The three most harmful fads in psychiatric diagnosis, during the past 20 years, have all occurred in kids. Rates of Attention Deficit Disorder have tripled and rates of Autism and childhood Bipolar Disorder have multiplied an incredible 40 times.
Powerful external factors have contributed greatly to this massive mislabelling of kids. For ADHD and kiddie Bipolar, drug companies misleadingly and aggressively sold the ill to peddle their expensive and profitable pills. Their marketing strategy was based on the cynical assumption that starting a kid early on pills might make him a customer for life.
The explosion of Autism resulted from the combination of two things- the DSM-IV introduction of a much milder form (Asperger's) and the far too close linkage of the diagnosis to eligibility for enhanced school services. DSM diagnoses developed for clinical purposes are inappropriate gatekeepers for allocating educational resources. Educational decisions should be based on the child's educational need, as assessed by educators, using educational tools.
It is long past time to tame the wild DSM over-diagnosis of kids. Juan Vasen and Gisela Untoiglich are leaders of the Forum Infancias*, an Argentine organization of mental health workers dedicated to the proper diagnosis and treatment of children and adolescents.
Drs Vasen and Untoiglich describe ten reasons why psychiatric diagnosis is much more difficult and uncertain in youngsters and how rampant mislabelling leads to over-medication and unnecessary stigma. They write:
"Special care and caution are always advisable when diagnosing kids for the following ten reasons:
1) The roles and behavioral expectations of children and adolescents have changed dramatically throughout history, and also vary dramatically across different societies in the current world. It is not necessarily an indication of mental disorder when a child doesn't fit into societal or educational roles that are recent, constraining, and quite narrowly defined.
2) Children and adolescents vary dramatically in the way they develop and in the chronology of their developmental milestones. Individuality and immaturity should not be confused with disease.
3) Problems that are really most properly blamed on defects in the educational system are instead often blamed on problems originating in the individual child. We would have many fewer children diagnosed with Attention Deficit Hyperactivity Disorder if class sizes were smaller and schools provided more physical activity recesses for children during the school day.
4) Parent and teacher perfectionism, and the desire for bland conformity, has narrowed the range of what is accepted as normal childhood behavior and has devalued diversity. We should not medicalize difference.
5) Whenever having a psychiatric diagnosis is made a requirement for obtaining special school services, the rate of dagnosis goes up dramatically and inappropriately. This may give the child a short term educational advantage, but saddles him with long term stigma and reduced expections and risks inappropriate medication prescription.
6) Biological reductionism has falsely assumed that all troubling childhood behaviors result from a chemical imbalance in the brain. Ignoring psychological, social, and educational factors leads to unwarranted medicalization and excessive diagnosis and treatment.
7) Accurate diagnosis in children and adolescents takes a great deal of time in each session and often many sessions over a number of months.
8) It is easy to give a diagnosis, often hard to erase one. if you choose a wrong name, the child will be forced to walk the wrong road.
9) In our country, laws and regulations are frequently written related to one or another specific psychiatric diagnosis. This often results in an increased rate of that disorder and excessive, misguided treatment.
10) Diagnosticians do not have a crystal ball. Often, only time will tell. Diagnostic uncertainty in kids is so great that labels should always be written in pencil."
Thanks so much, Juan and Giselle, for your poetic way of cautioning clinicians to be conservative, never careless or creative, in diagnosing kids. Mislabelling has serious and often longstanding consequences on how the child sees himself, how the family sees the child, and on the misuse of medication. Diagnosis should never be taken lightly.
Two previous blogs offer supplementary reading that I think will be very useful for clinicians, parents, and teachers.
Laura Batstra described her method of 'stepped diagnosis'. If clinicians take the time to really get to know the child and family they will make many fewer, and much more accurrate, diagnoses.
And Dave Traxon provided a checklist of the important things every clinician must consider before prescribing psychiatric medication for kids.
Accurate diagnosis in kids is really tough and time consuming. Misdiagnosis in kids is really easy and can be done in 10 minutes. Accurate diagnosis in kids leads to helpful interventions that can greatly improve future life. Misdiagnosis in kids often leads to harmful medication and haunting stigma.
