Tapering off: more than a medical risk * PsychosisNet

You hear the same story again and again. Someone has used antipsychotic medication for years. It helps, up to a point. But there are side effects too. Weight gain, flattening, tiredness, the feeling of losing yourself. One day the wish arises to reduce or to stop. Not on impulse, but after long deliberation. And then the real problem begins.

The problem is not the stopping itself, but the reaction to it. Too much attention goes to what tapering off does and what the medical risk of it is.

Tension between guidance and your own direction

In many care settings tapering off is still seen as a risk to avoid, and not as a reality that you can handle with care. The question is often not: what do you need to explore this safely, but: why would you want this? As if stopping were mainly a sign of disloyalty to the treatment plan, or of a lack of insight. Research and experience show something else. Most people stop at some point. Often several times. That does not happen for no reason.

For many people stopping is an attempt to keep their life liveable, and not a statement against care. Side effects pile up. Functioning and identity come under pressure. The wish to feel more in charge grows. These are core questions of recovery. Yet they are often made subordinate to an abstract risk of relapse.

There is a fundamental tension here. Care providers often think in populations, guidelines and averages. People live in their own body, with their own history and priorities. What is an acceptable risk for one person is unbearable for another. You cannot resolve that difference with general advice for or against stopping.

Shared decision-making is fundamental

What you can do is take the conversation seriously. Exploring together, without deciding for someone. Sharing what is known about risks, and also acknowledging what we do not know. Making room for doubt. And above all: staying involved, also when someone makes a different choice from the one you would make as a professional.

In some countries, such as Norway, this has now been laid down in law. People there have a right to guidance when tapering off, also when the prescriber does not agree. There are specialised teams that help with slow, flexible and careful reduction. The first experiences show that this does not lead to chaos or mass relapse, but to more trust and better cooperation.

This asks for a different attitude. Not regulating everything out of fear, but taking the principle of dignified risk seriously. Acknowledging that recovery does not mean excluding every risk; it means learning to deal with uncertainty, with support.

Make room for difference

So the most important question may be how we deal with difference, more than whether stopping is wise. Difference in values, in tolerance for risk, in what someone finds important in life. If care has no place for that, people drop out. If care moves along, the conversation stays open.

And that conversation, honest, equal and sustained, may well be the best protection there is.

Jim van Os

Prof. dr. Jim van Os, Chair Division Neuroscience, Utrecht University Medical Centre. Jim works at the interface of ‘hard’ brain science, health services research, art and subjective experiences of people with ‘lived experience’ in mental healthcare.

Jim has been appearing on the Thomson-Reuter Web of Science list of ‘most influential scientific minds of our time’ since 2014. In 2014 he published his book ‘Beyond DSM-5‘, and in 2016 the book ‘Good Mental Health Care’. In 2026 he published 'Wat psychisch lijden is'.

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