Undue faith in evidence based treatment may lead to commitment orders

In a recent edition of  Huffpo, Marvin Ross takes on the recovery movement, in his blog post entitled For Some with Mental Illness, There is No Recovery.

Mental health advocate Lembi Buchanan of Victoria, B.C. released a new report called Emergence of the Recovery Movement: Are medications taking a back seat to recovery? She points out that the popular recovery model threatens to take centre stage at the expense of the urgent needs of the people diagnosed with severe and persistent mental illnesses such as schizophrenia and bipolar disorder. What sounds like a logical approach to the treatment of mental illness, recovery, is actually regressive because it does not focus on the evidence-based neuroscience of these brain disorders.

Read more here

Mr. Ross’s complaint about the recovery movement, is that “They reject the emphasis of the biomedical model of mental illness. Instead, they believe the patient is the expert on treatment rather than the doctor and that there is no need for clinical evaluation or evidence-based treatment. This model does not accommodate the needs of individuals with severe mental illness (3 per cent of the population) who may lack insight into their illness and are unable to make appropriate treatment choices.”

Dr. Mark Ragins, Medical Director, MHALA Village, stepped up to the plate with a detailed critique of Marvin Ross’s post.
Your argument is irrational: Because some people don’t recover, the recovery movement should be stopped.

No approach to anything requires a 100% success to be implemented. At best pills help about 70-80% of the time and we don’t urge stopping them because some people don’t respond to them. Not everyone learns in school, some people can’t read and some people can’t see or hear TV. That doesn’t mean schools, books, and TV shouldn’t be widespread.

There are some people for whom the recovery model seems a bad idea – people who are repetitively seriously dangerous, predatory people, people with severe brain damage or mental incapacity, and people incapable of any human relationships. This is a very different group and a much smaller group than the group this article discusses – people who don’t believe they have a biochemical illness, “lacking insight,” and people who won’t do what other people want them to do, “noncompliant”. Those two sets of people are failures of our existing medical system, not the recovery model. I spend my life focusing on working with precisely those people (low insight and compliance) in a recovery program and we have very high success rates including reductions of over 70% in homelessness, jailings, and hospitalizations, increases in independent hosing, family reunification, and working along with very low dropout rates. Those people (low insight and compliance) are the main group of people who will benefit from more recovery based programs, not a reason not to use recovery.

Misleading assertion 1: The recovery movement neglects people with severe mental illnesses. The core focus of the recovery movement is people with severe mental illnesses. It is people who have suffered the most loss and suffering in their lives who most need a person centered approach instead of an illness centered approach. For them mental illness is not just a medical condition needing medical care, it is a profoundly destructive experience needing recovery. Recovery is for people who don’t respond to just treatment alone, not for people who respond very well to treatment first. The vast majority of the recovery based strategies are specifically directed towards people with severe mental illnesses including – outreach and engagement, trauma sensitive inpatient treatment, housing first, harm reduction, motivational interviewing, integrated substance abuse treatment, supported housing, employment, and education, skills training and psychosocial rehabilitation, clubhouses, self help and consumer staff, building protective factors and resiliency, and strengthening families.

Misleading assertion 3: Recovery is anti-medication. Many people use medications as part of their recoveries, but they have a choice just like people with physical illnesses. If you have high blood pressure you may want to use pills, at least for awhile, and/or you may want to exercise or diet, or you may want to live with your condition and its risk of stroke and heart attacks because of side effects, or even just because you don’t like doctors. In contrast, anyone who doesn’t agree to take psychiatric meds “they “need for the rest of their lives” is labeled as “noncompliant” and shunned in our current system. Recovery favors a collaborative, goal driven, client driven approach to “using” medications, instead of a professionally driven, compliance based, symptom reduction based approach to “taking” medications. Many people who don’t agree they have a mental illness and don’t like following orders, can find their way to using medications to improve their lives if they have a psychiatrist willing to collaborate with them. In many cases it is the system that needs to be committed to helping the person more than the person needs to be committed to working with the system. Recovery is an improvement in accessibility and customer service. Dropouts go way down.