The stakes are high and the harms sometimes permanent. The best way to protect our children is to respect their difference and to accept uncertainty. I really love the idea of writing psychiatric diagnoses in pencil. #
Forum Infancias Board is integrated by Beatriz Janin, Juan Vasen, Gisella Untoiglich, Miguel Tollo, Mabel Rodriguez Ponte, Gustavo Dupuy, Elsa Kahansky and Rosa Silver
Brain research may be the greatest scientific adventure of our time, but it has had no practical payoff for the mentally ill. We have learned fantastic things about what makes us tick, but none of the findings has helped a single patient.
The National Institute Of Mental Health is betting billions of dollars that useful answers are just around the scientific corner. My guess is that if there were low hanging fruit, we would already be picking it.
Progress in understanding and treating mental disorders will be slow and piecemeal. Don't hold your breath waiting for breakthroughs. With its 100 trillion connections, the human brain is the most complicated contraption in the universe. Things can go wrong in lots of different ways. The more we learn about mental disorders, the further we seem from really understanding them.
The fascination with brain research has in fact been paradoxically bad for patients. Its future promise distracts attention from their pressing current needs. Vast amounts of money, time, and talent are devoted to the high tech stuff, while the simple things that would make their lives livable are terribly shortchanged. We could, but don't, provide a decent place to live; caring people to live with; and easy access to treatment.
The rest of the civilized world does a much better job of caring for the mentally ill. Some places- Italy and Scandinavia- do an especially great job. The US is a disgraceful laggard- hundreds of thousands of mentally ill in prison, hundreds of thousands homeless.
We don't need more research into what to do. We just need to have the heart, will, and funds to do it.
Virgil Stucker has been living with and for the severely mentally ill all his adult life. Perhaps better than anyone he can tell us what works. Virgil was founding Chairman and President of the Foundation for Excellence in Mental Health Care and is currently the founding Executive Director and President of CooperRiis Healing Community.
Virgil writes: "Too often, we have thought that only 'rocket scientists' could understand the vagaries of the mind, heart, brain, and soul. We need the scientists, but, first and most; we need people who understand the healing power of relationships and engagement in community.
"For forty years, my wife Lis and I have lived in four different therapeutic communities, where we raised our children and host our grandchildren. Our youngsters grew up among the residents (diagnosed with schizophrenia, bipolar disorder and depression) who ate at our table and shared in our lives.
"I am reminded of a meal when our young Christoph was puzzled about his friend Ed at the end of the table who was wearing his depression with head down. Christoph crawled under the table, looked up into Ed's eyes with a chuckle and Ed soon lost his depression. I remember another time when Christoph wandered too close to the river and fell in. One of the residents jumped in and saved his life.
"Now that they are adults, Christoph and his sister Stephanie continue to work with us in our CooperRiis community. Our Heidi is solving food system problems in Massachusetts and our son Dominic works worldwide on climate change issues. Our seven grandchildren also now sit some days at the table in our community.
"It has been my life's passion to help the victims of mental illness discover that they can again be loveable, loving, purposeful people with the ability no longer to be overwhelmed by their illness. The nonprofit therapeutic communities I led provide college-like experiences where recovery and community reintegration skills and resilience are learned.
"Therapeutic communities provide residents with a home (not housing), purposeful work, and myriad meaningful relationships. Each resident awakens into a world that needs them, either in the organic gardens, in the barns with the animals, in the woodshop making flutes and drums, in the kitchen preparing holistic meals or keeping the campus in order. In our urban setting without a farm, outside community service opportunities abound. Recreational, artistic and exercise options fill out the rest of the day.
"The structure of the day is peppered with individual and group sessions with one's psychiatrist, psychotherapist, social worker, nutritionist, neuro-feedback specialist, and exercise coach. One's day, however, is not about awakening into a world that focuses on pathology; the focus is on awakening each resident's passion for life. After about 6 to 9 months in the core therapeutic community setting, residents reintegrate with work and or education by moving through a continuum of community homes with staff support at each level to help them add resilience to the new skills they have learned. The environment is safe, kind, appreciative, authentic, welcoming, compassionate and empathetic. Therapeutic communities are special places for people who should feel special, not stigmatized and isolated.
