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This guest post was written by Charlotte Blease, Ph.D.
“Gosh, you look absolutely terrible!”
Many of us have heard these words uttered when we’re not feeling at our best. Perhaps we’re lying low with a virus, feeling exhausted, or even feeling like we could vomit. Hearing these words, however, may make us feel even more ghastly — quite literally. In my and my co-authors' new book, The Nocebo Effect: When Words Make You Sick, clinicians, psychologists, neuroscientists, anthropologists, philosophers, and ethicists delve into one the most fascinating but overshadowed phenomena in healthcare — the nocebo effect.
The nocebo effect is sometimes characterized as the ‘evil twin’ of the placebo effect. The latter refers to those positive health benefits that can arise when we expect to feel better and do. The nocebo effect is those adverse outcomes that arise from negative expectations.
Fascinating studies suggest that, like our loved ones being too candid, the words our clinicians use might influence nocebo effects.
Beyond COVID-19, a growing body of research shows that nocebo effects may be commonplace in health encounters and that the verbal suggestions uttered by clinicians really do matter.
Dr. Dirk Varelmann is a specialist in anesthesia at Beth Israel Deaconess Medical Center in Boston who explored whether the way in which a local anesthetic injection was described might influence experiences of pain. In a randomized study, one group was informed, “You will feel a big bee sting; this is the worst part;” while the other group was advised, “We are going to give you a local anesthetic that will numb the area, and you will be comfortable during the procedure.” Those patients who heard the negative suggestion reported significantly higher pain.
Take another study of beta-blockers for patients with high blood pressure. Those who were informed that the treatment side effects may include erectile dysfunction were twice as likely to report this problem compared with those who were told nothing about potential side effects.
Or consider another experiment that pioneered the so-called ‘open-hidden’ study design, Italian scientist Fabrizio Benedetti and his team investigated pain in patients following surgery. One group of patients was honestly informed that their morphine administration had been interrupted — the research team called this the ‘open group.’ In the other group, patients’ morphine was interrupted without them knowing — the team dubbed this the ‘hidden group.’ Professor Benedetti discovered that patients in the open group reported considerably higher rates of pain — they also demanded more painkillers than those who remained none the wiser.
It seems that the truth may sometimes be a bitter pill to swallow. If words worsen our symptoms via nocebo effects this invites an ethical dilemma: when is too much information a bad thing? Should doctors restrict what they tell us if it prevents them doing harm? Or should they fully respect our need to know, and divulge all the nasty side effects even if we feel worse as a result?
Of course, when our friends or family say these things they don’t set out to make us feel worse. But in healthcare contexts, what clinicians tell us — or even what they write in our accessible electronic records — really could have implications for our symptoms, and this in turn may have ramifications for whether we adhere to medications, or even drop out of care. Certainly, studies already show that side effects are one of the main reasons patients discontinue their meds.
The nocebo effect is an emerging area of research. Much more work needs to be undertaken to understand the prevalence and risks associated with this phenomenon.
How can this ethical dilemma can be resolved for the good of patients? What strategies can doctors use to frame their information, and what patients can choose to do to reduce the risks of nocebo effects? Other elements include the biological and psychological mechanisms of the nocebo effects, the role of the media in transmitting nocebo effects, and how COVID-19 may have provided the biggest natural experiment into the phenomenon yet. One review of clinical trial data estimated that three-quarters of the vaccine’s side effects were due to nocebo responses.
Words matter in patient care, so let us choose them carefully, and wisely.
Charlotte Blease, Ph.D., is an Associate Professor in Health Informatics at the Department of Women’s and Children’s Health, Uppsala University, Sweden, and a Research Affiliate at Digital Psychiatry, Beth Israel Deaconess Medical Center, Boston.
