terminology. Clearly, this convention provides legal protection for drug manufacturers who can always point to a package insert to prove forewarning of a side effect to an injured patient.
But such inserts are written primarily for drug corporations, not patients. And their off-putting legalism, palpable defensiveness, medical jargon, and exhaustive data-dumping can rattle patients, fueling negative expectations.
And while the JAMA article also suggests more empathically targeted patient-physician communication, it nevertheless remains tricky for doctors to know what right amount and scope of information will help patients make fully-informed choices promoting their welfare -- all the while not inducing nocebo effects that sabotage those goals.
Patients often have trouble shaping these conversations as well. In the first place, without medical backgrounds, they may not know what information they need. They may feel uncomfortable conversing with a doctor they don't know or trust, a doctor who seems to have no time.
In the recent past, doctors often managed such dilemmas by withholding potentially hurtful information from patients and making health care decisions on their behalf and in their perceived best interest -- called "beneficent paternalism." But the ethics pendulum subsequently swung in another direction. Nowadays, physicians are more likely to step back and encourage patients to make decisions themselves after learning everything they can about a disease or treatment -- a practice upholding notions of "patient autonomy" and "informed consent."
So, how should doctors and patients best navigate the information highway to avoid harm?
"Begin with doctors' empathic listening and curiosity about their patients' concerns," replies Dr. Jodi Halpern, a psychiatrist-philosopher and associate professor of bioethics at UC Berkeley's School of Public Health. She is also the author of "From Detached Concern to Empathy -- Humanizing Medical Practice." It is a seminal book about patient-physician communication.
Halpern explains that "empathizing with the dilemma over whether to take the drug or not" makes it more likely that patients will adhere to treatment and more likely to disclose side effects. "This," she says, "is a good way to reduce nocebo effects while still respecting patient autonomy since the doctor is inviting more reporting of problems and adverse effects -- not silencing or attempting to minimize them."
Halpern also asserts that patients are generally empowered by information -- when it's framed for their use. But such user-friendly, patient-centered information is often hard to come by in our fear-based, legalistic culture.
In the meantime, she says, "While we patients struggle with these decision-making dilemmas, it helps to feel that we're working as a team with our doctors."
And it probably couldn't hurt to know a little about nocebo effects.
Dr. Kate Scannell is a Bay Area physician and the author, most recently, of the novel "Flood Stage."