"Medication and treatment with professionals are often crucial in suppressing symptoms, but do not help the person to move into a sustainable condition of mental wellness on their own. Neither can crisis be reduced to a chemical imbalance or a brain defect. As humans, we want to love and be loved and to make a positive difference in the world of which we are a part.
"In each therapeutic community philanthropists also joined us. The Founders of our CooperRiis Healing Communities are Don and Lisbeth Riis Cooper, who know acutely the pain of having a family member with a mental health condition. They say, 'The most important thing we have done in life has been to start CooperRiis.' Their donations have helped over 800 families in the last 11 years. Each of our nearly 200 current staff also came to CooperRiis on a mission. And our more 100 residents come to us with hope for a life with a restored mission. Their Dream Statement is that more than their Diagnosis guides their Destiny.
"Our country needs more therapeutic communities like CooperRiis. Other families like the Coopers could help to establish them with capital donations. Service fees from families, medical insurance, and scholarship donations can then cover the operating expenses.
"It has been my family's great privilege to share our lives with individuals who have been diagnosed with serious mental illness. My hope is that my words about our involvement in therapeutic communities will inspire some readers to join this mission in whatever way makes sense for them.
"I also have a vision for how the concepts of therapeutic community might help existing community and religious groups to reach out to provide advocacy and help for the mentally ill. Compassionate community outreach should be the launching pad for healing.
"The virtues of therapeutic or healing community could also be infused into our current mental health system, from state and private hospitals to community mental health centers. Perhaps even in prisons, which unfortunately are now the major de facto mental health centers. Consider as well our congregations; they could all become healing communities by reaching out and including the mentally ill. Also our voluntary associations like Kiwanis and Rotary.
We are failing as a civilization, because we have turned our backs on our most vulnerable. It's time to turn around and embrace these individuals who should feel special, not stigmatized.
Dehumanizing coercion tactics do not work; compassion does. Begin a conversation. Ask an obvious victim, 'Are you OK?' and then listen. Your natural ability to be compassionate will guide you."
Thanks, Virgil. You are an inspiration to me and I hope to many others.
The modern, common sense, compassionate approach to mental illness began with Pinel 200 years ago and was based on the simple but powerful idea of therapeutic community. When I was beginning my psychiatric training 50 years ago, the model I was taught was therapeutic community. As Aristotle noted long ago, man is a social animal and only in a social unit can he experience a whole life.
Mental illness often interferes with a person's easy and spontaneous participation in a social unit. A therapeutic community heals hurts and teaches new social skills. It takes a community to help a patient.
The shame of our time is that states have robbed mental health budgets to build and man prisons, which is a crazy and cruel mistake. Therapeutic communities are lots cheaper. Therapeutic communities are lots more compassionate. And therapeutic communities help people contribute to society, rather than being outcast from it.
Advocacy for the mentally ill has been so ineffective in part because it has been so split in the often-bitter civil war between the medical model and the recovery model. Virgil's life and work exemplify how dumb and destructive this is. There is an obvious need and room in the therapeutic community for the integration of both models. Neither works well without the other.
Let's hope many people find a way of their own to join Virgil in his life's work. We need to end the neglect and banishment of the mentally ill and instead restore them to useful participation in our communities. Other countries do it. We have no excuse.
It's been many years since I have trusted anything I read in a medical or psychiatric journal. There is an enterprise-wide positive bias; findings never seem to replicate; benefits are hyped; harms are hidden.
Drug companies bear most of the blame- the research they sponsor is shoddy and market driven. Scientists are also to blame when they torture data so much it will confess to anything. Medical journals are to blame when they publish positive findings from lousy studies and reject negative results from well done studies, and journalists are to blame when they uncritically accept phoney claims. It won't surprise you that the most widely cited study in the recent literature is also my favorite: 'Why Most Published Research Findings Are False' by John Ioannidis.
David Healy MD has been a leader in exposing the harms of drug treatments and the tricks of drug companies. He has also attacked the accepted wisdom that evidence based medicine requires the foundation of randomized, placebo controlled clinical trials (RCT). I agree with much of his criticism, but not with his conclusions. Here is a brief synopsis of our debate.
Dr Healy writes: "Most papers reporting results of drug sponsored randomized clinical trials are ghostwritten by people hired by the drug company. In a world where we usually have no access to the raw data, such papers published in premier medical journals can claim as safe and effective a drug that is in fact dangerous and ineffective. This is bad medical research that leads to bad medical practice.