Misleading assertion 4: Recovery eliminates involuntary treatment. Most people in the recovery movement believe that involuntary treatment is occasionally absolutely necessary. However, most people presently treated involuntarily today, could and should be more humanely and effectively treated in voluntary, trauma informed, welcoming, accepting crisis programs that include consumer staff. It only looks like we have too few involuntary treatment resources because we have almost no recovery based voluntary treatment resources. None of the horror stories of desperate people being turned away by hospitals included those people being offered anything else as a meaningful alternative. Involuntary treatment, even when it is effective and necessary, is a violation of human rights, usually highly traumatizing, and destructive of relationships with the mental health system overall. So we shouldn’t use it for social disruption, poverty and homelessness, avoiding responsibility, or frustration by staff and family that someone is not doing what they’re told to do. There should be highly restrictive usage. Also having coercive power over someone else is corrupting and damaging to the staff, family, and society that uses it. Locked hospitals have a way of becoming dehumanized, burned out, hopeless places for everyone involved. Recovery programs have higher staff morale and hopefulness.

Irrational conclusion: Because we can find a heartwarming story of someone’s recovery that included involuntary treatment and medications, the present system is working and should be defended against the threat of the recovery movement.

Our present system is not “all bad” nor are the people working in it evil and unhelpful. Sometimes recovery does result from our current efforts. Everything we’re doing doesn’t need to be changed. (Sometimes recovery results from placebo too.) That doesn’t mean we should stop trying to improve things. We all deserve a better approach and system to work with. The recovery movement has developed better approaches and continues to learn and implement new strategies.

The recovery movement is actively fighting for positive reforms. Please join us.

Mark Ragins, MD
Medical Director, MHALA Village
www.mhavillage.org

novabird Lover of Life, Radical Centrist comments:  My daughter literally lost everything as untreated schizophrenia ravaged her mind over a period of years. She ended up sleeping on the streets because she was in psychosis and all of the women’s shelters kicked her out because her behavior was so out of control. She was in full blown psychosis for many months, a fact that was well known to the police department as she kept breaking the law. The police took her to the emergency room many times and the hospital repeatedly refused to admit her or treat her due to the fact that she has extreme lack of insight.

I went to a judge and got a court order and she finally got admitted and put on the anti-psychotic drugs she so very desperately needed. And she has continued to stabilize since that time.

You say that involuntary treatment is a “violation of human rights, usually highly traumatizing, and destructive of relationships with the mental health system overall”. And yet evidence based science tells us that the earlier the person can be treated with anti-psychotics, the better their chances for recovery.

Are you OK with the massive and permanent losses my daughter suffered due to the fact that she has extreme lack of insight and the local hospital saw fit to not provide the involuntary medical treatment she so very desperately needed? That is not a rhetorical question by the way. I would sincerely like an answer.

MarkRagins replies: 1) Was your daughter offered any meaningful assistance in the community that accepted her as she was, psychotic, and tried to form a relationship with her and help her with her goals, even if they were irrational – for example, housing first, voluntary crisis housing, peer outreach and support, quality of life community policing, drop-in-serivces, charity, benifits assistance? If not, I’m not “OK” with that.

2) After all of that and more is tried and failed and if there is acute danger (and I assume there was since the judge granted your order), I’m “OK” with involuntary treatment even with it’s massive downsides, if it’s trauma sensitive and used to engage in voluntary recovery-based services before discharge,

3) What family services and supports were you offered to you?

BTW It’s hard to distinguish between correlation and cause in early intervention studies. Many people who take a long time to engage in treatment have significant risk factors that impact their outcomes in additon to not taking meds. Many places are now using intensive psychosoical interventions with first break psychosis instead of jumping straight to meds to build relationships and coping skills and avoid antagonizing people. Also it’s unclear whether meds themselves may have long term negative effects.

I hope, in addition to stabilizing, your daughter is now recovering.

Mark Ragins

The evolving nature of the recovery/liberation movement

Seth Farber has written a brilliant Op-Ed post today at the Mad in America site. Szasz and Beyond: The spiritual promise of the Mad Pride Movement 

It’s a very long read, but well-worth the time for anyone interested in the history and theories of madness and its movements, and the great names  i.e. Thomas Szasz, R.D. Laing who have contributed, often by the force of their own personalities, to shaping our beliefs about sanity . According to Farber, we are in the second phase of the movement, the phase where the movement no longer cares to strive towards socially sanctioned “normal.”

