Author Robert Whitaker, who has become a darling of the anti-psychiatry movement because of his charges that anti-psychotic medications often do more harm than good, spoke over the weekend at the convention of the National Alliance on Mental Illness. More than 140 of you posted comments about Whitaker and the changing face of NAMI when I wrote in March 18th about how Whitaker had been invited to lecture at the convention and why his appearance marked a significant change from when NAMI strongly supported Dr. E. Fuller Torrey and his call for Assisted Outpatient Treatment laws.
Here are reports from Joe and Beth Meyer and from Diane Kratt who attended Whitaker’s speech and have been blogging for me about the convention. I also asked a consumer, who agreed to blog for me, to send me his views of Whitaker’s speech. I will post them when I receive them.
If you attended Whitaker’s presentation and would like to add your comments, please do! I would love to hear from as many of you as possible!
Two Sides of the Same Coin at NAMI by Joseph and Beth Meyer
We were surprised when we learned that Mr. Robert Whitaker was speaking at the NAMI National Convention in San Antonio and feared the session had the potential to become a firefight. Like any large group, the community of those impacted by mental illness has diverse opinions about a variety of issues. Robert Whitaker and many members of NAMI have what seemed like irreconcilable views on the use of anti-psychotic to treat a first episode of psychosis, due to disagreements about the balance of risks and benefits. Supporters of anti-psychotics, such as the Treatment Advocacy Center (TAC), often cite evidence that patient outcomes are worsened the longer psychosis goes untreated and that the unpredictable behavior by people with acute psychosis can put them and others into dangerous situations. Opponents of early anti-psychotic use, such as Robert Whitaker, claim that undesirable effects of these medications on the brain and metabolic functions may worsen the long-term outcomes of patients taking them.
Whitaker opened his presentation, The Case for Selected Use of Anti-Psychotics by saying “I think it speaks well of NAMI to have invited me.” He quickly added, “the standard of care is that if you have schizophrenia, you have to be on anti-psychotics immediately and remain on them for life.” However, based on what we have heard at the NAMI National Convention and elsewhere, a growing number of patients and their psychiatrists no longer accept as dogma the early and long-term treatment of psychosis with anti-psychotics. For better or worse, more patients and their doctors are questioning the immediate and permanent use of these medications. And, some of this questioning is certainly related to Robert Whitaker’s writing.
Whitaker said that when he began writing on psychiatric care for the Boston Globe in the last 1990’s, he believed that removing schizophrenia patients from their anti-psychotics as part of an experiment was unethical due to the potential harm it could cause. However, when he found literature showing that outcomes of schizophrenia patients in the United States had not improved in the 100 years, and that persons living with schizophrenia in developing countries were doing better than patients in the U.S., he began to question his beliefs. He found that early studies on withdrawal of anti-psychotic medication were based on abrupt discontinuations that typically led to a resumption of psychosis not always seen if gradual decreases in medication were attempted. Whitaker then showed a series of charts comparing the long-term outcomes of schizophrenia patients who had used antipsychotics to those who never used them or gradually discontinued them. According to the information he shared in his presentation, the lower the exposure to anti-psychotics, the better the outcome. He also mentioned “open dialogue” studies in Finland, where 80% of patients are able to functionally recover without long-term use of anti-psychotics.
Whitaker acknowledged that statistics he cited were not entirely unassailable, though he spent no time counterbalancing his statistics with specific shortcomings of the comparisons, which may be many—the failure of some studies to precisely stratify results by the severity of initial symptoms; a possibility that better outcomes in developing countries may be related to lower stress levels in agrarian societies with stronger family structures than seen in the United States today; the fact that intense services for patients in Finland are largely unavailable in the United States medical system; and the possibility of unknown factors impinging upon the results that were shared. To his credit, Robert Whitaker did acknowledge that we do not have definitive answers and said his point is that NAMI should work to clarify the meaning of these studies. Overall, Whitaker presented a fairly moderate position and acknowledged on several occasions that long-term use of antipsychotics is sometimes necessary and appropriate—even the open-dialogue treatment in Finland resulted in 20% of patients requiring continued treatment.
During a question and answer session, Dr. Fred Frese firmly commented that 7 of 10 respected professionals with schizophrenia still take anti-psychotic medications for their illnesses. Others in the audience pointed out that although Robert Whitaker’s presentation was moderate and left room for common ground, his blog is a home to virulently anti-psychiatry people whose views are irreconcilable with NAMI’s mission. Robert Whitaker responded that he intended the blog site to be a place where those who felt harmed by psychiatry could be heard, but that he also wanted it to be balanced by psychiatrists and psychologists with more traditional points of view.
