Danger of the nocebo effect: when the package insert makes you ill

Tiredness, tachycardia, shortness of breath – if you read the list of possible side effects in the package insert of a medication, you can feel completely different. The same before an operation – the doctor comes for an explanation and tells you everything that can go wrong. The problem with this is that many patients then only think about complications and side effects, and they promptly appear.

Medicine calls this the nocebo effect – a negative placebo effect. This refers to positive (placebo) or negative (nocebo) changes in the state of health that cannot be attributed to the actual effect of medication or surgery.

Nocebo effect is “not just imagination”

The effects of these effects are obviously much greater than long thought, say experts who met for the largest international congress on placebo research in the Ruhr area. The findings can help make treatments more effective by communicating differently. “Placebo and nocebo effects are not just imaginary. We know that very complex neurobiological phenomena occur,” explains Ulrike Bingel, Professor of Neurology and Head of the Center for Pain Medicine at Essen University Hospital.

Bingel believes that it is therefore not unproblematic that informational talks before operations and the package inserts for medication focus primarily on the risks. “In the package leaflet, three pages contain a brief summary of ‘death and ruin.’

Words of comfort can make a big difference

In a study, Ben Colagiuri, a professor of psychology at the University of Sydney, informed patients about the side effects of chemotherapy in two different ways. The researchers told one group that 30 percent of patients experience nausea. They told the other group that 70 percent of patients did not experience nausea. The result: The patients to whom the message was conveyed in a positive manner suffered less frequently from nausea.

Based on placebo research, doctors could now be trained to support treatment with an empathetic attitude and positive communication, says Andrea Evers, a professor of psychology at Leiden University in the Netherlands. “You can learn to take the placebo and nocebo effects into account even with little time,” she says. If medical staff says in front of an injection: “That will hurt for a moment” – then it hurts the patient too. Even small, reassuring words can make a big difference, says Evers. “In this way we can improve healthcare, help patients and also reduce costs because the treatment is more effective.”

Placebo effect as an additional benefit

The researchers emphasize that the placebo effect in conventional medicine should only ever be an additional benefit to a scientifically based treatment. It is precisely in this additional benefit that they see the decisive difference to homeopathy and other alternative healing methods. Alternative practitioners undoubtedly do a lot of things right when dealing with their patients by taking their time, incorporating rituals and providing them with good information, says Bingel. “These are all aspects where we have to ask: Have we lost that in medicine?”

But she also emphasizes: “Homeopathy is based on an effective model that does not exist according to the current scientific status. You are deceiving a patient. And we expressly do not want that if we take advantage of the placebo effect in scientific medicine.”

Bingel hopes that proper communication with patients will be just as much a part of medical professional training as cardiopulmonary resuscitation. So far, this area has been developing rather slowly. “For a doctor, it is also more financially worthwhile to carry out further diagnostic equipment than to talk to the patient in peace.” That has to change. In the case of medicines, she recommends that, in addition to the legally required package leaflet, patient information should also be provided that provides clear information about the mode of action and, above all, about the benefits of the active ingredient.

In the long term, the placebo effect could be taken into account right away during drug development. Then, the professor hopes, a new drug could ideally come onto the market together with an individually adaptable information package – and with the indication that the active ingredient works best in conjunction with an accompanying doctor’s consultation.