The Politics of Experience was in effect the first Mad Pride manifesto of the 20th century. But it was 35 years ahead of its time. There was no mad pride movement then that invited Laing to become the theoretician of a mad revolution. The mental patients liberation movement that emerged in the 1970s was focused on gaining equal rights and on ending coercive treatment. Laing did not take much interest in this. What was the point of integrating schizophrenics into an insane and self-destructive society? As Laing became a new age speaker, pioneer of innovative therapy and advocate of the individual mad person, Szasz accepted graciously the role of the theoretician of mental patients’ liberation, a movement that demanded equal rights for the psychiatrically labeled—and reform of the mental health system– but did not seek to otherwise change society. Szasz’s libertarian capitalism was tolerated grudgingly by patients’ who tended to be left-wing and who often remained, at least temporarily, dependent on the government’s financial help of which Szasz disapproved. Although many patients had been influenced by Laing, his ideas were not incorporated into the movement. Why? In this initial phase of the movement the emphasis was on the similarity between so-called schizophrenics and normal people. Laing’s emphasis on their distinctive albeit admirable traits was only an obstacle to the movement. Former patients wanted to demonstrate that they were as rational as “normal” people. (This was similar to the black and gay movements for equal rights which in their initial phases tried to be as conventional as possible.) One of the former leaders of the patients’ liberation movement whose story was recounted in my first book became enraged with me when I told him I was writing a book about Mad pride. “If you call us mad they will view us as irrational” he protested. But by then the younger generation was ready for mad pride, and tired of trying to seem normal.



The social consequences of “insight” and rumination

I’ve made lots of mistakes along the way with Chris, and one of them, in the early stages, at least, of his “officially diagnosed illness,” was getting caught up in negative thinking patterns. I attribute this to the dismal diagnosis, being counseled by mainstream to see the “illness” in medical terms, and interaction with dismal doctors. All of these factors influenced me to dwell negatively on Chris’s future. The purely medicalized view of this “illness” has huge impact on the patient and how s/he is treated by family members.  If I was influenced to adopt negative thought patterns, consider what happened to Chris. People do much better where families behave as if they are not particularly concerned/worried about them. It’s a skill one can learn. Also, think about the message given out by families who are convinced that their relative lacks “insight” into his own condition. “If only they were as worried as I am, they would know they are mentally ill.”  This is called “insight” from the point of view of the relative. The relative assumes that, armed with this “insight,” the patient will learn to take better care of himself, to avoid future relapse.

This research article suggests that “insight” (believing you are mentally ill) and rumination is associated with depression and negative self-appraisal in people with chronic schizophrenia.

Abstract
Rumination, Depression, and Awareness of Illness in Schizophrenia
Neil Thomasa1 c1, Darryl Ribauxa2 and Lisa J. Phillipsa2
a1 Monash Alfred Psychiatry Research Centre and Swinburne University, Melbourne, Australia
a2 University of Melbourne, Australia

Background: Depressive symptoms are common in schizophrenia. Previous studies have observed that depressive symptoms are associated with both insight and negative appraisals of illness, suggesting that the way in which the person thinks about their illness may influence the occurrence of depressive responses. In affective disorders, one of the most well-established cognitive processes associated with depressive symptoms is rumination, a pattern of perseverative, self-focused negative thinking. Aims: This study examined whether rumination focused on mental illness was predictive of depressive symptoms during the subacute phase of schizophrenia. Method: Forty participants with a diagnosis of schizophrenia and in a stable phase of illness completed measures of rumination, depressive symptoms, awareness of illness, and positive and negative symptoms. Results: Depressive symptoms were correlated with rumination, including when controlling for positive and negative symptoms. The content of rumination frequently focused on mental illness and its causes and consequences, in particular social disability and disadvantage. Depressive symptoms were predicted by awareness of the social consequences of mental illness, an effect that was mediated by rumination. Conclusions: Results suggest that a process of perseveratively dwelling upon mental illness and its social consequences may be a factor contributing to depressive symptoms in people with chronic schizophrenia.