Following Mr. Whitaker’s presentation, we attended The Medical Model Matters with Jeffrey Geller, MD, and attorney Brian Stettin presenting. The speakers represented the Treatment Advocacy Center (TAC), an organization that lobbies for changes in laws that support Assisted Outpatient Treatment (AOT). The Treatment Advocacy Center supports the view that court-mandated treatment is appropriate for a small subset of people with serious mental illness, specifically those with psychosis and a lack of insight into their illness (i.e., anosognosia) whose actions have made them a danger to themselves or others. Dr. Geller pointed out that resistance to taking medications is true across all illnesses, such as hypertension and diabetes, not just mental illness. But, mental illness is a specific class of illness with some enjoyable symptoms (i.e., hypomania in bipolar disorder) and anosognosia that can lead to tragedies. Geller stated “we are not prescribing medicines to individuals because they are marching to the beat of their own drummer.” He added, “we are in a pill-happy culture, but we don’t want to lose the ability to use medications because so many are used inappropriately.”
Mr. Stettin said, that in TAC’s view, allowing someone to be homeless due to their treatment resistance is inhumane, and that if a person’s illness causes the person to be unable to direct treatment, it should be mandated until the psychotic beliefs subside. TAC claims that broader hospital commitment guidelines are correlated with lower rates of homicide, greater inpatient access, and a higher quality of mental health systems for the community at large. Mr. Stettin argued that AOT is an appropriate program for a small subset of patients caught in the “revolving door” between hospitalization and prison or homelessness. It is not intended to be a coercive treatment, as it is sometimes called by its opponents—a judge has to be involved before it can be implemented and the intent is not to violate a patient’s civil rights. The bottom line about mental health services is that “if you build it, some still won’t come!”
Across these different perspectives, we saw speakers who care deeply about people with mental illnesses. Robert Whitaker stated that we share a goal of providing the best treatment for our loved ones. Our hope is that, even among those who have strong differences of opinions, we can come together and find common ground to better advocate for those who cannot advocate for themselves.
Robert Whitaker’s speech by Diane Kratt.
I ended my day with attending the controversial session given by Robert Whitaker on the case for selective use of antipsychotic medication. Although his entire presentation was grounded in published literature and research, feathers were ruffled as evidenced by the comments, questions, and nonverbal communication used by the audience members during the Q/A period of the presentation. Mr. Whitaker applauded NAMI for asking him to present on a topic that would challenge our current beliefs. It is his hope that NAMI will join him in questioning the current use of antipsychotics as a one size fits all cure. He is advocating for providers to allow for three groups to emerge regarding the use of the medication: none, short term, and long term. He cited studies which found concerns regarding a super sensitivity to dopamine as a result of long term use which can be damaging to a person’s treatment. He stated that there is a new movement to further investigate this possibility.
There is concern from some people, especially those who have had success from antipsychotics, that his view will cause an anti medication message to be voiced which could not only eliminate a treatment option but will also add to the stigma which already exists. It seemed that some people were not happy with the research he presented or felt there were limitations and variables not addressed. Another interesting point was made that insurance companies have limited the amount of time anyone can spend in a care facility so medication might be needed for speed and efficiency. Although Mr. Whitaker spoke about patients receiving psychosocial care for several weeks delaying the use of antipsychotic medication, I think that our current healthcare system isn’t set up for such a plan. If doctors listen to what he is presenting and decide to hold off on prescribing medication, we could be in a serious crisis because we don’t have the type of environment or care that would be needed as an alternative. It would take plenty of time and a different philosophy in place to prepare for such a decision. I wasn’t able to tell whether or not he really understood the seriousness of that predicament or how easily it could happen. It was not addressed in this presentation.
Thanks Joe, Beth and Diane for your observations.
Here are a few paragraphs from my March 18th, blog earlier this year that sparked so many comments.
NAMI has invited author Robert Whitaker to speak during an afternoon session at its convention June 27 to 30 in San Antonio. Whitaker’s most recent book, Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, argues that psychiatric medications are not only harmful, but in some cases can cause mental disorders.
Dr. Torrey criticized Whitaker’s book in a review that you can read here. More recently, blogger Susan Inman, expressed fears in a Huffington Post editorial that Whitaker’s views were harming individuals with mental disorders. Whitaker has his supporters and has developed an especially devoted following among consumer groups that question the “medical model” and Big Pharma’s influence. Here is a sample.
For me, this shift away from Dr. Torrey’s views and the welcoming of Robert Whitaker as a NAMI speaker reflects how NAMI’s membership — or at least its board of directors - has moved away from its traditional parental based roots. I would not be surprised if NAMI soon drops its long-standing support of Assisted Outpatient Treatment.
Whether you consider this shift a good or bad thing clearly depends on your individual views about such issues as AOT, medication, involuntary treatment, Dr. Torrey and Whitaker. The point of this blog is simply this: NAMI’s views are shifting.