"Proponents of Evidence Based Medicine (EBM) agree that drug company research behaviour is egregiously bad, but argue this does not necessarily prove that clinical trials are inherently flawed. The problem supposedly lies in letting industry design, conduct, and implement the trials. Presumably everything would be okay if only the trials were designed and run by Angels or the Government - studies would then deliver trustworthy, gold standard evidence that cannot possibly be obtained in any other way. EBM proponents favor the presumed objective results of controlled RCT's to the subjectivity of uncontrolled clinical observation. Without RCT's, they claim, we cannot practice Evidence Based Medicine.
"Should industry be stripped of the right to ghostwrite trials and be forced to allow access to the trial data they don't own? Sure, but even if run by Angels, trials favour industry because they allow weaker and weaker drugs to enter the market, while hiding the harms.
"Here's how. Clinical trials began as a way to demonstrate that experimenters knew what they were doing. If on the basis of good laboratory science demonstrating the pathology of a condition or direct observation of cures we had a drug that corrected a problem, then comparing it to placebo randomly allocated would show the drug to be superior to placebo. This test would not lead to new knowledge - it would confirm what we think we already know.
"The only time we learn something from clinical trials is when a huckster who has duped vulnerable patients into taking a drug for some purpose is forced to compare his nostrum to placebo and the trial shows him to be a conman. A demonstration like this can make a major contribution to patient safety.
"In 1962, following the thalidomide crisis and just after the RCT method was developed, there was a political imperative to improve the safety of drugs. Based on the possibility that controlled study might control hucksterism, RCTs got built into the regulatory apparatus. It seemed a good idea to force the pharma camel to pass through the eye of a scientific needle in order to protect vulnerable patients. No-one recognized the pitfalls.
"First, in trials we compare a drug to placebo. Even snake oil would come out as having a benefit if we put a large enough number into the trial.Second, to run an RCT you have to hypnotize investigators and patients to ignore the 99 things a drug does, and focus instead only on one thing - the thing both pharma or some Angels want you to focus on. There is a risk in generating ignorance in this way in order to nail down one effect while having a kind of hysterical blindness to harms. It's worth taking the risk when we show the drug doesn't work and the drug doesn't then get on the market - which is what people expected in 1962, but is not what has happened since. Third, RCTs are supposed to deliver objectivity by controlling confounders but when both the illness and the drug produce the same symptom, RCTs create ineradicable confounding. They make it possible for drug companies or Angels to pass off the harms caused by treatment as a symptom of the illness being treated. And in medicine, it's very common for both an illness and its treatment to produce overlapping effects.
"To then claim, as the rhetoric of Evidence Based Medicine does, that RCTs provide gold standard knowledge about what drugs do is to generate ignorance about ignorance.
"This is not just an abstract ignorance. In 1962, it took a year or two from the time of a drug's launch to recognize its major hazards. It now takes decades from the time of first description to the point where the field accepts a link between treatment and hazard.
"Drug induced death is likely now the leading cause of death - it's difficult to be certain because we don't collect the data adequately. And little is being done to remedy our lack of awareness of drug risks.
"More of the same RCTs are not the remedy. The calculations that come out of an RCT are only as good as the data (observations) that go in. In the belief that RCTs are more objective than doctors and patients, we have undermined the abilities of people to observe and act on the basis of their observations. It is when people with a range of biases agree on what they are seeing that we get objectivity - a mechanical process can never deliver this.
"RCTs created Evidence Based Medicine. Most listeners hearing EBM hear Data Based Medicine, but evidence is not data. Statistical calculations derived from aggregates are a way to deal with conmen - not a guide to the practice of medicine. The individual patient is the datum in medicine."
Thanks Dr Healy. I agree with you on the diagnosis of what ails the clinical research literature, but disagree with your suggested cure. If we have learned one thing from the history of medicine it is the dangerous fallibility of uncontrolled and anecdotal clinical observation. Doctors have killed patients for millennia by bleeding them, administering emetics and cathartics, and prescribing poisons. The power of the placebo effect, the vagaries of chance correlational associations, and observer bias all overwhelm the generalyzability of any given clinical observation.