Keywords:

schizophrenia; psychosis; rumination; post-psychotic depression; insight

Dear Abby’s advice to “Hearing Voices in Illinois”

DESPITE TWO SUICIDE ATTEMPTS, FAMILY INSISTS WOMAN IS ‘FINE’
11/19/2012
DEAR ABBY: I’m a 40-year-old woman, diagnosed with schizoaffective disorder after two suicide attempts. I have tried to get my parents and siblings to attend a session with me so they would understand my diagnosis, but all I hear is, “You don’t need all those drugs. You’re fine — just a little different than the rest of us,” and, “You have always been ‘odd’ and we like you that way.”
I have given up trying to get their support, but my gifted 14-year-old nephew has been asking questions about my diagnosis. I’m not sure how much to tell him, especially about the suicide attempts, one of which landed me in the hospital.
Any advice about what I should tell him and how to get family support? — HEARING VOICES IN ILLINOIS

DEAR HEARING VOICES: Tell your nephew the truth. If he is as intellectually gifted as you say, he will go online and start researching. Explain that your condition can be overwhelming at times, which caused you at one point to try to harm yourself, but that it is kept in check with medication.
Your relatives may be reluctant to admit that there is a mental illness in the family, which is why they refuse to allow your psychiatrist to confirm it. However, you may be able to find support from NAMI, the National Alliance on Mental Illness. With 1,200 affiliates, NAMI provides grassroots, self-help groups for people with mental illness and family members who are affected by it.

The website is www.nami.org and I hope you will check it out. The organization was established in 1979, and it may be able to help you get through to your family that your problems are not imaginary.

Here’s what SRK at Refusing Psychiatry without Pissing Off the Neighbours has to say about Dear Abby’s advice.

Trashing Dear Abby (again)

Jeanne Phillips, 70-year-old daughter of the original Abigail Van Buren, Pauline Phillips, has always told almost everyone who writes to her to see a psychiatrist as the “common-sense” solution to whatever problem they are having.

Today, her omnipresent Dear Abby column inadvertently reveals the obnoxious agenda of all psychiatric shills, particularly so-called “family support” groups like NAMI.

Abby sagely suggests to a writer she calls “Hearing Voices in Illinois” that the only reason her family might think she doesn’t need psych drugs is that they’re “reluctant to admit” what Hearing’s psych would confirm — that in fact, there is a mental illness in the family.

In other words, if the family weren’t so irrationally prejudiced against people with diseases of the brain as opposed to the heart, kidney or stomach, then they’d surely see the obvious logic of taking drugs which reduce your life expectancy by twenty-five years and do virtually nothing to help you.

Abby speculates that Hearing’s nephew could go online to research mental illness since he is gifted. She presumes that this gifted nephew will clearly see the truth — that the orthodox, hyper-medicalized view of all human problems absolutely must rule.

Families are only to be respected when they tell people to take psych drugs. If they tell people not to get “treatment” then they’re wrong, and they deserve no respect. That’s the way NAMI has always operated. Today’s Dear Abby just takes the implication to a more obvious, blatant and pedestrian level.

Read the rest of the SRKs post here.

Should relatives buy into the diagnosis, as Hearing Voices in Illinois wants them to do? Would this help or hinder the relative to get better (getting better is not something that “Hearing Voices” seems to set as a personal goal).

Chicago doctor accused of taking kickbacks to prescribe clozapine

In 2007 he prescribed various medications to 4,141 Medicaid patients, including more prescriptions for clozapine than were written by all the doctors in Texas put together, Medicaid records show. Records also showed he was getting government reimbursement for seeing an improbably large number of patients.

Doctor accused of taking kickbacks to prescribe anti-psychotic drug


Staff report

3:42 p.m. CST, November 15, 2012

A federal lawsuit accuses a Chicago psychiatrist of getting illegal kickbacks from pharmaceutical companies and submitting at least 140,000 false claims to Medicare and Medicaid for anti-psychotic medications he prescribed for thousands of mentally ill patients in nursing homes.

