Shared decision making in schizophrenia treatment

Shared decision making (SDM) is a model of clinical practice in which the prescriber and the patient choose treatment together, weighing the evidence, the patient's values, and the trade-offs of each option. It has been the standard recommendation in oncology, cardiology, and primary care for two decades. Its adoption in serious mental illness has been slower — partly because of historical assumptions about insight, partly because acute psychosis genuinely complicates joint decisions. The current evidence is clear that SDM is feasible and beneficial in schizophrenia care, with some adaptations for the realities of the condition.

What shared decision making actually involves

SDM has three core elements:

1. Information exchange. The prescriber explains the realistic options and their evidence base. The patient explains what they want their life to look like, what they have tolerated before, and what side effects they are willing or unwilling to accept.
2. Deliberation. Both parties consider the options together, often using decision aids, written summaries, or tools like CommonGround.
3. Decision. A choice is made, with both parties owning it. The decision is documented, and a follow-up plan is set.

The model contrasts with two alternatives: paternalistic care, in which the prescriber decides and informs the patient; and informed choice, in which the prescriber lays out options and the patient decides alone. SDM sits in the middle and treats the decision as joint.

Why it matters in schizophrenia

The medications used in schizophrenia have substantial trade-offs. One drug may control voices well but cause weight gain. Another may protect cognition but produce restlessness. A long-acting injection may simplify adherence but feel coercive to the patient. There is rarely a single right answer; the right answer depends on what the person values most. SDM is the only ethical way to make those choices.

Research consistently shows that SDM in schizophrenia is associated with better treatment satisfaction, better adherence, and stronger therapeutic alliance. A 2017 systematic review in the journal Schizophrenia Bulletin concluded that SDM interventions are feasible, acceptable to patients and clinicians, and associated with positive outcomes. NICE's schizophrenia guidance explicitly endorses SDM as part of care.

The myth of "lack of insight"

One historical reason SDM was slow to reach schizophrenia care was the assumption that "lack of insight" — a clinical term for not believing one is ill — meant patients could not meaningfully participate in treatment decisions. The current evidence suggests this was overstated. Even people who reject the diagnostic label often have clear preferences about side effects, daily functioning, and treatment goals. SDM can proceed on those preferences without requiring agreement on the diagnosis itself.

For people in active acute psychosis, decision capacity may be temporarily impaired, and treatment may need to proceed under less-collaborative conditions for safety. SDM is a model for the long arc of care, not for every moment in a hospital admission.

Tools that support SDM

• CommonGround — software developed by Patricia Deegan that captures patient goals, personal medicine, side effects, and concerns before each appointment.
• Antipsychotic decision aids — written summaries comparing different medications across efficacy, weight gain, sedation, and other trade-offs.
• Side-effect tracking apps — including Frida, that let patients bring data, not just impressions, to appointments.
• Peer support specialists — who often help patients articulate preferences before and during appointments.
• Psychiatric advance directives — legal documents that record preferences for use during periods when the person cannot speak for themselves.

What patients can bring to the conversation

Practical preparation makes SDM work. Before an appointment, write down:

• The three things in your life you most want to be able to do (work, parenting, sleep, sex life, focus, etc.).
• The two side effects that have been hardest in the past, and the one or two you most want to avoid this time.
• Your current goals — symptom-related and life-related.
• Anything you have learned about specific medications that worries or interests you.
• Specific questions about the trade-offs of any new medication being proposed.

What prescribers can bring

Good SDM requires prescribers who:

• Have time, or make time, for genuine conversation.
• Know the comparative evidence for the options being discussed, including head-to-head trials and side-effect profiles.
• Can present options in plain language and acknowledge real uncertainty.
• Are willing to be told no, and to revisit the conversation later.
• Document the decision and the reasoning, not just the prescription.

Where SDM is harder

SDM is genuinely more complex in three situations:

• Acute psychosis. Decision capacity may be impaired. Treatment may need to start under less-collaborative conditions; SDM can resume as capacity returns. Advance directives written when well are particularly valuable here.
• Involuntary treatment. Court-ordered medication or commitment fundamentally changes the power balance. SDM principles can still inform the conversation about which medication, what dose, and what additional support, even when the broader question is no longer joint.
• Time-pressured systems. Many community clinics give prescribers 15-minute medication checks. Real SDM is hard to fit into that. Tools like CommonGround can help, but systemic change is also needed.

SDM and the broader recovery framework

SDM is the clinical-practice expression of the empowerment dimension in CHIME and the person-driven principle in SAMHSA's framework. It is one of the practical mechanisms by which recovery values become recovery practice. A clinic that talks about recovery but never makes joint decisions with patients is not doing recovery-oriented care.

If your prescriber is not doing SDM

If your appointments feel like instructions rather than conversations, several steps can shift the dynamic:

1. Bring written notes. Specific questions are harder to brush past than general impressions.
2. Ask explicitly: "What are my realistic options, and what are the trade-offs?"
3. Ask for time: "Can I think about this and decide at the next appointment?"
4. Bring a peer support specialist or family member if your clinic allows it.
5. If the dynamic does not change, consider getting a second opinion or finding a new prescriber.

Further reading

For more on the broader recovery context, see CHIME, Patricia Deegan and personal medicine, and our piece on finding a good psychiatrist.

This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.