If a rose is a rose is a rose, where does schizophrenia reside in the garden of metaphors? Among the diagnoses for a mental illness, schizophrenia is perhaps the most dreaded, frequently misused by the media, and giving rise to fear and shame for patients and families.
That question engaged 75 psychiatrists and psychologists from more than 25 countries who zigged and zagged for a lively discussion in San Francisco when psychiatrists convened for their annual meeting. Schizophrenia has remained part of the medical lexicon while terms like senility have been replaced by Alzheimers, manic-depressive by bipolar disorder, and retarded by developmentally disabled.
Schizophrenia is consistently misused. It is not "split personality," "disharmonious," or "conflict." It is not a modifier to governments or political parties, nor is it reaction to sporting events, an engine driving the stock market, or a polarity of global warming. It is a classification of the Diagnostic and Statistical Manual (DSM) and of the international World Health Organization (ICD-11). And increasingly, it is understood to be a disorder with component parts, some genetic, some environmental, some chemically induced, affected by surroundings and culture, responding to a range of therapies and/or medication targeting neurotransmitters and receptors. Untreated, its symptoms can persist for a lifetime but how those symptoms are understood depends on the community and the culture, and what is valued by that society.
Within this context, Dr. John A. Talbott, past-president of the American Psychiatric Association, and former editor of Psychiatric Services kicked off the session saying he has gone back and forth over changing the word. Twenty years ago he would have said yes; today he's not so sure. Changing the word, he notes, without changing anything else "is ineffective."
One place where a name change has apparently worked is Japan. Schizophrenia in Japan was once called mind-split-disease" (Seishin Bunretsu Byo) but is now called "integration disorder" (Togo Shitcho Sho"). The treatment guidelines changed "under the framework of the vulnerability-stress model," writes Dr. Mitsumoto Sato. This has helped patients and families, and since 2004, when new guidelines were published, more cases have been diagnosed and treatments have changed. The stigma has lessened.
Calling for "more accurate, specific and acceptable terminology as part of broader efforts to reduce stigmatization," Dr. David Kingdon said patients and families preferred "stress sensitivity" because it helped explain symptoms more specifically than schizophrenia. Kingdon is a professor of psychiatry at the University of Southampton where the syndrome of schizophrenia, including negative and positive symptoms, early and late onset, figure in discussions about renaming with patients and their caregivers.
Other suggestions for change included "first break psychosis," "neuro-cognitive disorder," or "persistent formal thought disorder." Even the name of the medication was frightening to some, leading to one suggestion to call antipsychotic" drugs "thought stabilizers."
One idea about how to reshape the dual problem of services and stigma came from Dr. Lourdes Ladrido-Ignacio, Professor (emeritus) of Psychiatry, University of Phillipines. She recommended integrating mental health with the rest of health services, thereby breaking a dual system. This is underway in Malaysia and Mongolia, and provides a framework for drawing patients into the same formal and informal systems for caregiving that already exist in rural villages.
Previous renaming of diseases have ushered greater public acceptance, but this usually followed research leading to improved treatments for cancer, TB, and HIV/AIDS. Like schizophrenia, they once carried a stigma associated with treatment outcomes. And Dr. Haroon Rashid Chaudhry, head of the Department of Psychiatry at Fatima Jinnah Medical College, and Honorary Executive Director of Fountain House in Lahore, Pakistan, noted that schizophrenia conveys a permanency that bi-polar disorder or substance use disorders do not despite comparable relapse rates.
While many thought a name change premature, all were mindful that the DSM-V is in the last phase of revision, and scheduled for release in 2012.