Dr Healy is right about the fallibility of clinical trials, especially when their basic purpose is not to help patients, but rather to sell drugs or advance research careers, but his solution is even more fallible. We have done the experiment for thousands of years and the clear conclusion is that anecdotal medicine is arbitrary and harmful medicine.
The only responsible courses of action are to improve designs and measures, standardize implementation, change sponsors, achieve complete transparency, report harms as thoroughly as benefits, and eliminate hype. With all the limitations, there is simply no substitute for randomized placebo controlled studies-we must improve them because we can't do without them.
However, it is clearly allowing the fox to guard the henhouse to give drug companies the franchise in conducting the studies that lead to the regulatory approval of their products. The huge financial rewards will inevitably lead to badly biased implementation that cannot be adequately corrected even if there is complete after the fact transparency.
Drug companies should be taxed to support an independent testing agency that would be responsible for conducting consumer oriented clinical trials for safety and efficacy prior to regulatory approval and for collecting later surveillance data on adverse effects. No system will ever be perfect, but independent trials would be a great advance over the junk we have now and far more trustworthy than the uncontrolled clinical observation suggested by Dr Healy.
Dr Healy replies: "It's a mistake to generalize from the effects of a drug on the patient in front of me to the average effects of a drug, but it is an even more dangerous clinical mistake to generalize from average effects in studies to the patient in front of me. The drugs that came on the market in the 1950s before we began using RCTs were more effective and safer - guided by doctors reporting on what they saw in front of them - that the drugs we have had since."
I answered: "The pioneer drugs of the 50's were all such home runs they could be discovered by clinical serendipity and n of 1 observation. But the low hanging fruit has all long since been picked. Refinements with much lower effect sizes require systematic study."
Dr Healy's last word: "Do we want treatments with low effect sizes especially if their hazards are hidden by the trial process?"
My last last word: "We can't expect every useful drug to be a home run."
Doctors prescribe way too many medicines for patients who don't really need them. A lot of the pressure comes from intense drug company marketing. Some comes from patients who aren't happy leaving the office without a pill. And doctors have too little time with each patient to explain non-pill solutions to problems. Wild prescribing is not new. For thousands of years, doctors have given patients useless (and often quite harmful) drugs and patients have taken them.
Modern medicine was meant to be different- it would be based on scientific evidence that could tease out real effect from placebo effect. Unfortunately, evidence-based medicine is only as good as the evidence it is based on. And in many instances our evidence is not very good because it comes from biased drug company studies.
This is particularly true for the 'off-label' prescription of medicines- use based not on the systematic study required for an FDA indication. Off-label prescribing is the wild west of medicine- any doctor can prescribe any drug for any problem.
Kim Witczak became involved as an ardent drug safety advocate after the death of her husband, Tim "Woody" Witczak, in 2003 as a result of a drug side effect that had not been disclosed to him. She has taken her personal experience and launched a national drug safety campaign through www.woodymatters.com:
"Doctors routinely give powerful drugs off-label to their patients, without strong scientific evidence proving the drugs will be safe or effective, and sometimes despite warnings that such prescribing could cause serious harm.
"All the while, patients have no idea that the drug that's being recommended to them does NOT have FDA approval for the particular condition. They just assume and trust their doctor.
"Once a drug has been approved for sale for one purpose, physicians are free to prescribe it for any other purpose. They are not limited to official, FDA-approved indications. Off-label prescription use is very common. Up to one-fifth of all drugs are prescribed off-label and amongst psychiatric drugs, off-label use rises to 31%.
"A recent study reveals that one third of children in foster care diagnosed with ADHD have been treated off-label with an atypical antipsychotic medication. As a parent, would you consent to your child being prescribed an antipsychotic medication? The name alone should raise a red flag. And most atypical antipsychotics are NOT approved by the FDA for use by children.
"Drugs are often used off-label, with nearly 80 percent of off-label prescriptions lacking 'strong scientific evidence,' which means we do not know if their risks outweigh their benefits. Ultimately, its buyer beware.
"It's one thing if you have a rare disease and are desperate to try something that might offer hope. It's another thing if you went into your doctor because you're having trouble sleeping due to stress of a new job. Again, it's a fine (yet potentially deadly) line patients are walking. We need to be told if the FDA has approved the product or if its being used off-label based on an article that appeared in some journal. Otherwise, we are just guinea pigs.
