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What we can learn from Tucson and why not to overreact!

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         Like many, I have listened to the media coverage of the tragic shooting in Tucson.   This incident has inspired us to engage in important conversations about mental illness, gun control, political rhetoric, and access to mental health care in the United States.   It has also inspired some to offer "quick fixes" that disrespect the complexities of the issues.   Most disturbing to me has been the cry of some to undo our system of protection of civil liberties for those who are involuntarily committed, to more readily commit people who might be dangerous and to keep them under lock, and to force all mentally ill people to take medications.   These quick fixes ignore the complexities of the problem and threaten to erode the important steps that have already been made to care for people with mental health problems and to erode what we know about mental health, the prediction of violence, the usefulness of commitment procedures, the efficacy of contemporary medications, and the necessity of preserving patients' rights.   Of particular concern for me has been the absence of discussion about the importance of community in aiding those who suffer with mental illness and in preventing tragedies such as occurred in Tucson.

        I completely agree with Michael Craig Miller, M.D., Editor in Chief of the Harvard Mental Health Letter ( http://www.health.harvard.edu/blog/the-tucson-shooting-and-mental-illness/ , Posted January 12, 2011, 6:28 pm), who wrote, " I am not surprised at the outrage expressed in the news or at the impulse to blame. A quick scan of the news, however, shows there is not much agreement about whom to blame". The political debate flowing from this incident will continue, as will the endless cycle of blame and defensiveness. But I caution all of us -- and especially mental health professionals -- not to make clinical judgments about Mr. Loughner. Very few people will or should have access to the kind of information that would allow such judgments." In keeping with Dr. Miller's advice, I am not going to speculate on Mr. Loughner's mental status, but rather to address the reactive elements in this debate and to argue for the limitations of psychiatry and of medications, and to address our woeful lack of adequate psychosocial care in the United States, which might do far more to prevent violence on the part of the mentally ill, than the medications we prescribe.

        Lisa Dixon, MD, a Professor of Psychiatry at the University of Maryland and an expert on mental health services research (she appeared on CNN commenting on this issue), describes what has been learned about how to engage people who have chronic mental illnesses. She found that psychosocial interventions are at least as important, if not more important, than medications for improving quality of life and reducing harm.   Her group produced 8 treatment recommendations in the areas of assertive community treatment, supported employment, cognitive behavioral therapy, family-based services, token economy, skills training, psychosocial interventions for alcohol and substance use disorders, and psychosocial interventions for weight management. Her team concluded that a set of psychosocial treatments should be considered a basic package for systems of care for persons with schizophrenia.1In the community mental health center where I have been working part-time, psychosocial treatments are virtually non-existent.   The bias of the therapists appears to be that all that the people with diagnoses of schizophrenia need is medication clinic. We serve these people by seeing them every three months for fifteen minutes, writing prescriptions.   When they decompensate and are admitted to hospital, we blame the outpatient prescribers for not having them on the "right" medications, change medications, and discharge them, usually to the same absence of care as before.   Some do get psychotherapy for half-an-hour, twice monthly, which accomplishes very little. While there are some exceptions to this, such as two week long programs of half-day care (called partial hospitalization), some combined substance abuse and psychiatric treatment programs, and some programs for peer counseling and support, these are not the rule.   Within this system, we don't know people well enough to have much of a sense for how things are going for them, and most of them are suffering. I know this because in my practice, I have implemented the use of a simple, but reliable and valid instrument developed in the U.K. -" the MYMOP2 (my medical outcomes profile, 2nd revision).   This instrument asks people what two symptoms bother them the most and then asks the person to rate how severe these symptoms are on a "0" to "6" scale.   Then, they are asked to use the same scale to report the degree to which their symptoms interfere with their activities.   Finally, they are asked to rate their overall sense of wellbeing for the past week.   When asked do actually give a rating, fewer than 20% of my patients say they are doing well.   But of these who report not doing well, about 80% were described by my predecessor, during his med checks, as "doing well; no complaints".   Clearly we generally miss the degree to which our patients are still suffering despite medications.   In my own meager way, to challenge this lack of psychosocial care, I started a weekly "hearing voices group", which I described in previous articles (see www.futurehealth.org ) and which give those people who are already heavily medicated an opportunity to learn other ways to reduce the suffering imparted by their voices and visual experiences.   My efforts in this area, however, are largely seen as eccentric and are of little interest to others in the facility.   They are in constant jeopardy of being eliminated if the numbers attending don't produce enough income.

