February 16, 2021
Nocebo/placebo dance
When I first started practicing medicine after residency, I worked on the Hopi and Navajo Reservations in Keams Canyon, Arizona. When new doctors started there, the leaders spent time helping us learn about the two cultures so that we could be more effective and sensitive in our communication. Early on, I learned that communicating clearly and carefully about possible side effects of meds or the natural course of a disease if left untreated was vital. We were advised to say things like “when someone has this disease and they take this medication, sometimes a patient may have this side effect”, or “sometimes when someone has this disease, like diabetes and a foot infection, and they don’t take their meds, the infection can get worse and get into the bone. Sometimes when that happens, the foot may need to be amputated”. If I said that directly to them as a warning “if you don’t take your meds, your foot may need to be amputated”, they felt I would be willing that to happen and the bad outcome would occur. We really wanted to avoid setting up those beliefs. I learned to speak indirectly. It served me well, because I realized I can cause the nocebo effect if I m not careful. Nocebo is the opposite of placebo, which is when something has a positive effect even if it has no therapeutic value. I have carried that technique with me ever since.
Both placebo and nocebo can happen with medications, not just “sugar pills” or sham treatments in studies. It can also happen with procedures like injections. These are real and powerful effects and why we rely more on blinded placebo controlled trials to make our recommendations for treatment. We all have “anecdotal stories” about a treatment that seemed to work, despite no data supporting it, and no ability to reproduce the same result.
Statin medications which are used to lower cholesterol are notorious for causing side effects, in particular muscle aches. So much so that many people who can benefit, will not take them. However, recent studies show the nocebo effect was strong in both the treatment arm with a statin and the placebo arm- both sets of subjects had similar side effects. Many wonder if more people could tolerate statins if we focused less on the side effects and framed the choice differently.
I have seen this with people’s fears about the flu shot. “I always get sick” etc. We all need to learn how to discuss these effects more clearly. These are important factors in getting people immunized. We know people can get side effects from the vaccines. Usually sore arm and fatigue, occasionally a fever. We don’t want people to expect and fear these and then fear the COVID-19 vaccine. There is already too much vaccine hesitancy.
XKCD has a very excellent comic today explaining the benefits of the vaccine despite the side effects of fevers, chills, and fatigue. We need as many people as possible worldwide to not fear the vaccine and be willing to get vaccinated. Framing the side effects in the way I learned can be helpful. Not “you may get a fever or chills” but “some people may get a fever or chills” and gesturing away from them, not towards them. “Most people do fine,” gesturing towards them, is powerful. I swear it works.
Wash your hands, cover your nose, keep safe six, hope for the best.
And finally, my caveat is that this is my experience and my opinions, which are subject to change as more information is available, and not related to the organization I work for. Thanks for reading
https://www.google.com/search?client=safari&rls=en&q=keams+canyon+arizona&ie=UTF-8&oe=UTF-8
https://en.wikipedia.org/wiki/Placebo
https://en.wikipedia.org/wiki/Nocebo
https://www.sciencedaily.com/terms/nocebo.htm
https://www.health.harvard.edu/newsletter_article/The_nocebo_response
https://www.nejm.org/doi/full/10.1056/NEJMra1907805
https://en.wikipedia.org/wiki/Anecdotal_evidence
https://www.health.harvard.edu/staying-healthy/statin-side-effect-could-be-due-to-the-nocebo-effect
https://www.sciencedaily.com/releases/2020/11/201115185935.htm
https://jamanetwork.com/journals/jama/fullarticle/2776228
https://xkcd.com/2425/
https://www.visualcapitalist.com/visualizing-global-attitudes-towards-covid-19-vaccines/