"The FDA may soon make matters worse. It is considering new policies on distributing reprints of medical and scientific journal publications. In its new draft guidance entitled, 'Distributing Scientific and Medical Publications on Unapproved New Uses-Recommended Practices.' The drug industry will be allowed to distribute journal articles and clinical practice guidelines (CPGs) regarding off-label use of their products to the medical community. This is basically a loophole for the pharmaceutical companies to promote their products off-label.
"In recent years, over $13 billion in fines have been paid by major drug companies to settle lawsuits against them for their fraudulent marketing practices, including off-label promotion of their drugs/devices not approved by the FDA.
"There's a fine line between the drug company informing doctors about a new potential benefit in an off-label indication and the illegal promotion of product for increasing sales.
"In my opinion, this new guidance sends mixed messages. On the one hand, the FDA states that it 'recognizes the value to health care professionals of truthful and non-misleading scientific or medical publications on unapproved new uses.'
"But as everyone knows, medical journal articles are often biased because the authors or ghostwriters are paid by the company whose product is being studied. This should be very concerning to the doctors and patients alike.
Now more than ever, Informed consent is needed. It's a great opportunity for patients and/or their caregivers to have an intentional conversation with their doctor about their medications. Armed with ALL the information, including if the drug is being used off-label, patients are then able to make an educated and informed decision about their drugs.
"It sure seems like we could all get behind this concept and demand informed consent for drugs being given off-label. It just makes common sense for everyone, patients and doctors, alike."
Thanks, Kim. This is a great suggestion that I would extend even further. Why not require doctors to get written informed consent from their patients for all use of medication? This would make for much better informed consumers and reduce careless over prescription of medication.
Off-label prescribing is much better for drug company profits than for patient welfare. Using medicines for unapproved uses on balance probably does much more harm than good. The doctor has no reason to think the medicine will work, every reason to know it will have side effects. Prescribing for indicated uses is over done, prescribing for off-label use is rarely justified.
It would be a great mistake for the FDA to loosen its already weak control over drug company salesmanship. Drug companies have in past sustained large fines for illegal off-label marketing because the rewards are so great. FDA would be opening the gates to even more unscrupulous drug marketing. We need to restrict misleading marketing not promote it.
The argument that drug sales people are educating physicians doesn't pass the laugh test. Their compensation is based on how much product they can move, not on appropriateness of prescription. And no study funded by a drug company can ever be trusted.#
In many previous blogs, I have bemoaned the shameful state of psychiatric care and housing for people with severe mental illness.
My conclusion was that the United States now is the worst place and worst time ever to have a severe mental illness. Hundreds of thousands of the severely ill languish inappropriately in prisons. Additional hundreds of thousands are homeless on the street.
But it gets worse. Having a severe mental illness also means that you will probably die very young. I have asked Dr Peter Weiden to explain why and to suggest what we should do about it. He is Professor of Psychiatry at University of Illinois Medical Center and has spent his professional career working on improving outcomes and reducing side effects and complications for people with serious mental illness.
Dr Weiden writes: "In the general population, our life expectancy in the United States is approximately 80 years (77.4 years for men, and 82.2 years for women). This is a stunning improvement in life expectancy since back in the 1970's when life expectancies were a full decade shorter, around 70 years. The rapid and profound decrease in smoking is probably the single most important factor.
Certain groups do not share this good fortune. For example, black Americans live about 5 fewer years than whites. But one group suffers by far the most- with an average of 20 years of reduced life, in the ballpark of the life expectancy in Rwanda or Afghanistan.
Who is dying so young? You might think it would be people with HIV or severe asthma or some other serious medical condition. But it is not. As you have guessed by now, the group in question are those with a diagnosis of serious mental illness-schizophrenia, bipolar disorder or treatment resistant depression.
It has been known for many years that individuals with serious mental illness were more likely to have medical problems like diabetes, hypertension, or heart disease, but most of the mortality concern was on suicide prevention and other kinds of injuries that come from poorly controlled psychiatric symptoms.
