The patient is the one person in the room with no vote on their own care

A woman I heard about left her intake feeling, in her own words, like a form that had been filled in around her. She had answered the questions. She had been kind. And then a diagnosis was named and a treatment was set, and she nodded along, because that is what you do when the person across from you clearly knows the way. It was only weeks later, sitting with a treatment that did not fit the life she was actually living, that she could put words to what had bothered her. Nobody had asked her what she wanted. She had not even known there was a choice to make.

Here is the uncomfortable part. What she was missing has a name, and it is not a wish or a nicety. It is the agreed clinical standard for exactly that moment. So what was actually withheld from her? Not warmth, not competence. A standard. Shared decision-making is a defined, four-step process: the professional tells the patient that a decision is to be made and that their view matters, lays out the options and their trade-offs, talks through the patient's preferences, and only then settles or defers the choice (Stiggelbout et al., 2015). It was built into a working consultation model, three conversations that move from supporting the patient, to comparing the options, to reaching a preference-informed conclusion (Elwyn et al., 2017). The Netherlands has spent a decade institutionalising it, backed by government, the Patiëntenfederatie, the professional bodies, and the insurers. So this is not an imported ideal. It is the standard the field set for itself.

The third voice that should be in the room

Think about who is actually present when a diagnosis and a treatment get chosen. There is the clinician, with the training and the formulation. There is the protocol, with its options and its evidence. And there is supposed to be a third voice: the patient's own, carrying the one thing neither of the other two holds, which is what this particular life can bear and what it is actually for. Shared decision-making is the name for letting that third voice into the choice. So what happens when it is missing? The decision still gets made. It just gets made about someone rather than with them.

And how often is the third voice missing? On MIND's established position, drawn from its panel of more than 750 clients and family members, more than two in three respondents answered negatively when asked whether their provider had made clear agreements about establishing the diagnosis and choosing the treatment. More than 60% said it was never even made clear to them that a decision needed making. Sit with the order of that. Why does it matter which number comes first? Because you cannot use a vote you were never told you had. The standard's very first step, the one where the professional says "there is a choice here and your view matters," is the step most often skipped. And what was the patient holding while it got skipped? A preference? A fear? A whole life the protocol could not see? Whatever it was, it never reached the table.

The system's own measure agrees

You might reasonably wonder whether this is just the loud minority, the people who write to panels. So look at what the field measures on itself. The Consumer Quality Index for the ggz asks patients to rate their care across several scales, and shared decision-making and information are two of them, sitting right next to how respectfully they were treated. The instrument exists precisely because the field decided these things were worth counting (Akwa GGZ). And the pattern that comes back through patient-experience data is quietly telling: people rate the manner, the warmth, the being-treated-decently, near the top, while shared decision-making and information sit lower. Read that together and it says something specific. Patients do not feel unkindly handled. They feel kindly handled and quietly left out of the choice. The warmth is real. The vote is missing.

Is any of this getting better? Some of it, and the field is honest about the rest. In 2022, the same senior researchers who helped build the Dutch SDM project looked back over the decade and concluded that progress is real but uneven, that the standard has "not reached all patients," and that it was time to become inclusive to the people it was meant for (Van der Weijden et al., 2022). That is not a critic taking aim from outside. That is the field naming its own gap. The standard is agreed. The room, often, does not yet contain it.

So this is the shape of it. Shared decision-making is the third voice, written into the protocol, backed by the state, and most often absent from the moment it was made for. The patient is the one person in the room with no vote on their own care, and the data the field collects on itself says so.

This is the single thing Freudche does here. The Tussen gives the patient a place to put their own words between sessions, in their own time, when the thing they actually wanted to say has finally arrived. Those words travel into the room, so that when the next conversation happens the patient is present in it rather than groping for language on the spot. It does not make a decision and it does not share one. It surfaces the patient's own voice, in the patient's own words, and sets it where the choice gets talked through. The clinician still decides what to do with it, as they always have. What changes is only that the third voice has a way to be in the room when it matters, instead of arriving weeks too late, the way it did for the woman who only later found the words for what she had wanted all along.

She had wanted to be asked. Not to overrule anyone, not to second-guess the training across from her, just to be in her own decision while it was still being made. The standard says she should have been. The next patient who sits down in front of you has something they want to say about their own care, and most of the work is simply making sure they get to say it before the choice is closed.

Researched by Freudche.