Dr. Michael J. Reinstein also submitted at least 50,000 claims to Medicare and Medicaid falsely claiming he had provided “pharmacologic management” for his patients at more than 30 area nursing homes and long-term care facilities, according to the health care fraud lawsuit filed by the U.S. attorney’s office.

“This is the largest civil case alleging prescription medication fraud against an individual ever brought in Chicago,” said Acting U.S. Attorney Gary S. Shapiro.

Reinstein was the subject of an investigation by ProPublica and the Chicago Tribune in 2009 that found Reinstein, 69, had compiled a worrisome record of providing assembly-line care with a highly risky drug.

Searching publicly available documents, reporters discovered that Reinstein had been accused of …………………….

read the rest here

After reading this article, I have several questions not specifically connected with this particular case: Why are mentally ill people in nursing homes in the first place? Warehoused by their families? Disabled by years of drug use? A special arrangement with Medicare/Medicaid? Are old people considered mentally ill by definition? Is dementia considered a mental illness? And, I can’t believe that clozapine, as stated in the article, is taken by 4% of patients. I bet the figure is much higher. Clozapine has been widely touted, since the time of the  CATIE study, at least, as the greatest thing since sliced bread. There are many shameful aspects to this newspaper report. 

Schizophrenia Commission not re-thinking schizophernia label

Louise Gillett writes about Rethink Mental Illness Members’ Day and other matters in her most recent post. Status and the status quo, continue to be alive and well in England, like they are in so many other countries where official “commissions” are established to preserve the status quo. Shame, shame!

Here’s an excerpt from Louise’s blog, Schizophrenia at the Schoolgate:

I suffered a major disappointment yesterday – I learned that the Schizophrenia Commission have not recommended that the label be abolished or changed as I had hoped.  (The report is not due to be published until next week but I feel no sense of loyalty that would prevent me from publishing this ‘spoiler’). 

I was not actually surprised to find out that the label has not been changed – I suspected as much by the fact that after asking me to write a case study (of my own case) I was asked if I would mind if it was ‘tweaked’ to reflect the fact that some members of the Commission do not agree with my view of the damage done by the diagnosis of schizophrenia.  After some thought I rejected my instinct towards compliance and wrote back to say that if they did use my case study I would prefer the wording left intact.  They agreed to use the case study as I wrote it, and apparently it has been included in the report (although I think anonymously.  I am not sure, I have not seen it, but one of the other Trustees who I spoke to yesterday dropped a big hint to this effect).  Although of course, it might be removed after I have published this blog post!

So I had an inkling of what the outcome of this report would be – and it was confirmed as soon as I saw the title of Robin Murray’s*  talk at the meeting yesterday – ‘What next for the Schizophrenia Commission?’

So the Schizophrenia Commission will continue – having already let down the people they are supposed to be helping.

I am staggered that they haven’t effected the change.  Robin Murray was questioned on the subject by a member of the audience and he couldn’t produce a coherent reply – he stuttered and stumbled over the issue, saying there were differing views, even claiming that, ‘The Schizophrenia Commission doesn’t have the power to say one way or another’ (really, Sir Robin?).  Eventually he told us that although the diagnosis had been changed in some countries it wasn’t going to happen here at the moment, but that maybe in a few years time, things would be different.

