Once again this year, I was fortunate to attend the annual Saks Institute symposium held at the University of Southern California’s Gould School of Law. The topic, fittingly enough in L.A., was mental illness in the movies. Several filmmakers were in attendance, as were a variety of others–some academics, some attorneys, some mental health professionals, and a variety of others, including family members and some NAMI advocates. My observations in this blog are made with the belief that those who participated in the symposium were some of the “best and the brightest” and in no way do I mean to be critical of their aspirations or devotion to the cause of helping move us beyond stigma and discrimination.
Since I’m not a great movie buff, I decided early in the sessions to listen in as if I were an anthropologist–good advice on participating in many such functions, as I’ve learned over the years. What struck me was the degree to which public discussions are shaped by two related categories of problems–first, there were ideas that I believe are misconceptions and second, positions that are shaped largely by a lack of important information, especially that which isn’t influenced by a profit-oriented corporate culture.
The misconceptions:
Schizophrenia and other “major mental health problems” are lifelong afflictions and must be treated with drugs. This assumes, to begin with, that schizophrenia and other disorders can be reliably and consistently diagnosed. And that they’re mostly illnesses. And that one never recovers. And that the drugs are effective. None of these assertions are consistent with unbiased longitudinal research data. Nor do these beliefs fit with the experience of so many people who have been so diagnosed and recovered to live full meaningful lives. It reminds me of my early but mistaken professional education that people with “schizophrenia” can never really establish mature relationships–at least we don’t teach that anymore, do we?
Drugs are pretty safe. One way of thinking about all drugs is that they are essentially poisons–this has been asserted all the way from the Greek physicians to our contemporaries like Dr. David Healy and Dr. Peter Goetzsche. The difference between a poison and a medication is that the risk/benefit ratio comes out in favor of the medication–but that doesn’t negate the fact that there are negatives, both short-term (side effects) and long-term. Again, research and personal experience shows that these drugs too often result in life-limiting outcomes like chronic low functioning and metabolic syndrome. There is also a type of chemical dependency reaction, i.e. a withdrawal syndrome, that often takes place when a person tries to reduce or go off the medications.
Regulators like the Food and Drug Administration protect us only after they carefully review all of the data. The reality is that much of the relevant data never makes it to the review process. Add to that the fact that many, if not most, of the regulators have ties to the pharmaceutical industry. Whether the FDA officials acknowledge these factors, it biases their work in favor of approving drugs. Another reality is that it takes only 2 positive trials to make a drug approvable by the FDA and these studies are usually funded by, shaped by and even written by ghostwriters of the drug companies. There is a movement now to make research data fully transparent so that regulators and advocates can be informed of the heretofore hidden outcomes. Finally, the positive studies, even if they are reasonably objective are normally designed only to demonstrate short-term effectiveness. The work of researchers like Martin Harrow clearly demonstrate that 1) the longer a person is on medications, 2) the larger their dosages and 3) the more medications at one time that they are prescribed, are all associated with poorer outcomes.
I heard several times that, “Well, medications are what patients demand.” But one has to ask if this is really the standard of practices that should be used–is it the standard that other medical disciplines use? For example, if I have the flu and say to my primary care physician that I want Xanax to make me sleep through it, would that make good clinical sense just because I demand it?
An underlying though unspoken assumption is that we do a good job of providing informed consent when psychiatric medications are prescribed. This is doubtful. Informed consent procedures are routine and bureaucratic and very little is addressed other than the risk of tardive dyskinesia–and on rare occasions, the risk of metabolic syndrome. I believe that fully informed consent would have to include an honest discussion of longitudinal studies and carefully constructed research findings that demonstrate the likelihood of poor long term outcomes for the usual pattern of prescribing psychiatric medications.
Perhaps the most common belief I heard was that chemical imbalances are the root causes of “mental illnesses” and that, in fact, we are dealing with illnesses or brain disorders just like heart disease or cancer. This misconception is usually accompanied by a belief that we are near discovering the genetics of these chemical imbalances–in spite of the fact that this search has been conducted for decades without any such results and that there is no laboratory test that can confirm or deny a chemical imbalance. If you read carefully the reports of studies that seek the neurobiological answers, they speak in carefully crafted phrases about the multiplicity of factors that are believed to contribute and that many more studies will be needed, i.e., we need more money. There were even statements that “trans-generational” genetic changes are caused by trauma, ideas that have an attraction because of the social impacts of genocide and slavery–but these are assertions that have no basis in research.
