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How Our Healthcare System Fails Patients with Severe Mental Illness

Our healthcare system's response to patients with severe mental illness is neither rational nor acceptable
October 5, 2017 | Comments

This is a guest post written by Dr. Rachel L. Moster, M.D. Dr. Moster is an Assistant Clinical Professor of Psychiatry at Columbia University. 

Those of us who care for people with severe mental illness (SMI) are frequently reminded that adherence to prescribed medications is a major determinant of outcomes. Many studies have shown that SMI patients who don’t take psychiatric medication as prescribed are prone to relapse, hospitalization, and functional impairment.

Much research has been devoted to understanding the factors that increase poor adherence to medication and to methods of improving adherence.  Very little of this work, however, addresses the issue from the patient’s point of view: what is it like to stop psychiatric medications?

That is why the results of a recent study caught my eye. A collaboration between a company called Live and Learn Inc. and investigators from three universities surveyed 250 SMI patients who decided to attempt stopping taking their medications, usually because they were concerned about health risks associated with them. More than half of the patients succeeded in discontinuing their medications for at least a year, usually without any professional support. Few of them reported relapses or hospitalizations during that period.  To deal with withdrawal symptoms, which were frequently severe, these patients relied on self-medication and friends who had themselves stopped taking medication.

Although more than half of these patients characterized the original decision to start medication as collaborative with their doctors, only 45% said these caregivers helped them with the decision to stop taking medication. Nevertheless, 82% of the patients who stopped their medications were pleased with the decision to do so.

My concern for the patients involved in this study comes from two different places. First, I worry that asking people in a web-based interview if they are free of relapses may not yield accurate information. Just because 82% of these patients say they are well does not mean that 82% are really well. Very depressed or very psychotic patients, for example, may not recognize significant reemergence of symptoms and believe they are better off on no medication. It is hard to ignore the many studies that have shown the adverse consequences when SMI patients stop taking their medications.

On the other hand, I share the author’s’ concern that these patients seem to have been abandoned by the healthcare system. We are much better at putting people on medication than we are at taking them off. I am sure we could help many people discontinue their medications, but that would require doctors who are available to listen to their needs and see them regularly. That might spare patients from having to suffer through severe withdrawal reactions, as many of these patients did, and also provide better monitoring in the event things don’t go so well.

This study shows that patients often fear their medications and decide to stop them on their own. They suffer through withdrawal reactions, but often feel the attempt was successful. What should this tell us about our mental health care system? How do we keep an important study like this, despite its shortcomings, from being buried and ensure that some action is taken to provide SMI patients what they need?

In our perverse system, the only stimulus to improve mental health care access lately seems to be a mass shooting, despite the fact that people with mental illness are rarely the perpetrators of gun violence. Patients with SMI need to see their doctors. Communicating this obvious fact to the public and the mental health system seems a difficult task. While I am mistrustful of this study and do not believe it is the best methodology for understanding which SMI patients might be able to do well with less medication, I am grateful to the authors for calling attention to a grievous shortcoming in our mental health care system. It is sad and unacceptable that patients with any illness, including SMI, feel so alienated from caregivers that they see their only solution in going it alone and unilaterally discontinuing medication. We simply must do better.

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