          Even though Mr. Loughner has not been formally diagnosed by anyone through direct interview and examination, many have assumed he must have a schizophrenia diagnosis (the immediacy of this assumption may be an affront to people with that diagnosis and may speak to their negative stigmatization).   Jeff Kass, for example, writing in The Huffington Post (Jared Loughner's Diagnosis, http://www.huffingtonpost.com/jeff-kass/jared-loughner-diagnosis_b_808944.html , posted January 14, 2010) states, "And the verdict is " schizophrenia."   He reviewed a variety of other "arm-chair" diagnosticians who agreed with him, including E. Fuller Torrey, the founder of the Treatment Advocacy Center in Arlington, Va., which advocates stronger laws to require drug treatment for people with severe mental illnesses, who said, "I'd say the chances are 99 percent that he has schizophrenia."   Another commentator on CNN responded to the Tucson tragedy by saying that all patients with schizophrenia should be immediately placed on medications and made to take them. He argued that the problem could be solved by creating more inpatient beds, easier involuntary commitments, and obtaining more community treatment orders (which force patients to take medications).

In my book, Healing the Mind through the Power of Story: the Promise of Narrative Psychiatry (Rochester, VT: Bear & Co., 2010), I reviewed the evidence for the efficacy of psychiatric medication in the treatment of schizophrenia and psychosis, which is not rosy.   This is not to say that I don't use medication, but rather, I see it as a means to reduce unbearable suffering than cure schizophrenia.   When we transform unbearable suffering to bearable, then the person can engage in the psychosocial therapies that will improve the quality of their lives.   Throughout my psychiatric career, I have been involved in psychotherapy with people diagnosed with schizophrenia, and am currently writing a paper about those who have recovered and are functioning well without medications.   This is a lengthy process that usually takes years, andis largely done for free, since rarely does insurance of any kind cover psychotherapy for people with psychosis diagnoses.   Recently, I found a similar paper from 2007 that I missed in my review in my book.   In this paper, Martin Harrow, PhD, and Thomas H. Jobe, MD, both of the Department of Psychiatry of the University of Illinois College of Medicine in Chicago, followed 145 patients who did not take medications and who were diagnosed with schizophrenia, for 15 years.2   They compared these people to other similar patients diagnosed with schizophrenia, who were treated with medications. They wrote, "A larger percent of schizophrenia patients not on antipsychotics showed periods of recovery and better global functioning (p < .001). The longitudinal data identify a subgroup of schizophrenia patients who do not immediately relapse while off antipsychotics and experience intervals of recovery". The current " data suggest not all schizophrenia patients need to use antipsychotic medications continuously throughout their lives."   Why does this matter?

           In Narrative Psychiatry, I described the CATIE (Clinical Antipsychotic Trials of Intervention Effectiveness) studies, a series of large, well-funded studies on patients diagnosed with schizophrenia.   In these studies, only 20% of patients were still taking medication at the end of one year.   Forty percent quit because of unacceptable side effects and another 40% stopped because the medication was simply not working.

             Others have made the case against the forced use of psychiatric medication better than me.   I have seen these patients, including those who have been permanently these meds.   It's a complicated issue, however.   I struggle with people to do what's best for them based upon their wishes. Some really are not safe without their medication.   Some want to be on it. I have committed people for their own safety or for the safety of others.   I have also worked with people who wanted to avoid medications and, in conjunction with their family, friends, and community, have collaboratively discovered ways to do that.  

           In my opinion, one of the most intriguing differences is other people.   I've noticed, for example, that isolated individuals rarely do well without medications. I have come to the conclusion that medication is often a substitute for community.   In my work on rural and remote aboriginal reserves in Canada, I saw people become psychotic and saw their community wrap collective arms around them, so that they recovered, often completely, over a matter of 6 to 12 months.   So I know it is possible.   The best sources for the arguments against compulsive medications are made by patients themselves at www.mindfreedom.org and in the critiques of Robert Whitaker, whose new book, Anatomy of an Epidemic (New York: Crown, 2010) comments on American psychiatry's almost universal reliance on medication.   However, I think assessment of violence and potential for violence is a separate question from forced medication.

A timely article whose preparation preceded the Tucson Tragedy recently appeared in the Harvard Mental Health Newsletter to summarize what we know about mental illness and violence ( http://www.health.harvard.edu/newsletters/Harvard_Mental_Health_Letter/2011/January/mental-illness-and-violence ).   The authors wrote, "Public opinion surveys suggest that many people think mental illness and violence go hand in hand. A 2006 national survey found, for example, that 60% of Americans thought that people with schizophrenia were likely to act violently toward someone else, while 32% thought that people with major depression were likely to do so. In fact, research suggests that this public perception does not reflect reality. Most individuals with psychiatric disorders are not violent."

         While some studies have suggested that people with mental illness, and particularly people with schizophrenia, have higher violence rates, much of this has been explained by substance abuse, which has been linked to greater violence.   One study in Pittsburgh found equivalent rates of violence for people living in the same neighborhood, whether mentally ill or not, after controlling for substance abuse.