The wake up call came in 2006 when a groundbreaking study of mortality statistics showed that individuals with severe mental illness were dying between 13 and 31years early, averaging to over 20 years of life lost relative to age matched general populations. Their causes of death were actually very similar to the causes of death in the general population, only happening on average about 20 years earlier.
While suicide and accidental deaths are still much more likely to happen in the severely mentally ill relative to general population, these are still relatively uncommon, whereas there is a doubling or tripling of the mortality from heart disease, diabetes, respiratory ailments, and cancer. People mostly die in their 50s of the same problems that kill off the rest of us 20 years later.
Many reasons conspire to create this shameful statistic. People with severe mental illness are less likely to take good care of themselves, more likely to smoke heavily and have sedentary lifestyles, and have more difficulty than most negotiating the complicated medical care system to go for appointments and follow-up care. And primary care physicians are not well trained or compensated for the additional complexities involved in diagnosing or treating medical problems in the severely ill.
A word about medications for mental illness, and their role in mortality. It is a complicated question because medications can be very effective in controlling psychiatric symptoms so that patients are better able to reduce medical risks and actively participate in medical care. On the other hand, some medications cause significant weight gain and dyslipidemia (increase in triglycerides and cholesterol) which can make the already bad situation worse. This dilemma is better now that there are effective medications that do not often cause weight gain or elevated lipids. Though this remains a vexing challenge for mental health professionals, the major problem seems to be the greater number of medical risk factors among persons with mental illness and their lack of access to high quality medical care.
A growing research literature shows that bringing the medical doctor to the psychiatric patient works much better than trying to bring the patient to regular medical services. The merging of primary psychiatric care with primary medical care is urgently needed.
Is this too much to ask? When we get surgery we expect other doctors to be available. The surgeon will be surrounded by a team including radiologists, anesthetists, and if there are heart problems a cardiologist. Having an appropriate medical team working together is usually not available for those who have psychiatric conditions.
Which throws the basic inequality into stark relief. Society would not tolerate 20 years of lost life expectancy for other groups, even those that also suffer discrimination like Latino or blacks or gays. If this were HIV or breast cancer or multiple sclerosis, we would not tolerate the total fragmentation of healthcare as we do with mental illness.
We are complacent because the lives of those with severe mental illness do not matter to us. Unless the person dying young is your parent or your child, or your brother."
Thanks so much, Peter, for this glum, but much needed assessment. Until recently, I have assumed that the reduced life expectancy in the severely ill was attributable to the big four of lousy medical care, heavy smoking, sedentary lifestyle, and antipsychotic use. To my great surprise, a large and well conducted study recently found the lowest mortality in the severely ill who had received low to moderate doses as compared to those who took no medicine or high doses. This is just one study and can be interpreted in different ways, but it does suggest that antipsychotics are less the culprit in early death than I had imagined.
Which focuses attention even more on lousy medical care, and smoking. Clearly, we must improve not just the current totally inadequate psychiatric care and housing provided for the severely ill, we must also follow Dr Weiden's suggestion that medical care be an essential part of the package- along with smoking cessation and exercise.
Will anything change? The (non)treatment of severe mental illness in the US is our national shame. This is voiceless constituency in the US that very few people seem to care about. It is different in much of Europe where enlightened policies and adequate funding for the severely ill lead to decent lives in the community and better healthcare.
There is media and political outcry when there is poor health care for the military, or children, or women or minorities. everyone went crazy when one person died of Ebola. We should be deeply ashamed of ourselves for neglecting the severely ill- creating a system that imprisons them, renders them homeless, and allows them to die so young. We need a Charles Dickens to illustrate their plight and a new Pinel to free them of their chains. Two centuries ago, the age of enlightenment banished the idea that mental illness was caused by witchcraft or possession. As Harry Stack Sullivan put it- people with schizophrenia were more simply human than otherwise. Its long past time that we remembered this and acted accordingly. #
Mental disorders have become a global commodity. A diagnostic fad heavily promoted first in the US now quickly spreads around the world.
Multinational corporations have perfected the profitable art of international marketing. The reach of pharma stretches everywhere in the world with a sales pitch easily translated into every language: "Sell the ill to sell the pill."