_________________________
Rossa’s comment: Do we think this guy’s going to change the system?

Robin Murray

From Wikipedia, the free encyclopedia

Sir Robin MacGregor Murray (born 1944) is professor of Psychiatric Research at the Institute of Psychiatry (Kings College, London, United Kingdom).[1] He also sees patients with schizophrenia and bipolar illness at the South London and Maudsley NHS Trust. He is originally from Glasgow. Murray is part of The Psychosis Research Group, one of the largest outside the United States. It uses a range of methods to improve understanding and treatment of psychotic illnesses, particularly schizophrenia. For the decade from 1997 to 2007, Murray was ranked as the 8th most influential researcher in psychiatry by Thomson Reuters’ Science Watch[2] and 3rd in schizophrenia research.[3] In 1994 he was the president of the European Association of Psychiatrists; now the European Psychiatric Association. He is a Fellow of the Royal Society (elected 2010) and also a Fellow of the Royal College of Psychiatrists.[1] Murray is co-editor-in-chief of Psychological Medicine.[4] In 2009 Murray had a public disagreement with David Nutt in the pages of The Guardian about the dangers of cannabis in triggering psychosis.[5] Murray previously wrote that while the risk increase is “about five-fold […] for the heaviest users”, the issue has become political football.[3] Murray has commented repeatedly on these issues in BBC articles and programmes,[6][7][8] including in a Panorama documentary on BBC One.[9][10] He has also been critical of the proposed use of cannabis for its anti-depressive effects as a “very big leap of faith” based solely on preclinical data.[11] Murray was knighted in the 2011 New Year Honours for his services to medicine.[12]

The scientifically demonstrated effects of qi on the human body

Here’s a YouTube clip showing demonstrable, measurable evidence of the effects of qi  on the human body. Austin Goh teaches human energy healing and is a master of Wing Chun kung fu.
Pier Rubesa is an independent researcher looking into the practical uses of sound waves in living systems as the basis for diagnostic schemes therapeutic systems and their interaction (bioharmonic research).

Chris and I were clients of Pier’s. You can see the room where, over the course of a year, Chris was treated by Pier using the same technology. The difference is that in this video, human touch, not sound waves, is the medium being manipulated to bring about changes in the body. If you look closer at the video you will see speakers situated at various points in the room. In a sound therapy session, Pier introduces pure sounds that vibrate to the individual colors of the chakras. The machine picks up the body’s reactions to the sound or the touch through sensors that are placed under the mattress.

Here’s a link to some of the posts where I discussed the sound therapy. (Note: Chris was quicker than most to achieve an out-of-body experience.) If you wish to read more, just put “sound therapy” in the search bar.
http://holisticschizophrenia.blogspot.ch/2009/11/holistic-explanation-of-out-of-body.html
http://holisticschizophrenia.blogspot.ch/2009/12/desert-matrix.html
http://holisticschizophrenia.blogspot.ch/2009/11/myths-are-public-dreams-dreams-are.html

Will Hall on extremism

Will Hall, author of The Harm Reduction Guide to Coming Off Psychiatric Medications, has articulated my thoughts on the dangers of the pendulum swinging too far in either direction. We’ve experienced the one extreme (the biochemical model) of being told that psych meds are the only solution for brain “disease,” that medication is normally forever, and that side effects are tolerable and manageable. The growing backlash to that extreme rightfully came about because truthful information was being withheld. But there are now a lot of people working to force the pendulum in the other direction, the one that promotes the idea that medications to treat distress are more dangerous than they are in many cases, that mental illness will go away if people would only get off their meds. A lot of the recovery movements complaints are with how psychiatry has abandoned the nurture of the psyche, therefore perhaps we over-vilify the meds — the most obvious thing psychiatry does do these days. (It’s an easy target.)

I agree with Will, that we are in danger of creating a backlash if we don’t take a more balanced approach. (Remember, we want the pendulum to swing disproportionately on our side for as long as possible.) One way to avoid the backlash is to be careful not to replicate the mistake of withholding or denying information that doesn’t fit our sometimes simplistic view of getting on or off the drugs.

In the comments section to his post, Will writes:

I think, in our efforts to alert the world about the dangers of psych drugs, we sometimes overstate the case. Psychiatry has erred for so long in favor of meds, we shouldn’t make the opposite mistake by exaggerating the dangers of drugs.That is not to deny that people are killed and seriously damaged by medications, but if we express only these accounts we are distorting a complicated picture.

What I am seeing these days is people and families who read Bob’s work and think that getting off meds is the solution. Often it is, like a magic bullet in reverse. Sometimes it’s not. I fear if we promote coming off meds, we are setting ourselves up for a backlash just like is happening now to those who promoted taking meds. Maybe a smaller backlash, and maybe the overarching message is better, but I’d rather be honest at the outset.
Will Hall is always worth reading. He knows his stuff and he’s willing to admit what he doesn’t know, and that people and situations are complex. Here’s the link to his post at the Mad in America site.