Once a year I get to feel very hopeful about the future of care for people like my daughter who live with severe psychotic disorders. The University of British Columbia Faculty of Medicine sponsors an annual neuroscience conference focusing on psychotic disorders to update psychiatrists and physicians about new research and promising practices.
Though not intended for family caregivers like me, I've discovered through the years that it's actually pretty easy to register for this kind of conference as long as you're willing to pay the steep fees. Since this popular conference is usually full, I justify to myself taking up a seat because I distribute the latest news to a community of family caregivers with whom I regularly communicate. Since many of the family caregivers I know are actually providing the bulk of mental health care for their family member, they appreciate updates.
This year's conference mostly focused on programs addressing people trapped in treatment resistant psychosis. One clear message was that when these people receive intensive treatment in programs specifically designed for them, most of them do much better. Anti-psychotic medications are understood to provide the foundation upon which any other treatments can be added.
These messages were in direct conflict with the message that a packed audience at Vancouver's Unitarian Church recently received from journalist Robert Whitaker the author of the best-selling books Mad in America and Anatomy of an Epidemic. People leaving this event could easily believe that research demonstrates that people given the diagnosis of ADHD, depression, bipolar disorder or psychosis should stay away from medications that are suggested to them because these will often do irreparable harm to their brains.
Robert Whitaker does excellent work describing the egregious practices of the pharmaceutical industries and psychiatry's often unhealthy relationship with them. However, his extreme stance against the value of psychotropic medications is scary.
It's hard to find the logic in some of his ideas. For instance, he regularly references the groundbreaking research in the 1990s that demonstrated that schizophrenia is not the progressively worsening disorder it was assumed to be. By tracing people who left the Vermont State Hospital, researchers found that many adjusted well to community life and no longer even needed medication. This lack of need for medication by many people in later life is now well acknowledged. However, it's odd that in encouraging us to look at how well people with schizophrenia eventually did without the medications they had previously taken, Whitaker doesn't refer to his usual argument about the long term brain damage he thinks these medications cause.
Robert Whitaker's use of various research studies to support his beliefs has been carefully critiqued by research psychiatrist Dr. E Fuller Torrey. Whitaker and Torrey represent profoundly different ways of understanding and responding to severe mental illnesses or what Whitaker sometimes calls emotional problems.
One batch of research that Whitaker hasn't been interested in examining is the growing collection of studies demonstrating that psychotic people have a brain-based inability to understand that they are ill. This research is significant because if psychotic people aren't capable of understanding they are ill, why would we agree with human rights advocates who argue that all people must be free to refuse treatment?
At the entrance to Whitaker's presentation were various articles protesting the use of any involuntary treatment. Whitaker's beliefs about abolishing involuntary treatment are well represented in the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), the federal agency designed to support mental healthcare in the U.S. Torrey argues that this organization has actually harmed the very population it was designed to help.
Although SAMHSA has abandoned the most severely mentally ill, another U.S. agency, the National Institute of Mental Health (NIMH), has been vigorously promoting the kinds of brain-based research that is needed to improve their lives. Whitaker and his followers bemoan the transition at NIMH from its previous Freudian based belief systems. However, many of us are encouraged that the largest research organization in the world dedicated to mental illness has been opening up new topics. This research includes investigations about the cognitive deficits that frequently accompany schizophrenia. NIMH states that it is these deficits that are the biggest factor in the ongoing disability of this population.
One NIMH-funded project was presented at last week's UBC neuroscience conference. Dr. Sophia Vinogradov presented her recent research in which she utilizes computer delivered programs to improve brain functioning in people with schizophrenia. Vinogradov chose a difficult population; the mean length of illness of her subjects was 19 years. Intensive work with this population over 16 weeks led to much improved ability in a variety of cognitive functions necessary for daily life. Improvements included the ability to more accurately distinguish between experiences that have been internally generated from actual events that have occurred in the external world.
The UBC conference opened with a presentation representing a viewpoint that both Whitaker and SAMHSA choose to ignore. Erin Hawkes, who has a MA in neuroscience, lived in the hellish world of psychotic delusions for years. She experienced numerous involuntary hospitalizations. Although anti-psychotic drugs helped control her symptoms, she, like many others, couldn't understand that she really has schizophrenia and would stop taking her medications. Eventually she began to understand her illness and has been able to rebuild a sane, stable, and very productive life. Both in her memoir and various articles, Erin makes it clear that she would not be alive without involuntary treatment.
Even though the UBC conference was full of inspiring accounts of progress in better treating psychotic disorders, the public doesn't hear about this kind of research. And because both Canada and the U.S. lack public education programs about these illnesses, the general population is vulnerable to messages like those of Robert Whitaker. Any parents of a psychotic son or daughter who heard his recent presentation in Vancouver would want to keep their child far away from the early psychosis intervention programs that offer the best hope for recovery.