         When I was a resident in psychiatry, I learned that a past history of violence was the best predictor of future violence, and that still appears to be the case.   In my observation (and in the research), regardless of other mental health diagnoses, those individuals who were diagnosed with conduct disorder as a child and who continue into adulthood to commit crimes and come to be diagnosed with antisocial personality disorder, are those most likely to commit acts of violence.   We can recognize these people, but they are often not psychotic.   I have encountered them in inpatient settings and they are quite different from the people with schizophrenia with whom I enjoy working.   Once, during an inpatient narrative therapy group in Tucson, my patients with the schizophrenia diagnosis begged me to discharge a man whom they could recognize was pretending to be psychotic.   "He's not like us," I was told.   "He's a killer.   We're scared of him."   Indeed, I later learned that he had faked psychotic symptoms to escape a drug deal gone bad and was lying low in the hospital until his antagonists forgot to be angry with him and moved onto other targets.  He put chills in me when he proudly described killing people and announced that I couldn't tell a soul since I was his psychiatrist.

Thus, there are frightening, dangerous people in the world who need to be separated from the rest of us, but while I wouldn't go as far as Thomas Szasz in divorcing psychiatry from legal proceedings, we should be more humble about our expertise, efficacy, and value.   I am not against detaining dangerous people when we can, but I'm not sure medication does very much to prevent them from committing crimes.   Most of my patients who have a schizophrenia diagnosis are not sufficiently organized to commit large scale acts of violence.   The worst I have experienced in the last five years with my population is a man who went into a pornography store while psychotic and punched a man who was buying videotapes at the counter.   He then agonizingly ran away and wasn't ever identified or apprehended, and apparently the man was fine, for nothing appeared in the news about violence in adult video stores.   He was taking his medication when this happened.

            This leads us to my concluding point.   I believe, we need community.   We need to be able to identify young people at risk and expose them to different role models, relationship possibilities, mentors, and stories about how to live and relate to other people.   I propose that we build programs for children who bully or who are violent or who are labeled with conduct disorder so that they can learn new stories for how to live and find different mentors who are not violent. We should do this while they are still children and young enough to change.   We need to incorporate the children with bad behavior into transformative experiences rather than isolate them in places where they can learn to be better criminals and learn more of the rhetoric of crime and violence.   

        For most of the people who are diagnosed with schizophrenia whom I know, "bad" behavior could, I believe, be best prevented by incorporating them into a community of people who care for each other and about them, providing them with opportunities to work, to have meaningful relationships with others despite their great fears and anxieties, and to teach them skills of living to reduce their frustration and sense of isolation and alienation.   This need not be a community of professionals. The people who attend my "hearing voices group" have been thrilled to find others who hear voices and to find a place to discuss the voices without shame or embarrassment.   Just this has been very helpful.   We have discovered together that, as one man said, "The voices can't make you do nothing.   They can't make you hurt yourself or anyone else.   They're just trying to trick you." I am helping them transform their identity story from being shamefully defective to being "explorers of extraordinary realities" and to learn how to tune out the bad voices and enjoy the good ones.   This is mirrored in a marvelous program in Finland called the Finnish Psychosis Project, which helps people with psychosis to progressively refine the story about who they are and how they came to be psychotic.   Over multiple iterations, they move from a story about aliens and brain implants and transmitters into more mundane stories about over-controlling relatives who try to run their lives for them. Through individual and family work, they transform and improve.   I reviewed these studies, and others, in my Narrative Psychiatry book, as well as presenting other examples from my practice on how this work unfolds.

Instead of building more inpatient beds, getting more community treatment orders, and involuntarily committing people, I propose that we use the Tucson tragedy to invest in more ideas like the Finnish Psychosis project.   I propose that we find ways to pull people like Mr. Loughner into dialogue and relationship instead of expelling them or rejecting them or telling them to go get help.   People told to get help rarely go.   Instead, wehould bring ourselves as help to them.   I propose that we become courageous enough to invite potentially disturbing people into safe communities rather than isolate and avoid them.   Isolation leads to more stigmatizing and more isolation and eventually even more disturbed behavior.

           For those people who suffer with schizophrenia, it could even be our communities. To borrow a phrase, it takes a village to embrace the different, odd an annoying. Too often we want to medicate for those reasons. To change this, we people who are not labeled need to build better skills to talk with those people who are labeled.   Specifically, ordinary people need to learn how to talk in a helpful to people who have psychosis, and vice versa, so that everyone becomes more comfortable.   We have to learn to reach out to them, to listen to them, and to respect them in the best way possible. I propose that we fund safe houses or sanctuaries for people who are psychotic where they can be safe and can find help without stigma or being forced into treatments they don't want.   Let's let this tragedy facilitate a movement toward this type of dialogue and understanding.

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Lewis Mehl-Madrona graduated from Stanford University School of Medicine and completed residencies in family medicine and in psychiatry at the University of Vermont. He is the author of Coyote Medicine, Coyote Healing, Coyote Wisdom, and (more...)
 

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