Embracing patient choice

As a researcher, doctoral student and service user (with a diagnosis of schizophrenia), I commend Morrison and colleagues ¹ for their brave and timely editorial. In addition to the adverse effects they mention, a small but robust literature attests to the often overlooked impact of subjective or psychological side-effects on service users’ quality of life and ability to pursue meaningful, socially valued roles (e.g. Awad & Voruganti, ² Deegan, ³ Jones, ⁴ Roe & Swarbrick ⁵ ).

In a focus group project on medications and treatment engagement that I recently completed, many service users reported that, in their experience, treating psychiatrists almost always refuse to even see patients who decline pharmacotherapy. Likewise, help with coming off medications is rarely available from medical professionals, leading to the deeply ironic fact that virtually the only comprehensive guide to psychotropic medication discontinuation widely available in the USA is the non-academic, activist-published Harm Reduction Guide to Coming Off Psychiatric Drugs. ⁶ Similarly, I have yet to meet an American service user with a diagnosis of psychosis who has ever been actively offered targeted intermittent (v. continuous) treatment. Clearly, research documenting the representative ‘real-world’ availability of treatment choices and alternatives, as well as the actual extent of autonomy support in psychiatric settings (or the lack thereof), is urgently needed.

As things stand, ‘choice’ and ‘self-determination’, at least in the USA, often appear to involve little more than the choice between a variety of antipsychotics and other psychotropic medications. As Morrison et al suggest, it is high time we began to take the profound heterogeneity of treatment response, outcome and symptom trajectories, as well as individual needs, preferences and risk assessments, seriously.