Finally, I listened to several individuals espouse the idea that electroshock treatment is safe and effective. This misconception ignores the fact that electrical currents must necessarily impact the brain and that these “treatments” cause brain damage which includes memory loss. Do we really understand what small electric currents do to the most delicate and in many ways least understood organ in the body?
Lack of Information:
The misconceptions described above can have several causes but they all have in common missing information–a lack of knowledge of research, emerging effective programs, and other important pieces of information. Here is my beginning list:
When I ask mental health professionals about their awareness of the classic long-term outcome studies conducted for decades by Drs. Martin Harrow, Courtenay Harding, Lex Wunderink and others, I almost always get a blank stare. This is more than a little discouraging. These well-constructed longitudinal research studies show consistently that people who get diagnosed with “schizophrenia” and other psychotic disorders do much better and their prognosis is much better than we’ve believed—especially if they can carefully reduce and avoid lengthy periods of time on psychiatric medications. When one digests these published reports, it seems highly inappropriate to keep using terms like “chronic mental illness” or “serious and persistent mental illness.” In fact, if I were to ever again be in a state mental health commissioner position (which I am clearly NOT seeking), I would immediately work on initiating a legislative discussion about whether these terms should still be used in statutes and administrative rules.
A related area of easily accessible knowledge is about the Open Dialog approach to working with youth and families experiencing a first psychotic or “extreme state” emergency. This type of supportive intervention has been used in Western Lapland, Finland, for decades—successfully restoring young adults to functioning in school and work in about 80% of the families served. Medications are sometimes used, but sparingly, and almost always for short-term emergency use. Adaptations of Open Dialog are emerging in the United States in at least 2 locations—Framingham, Massachusetts, and soon in Atlanta, Georgia. There are other similar programs in about 75 other communities—all of which should be better known and replicated because they too offer hope that major mental health challenges do not have to result in lifetimes of disability, illness and medication use.
Hearing Voices Network (HVN) meetings are still another area of a “black hole” in knowledge for most mental health professionals. Again, Western Europe is far ahead of the United States. In the UK, for example, these mutual support groups have been meeting for decades. People who participate find them much more useful than what the medical model provides. In addition to peer support, HVN meetings offer practical advice and skill-building to cope with and learn from what the medical model calls “auditory hallucinations.” Someday these meetings in the U.S. should be as common as 12-step programs for alcohol and drug addictions.
The rules used by the US Food and Drug Administration are structured to bias approval of medications with dubious effectiveness and even safety. As noted above, most people don’t know that it takes only 2 studies with positive outcomes—regardless of how many other studies have been buried on or not reported because they show negative outcomes. FDA requirements rarely consider long-term outcomes so that, combined with staff who often have ties to the pharmaceutical industry themselves, the approval of psychiatric medications does not have a strong track record of safety or effectiveness.
Finally, I would be amazed if 1 in 100 mental health professionals have any conception of the phenomenon of dopamine supersensitivity—the neurological counter-reaction to taking medications that interfere with the dopamine neurotransmitter system. Informed consent should go far beyond the customary superficial warnings about tardive dyskinesia and weight gain and include the reasons why psychiatric symptoms re-emerge when tapering or going off medications too quickly occurs. These “decompensations” are mostly likely a drug withdrawal effect, not the return of an “illness.”
I could make this blog longer by describing the minimal recognition of the role of trauma in producing far more “mental disorders” than the alleged genetic factors which are frequently referred to as causes. And I will refrain from talking about the lack of professional awareness of the reliability of diagnoses and the way in which the American Psychiatric Association has exploited this by expanding the number of diagnoses listed in each new edition of their Diagnostic and Statistical Manuals (DSMs).
Departing from anthropological observations and moving toward an ethical perspective, I think we should be chastened by the fact that the “treatments” portrayed in the classic “One Flew Over the Cuckoo’s Nest” were at least in part provided with the best of intentions though in authoritarian institutions—the real message of the movie. I have to wonder if someday the belief that prescribing drugs is the right thing to do for patients will be seen through the same kind of lens—well-intentioned but seriously flawed.
Robert Nikkel, MSW, is a Clinical Assistant Professor in the Public Psychiatry Training Program at Oregon Health and Science University. He was the State of Oregon’s commissioner for both mental health and addictions from 2003-2008. He is the director of the Mad in American Continuing Education project.
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