The basic strategy is to expand the market by convincing the healthy that they are sick-that their expectable distress and imperfections are a mental disorder caused by a brain chemical imbalance that requires correction with an overpriced pill.
The very best customers are those who weren't sick in the first place. Their sky high placebo response rate guarantees they will be very satisfied even with treatments that were not really necessary and may even be harmful. This explains how bleeding and purging were the go-to medical treatments for thousands of years, even though they did absolutely no good and instead caused lots of harm.
Once the adult market gets locked up, drug companies direct their marketing guile to recruiting ever younger child customers and the old folks in nursing homes, and it isn't satisfied until it has captured every possible customer in every possible country.
The US is by far the best market because it is big, rich, and the easiest to control and to monopolize. Only in the US has pharma been able to bully and bribe politicians into allowing direct-to-consumer advertising and into disallowing price negotiation even with its biggest buyer (the government). The results in the US are massive over diagnosis and massive over treatment with medication. Sweet profits that make drug companies the most profitable of all industries, but bad for patients.
The pickings are less easy and less lucrative in the rest of the world, but still nothing to sneeze at.
I sought the perspective of Patrick Landman on the progressive globalization of ADHD. Dr Landman is a Parisian child psychiatrist who has just published the book ADHD: The Invention Of An illness. He will describe the international trend and why until recently the French have been more than successful than most in resisting it.
Patrick writes:"We must face the fact that some mental disorders are sold just like industrial or commercial products. Once the US market had become saturated, Pharma concentrated its efforts on developing new international markets that held more promise of promoting possible rapid growth.
"It is no longer just medication that is marketed - now drug companies also market diseases. Psychiatry is particularly well suited to this strategy because the criteria for distinguishing between normality and pathology are not scientifically defined and because mental pathologies are multifaceted and somewhat arbitrary social constructs.
"Attention Deficit Hyperactivity Disorder is a prime example. The US 'market' already has 11% of children aged 7 to 17 diagnosed with ADHD and 6% on medication. Rates tripled in just 20 years and revenues increased 50 fold to almost $10 billion/yr. The US consumes almost 70% of the world's anti-ADHD drugs. The growth of ADHD has been almost equally strong in Canada, Australia, and New Zealand but the rest of the world is there to be conquered.
"Of course, the multinational pharmaceutical companies are not solely responsible for the expansion and globalization of ADHD. We must also include the ways in which information about ADHD can be spread worldwide thanks to internet access; the tests and checklists which enable self-diagnosis and the way self-diagnosis is marketed; the role of the service users and discussion forums; the change in thinking regarding what users demand; the pressure on children to succeed academically; and, lastly, the domination of DSM IV and later DSM 5, which widened the ADHD definition compared to the one in the International Classification Of Diseases.
"Faced with this globalization, we are bound to be interested in any small islands of resistance, and specifically in the French example. Until 2005, the prevalence of ADHD in France had long remained very low- around 1-2% compared to the 11% in the United States and more than 5% in the United Kingdom, the Scandinavian countries, and Spain.
"The reasons for this French particularity are multiple and interconnected. First, French child psychiatry has been strongly marked by psychoanalysis and the psychopathological tradition, and there has been an ideological resistance to prescribing medication to children.
"Secondly, there is a specific French classification of mental diseases based on the European clinical tradition,which does not associate hyperactivity with attention disorder. Many French child psychiatrists therefore see ADHD as a social construct 'made in USA,' one that lacks validity and is based on a narrow biological reductionism.
"Thirdly, for a long time the French education system was fairly tolerant of children's behavioral problems.
"Lastly, the power to prescribe psychostimulants to children was legally restricted to medical specialists and hospital psychiatrists.
"Since the 2000s, many things have changed and the latest figures show that 3.5% of children have now been labeled with ADHD. France is definitely catching up. What are the factors behind this change?
"First is the massive introduction of the DSM into psychiatric training and practice. Second, media campaigns have discredited psychoanalysis and child psychiatry and favored neuropediatrics, whose neurodevelopmental hypotheses are supposedly more 'up-to-date.' The exclusively bio-medical model has made significant inroads. Third, society's demand on psychiatry has also changed, and the focus is now on making the behavioral problems of the disruptive child disappear as quickly as possible. Fourth and most important, drug companies are working hard to sell ADHD. Fifth, the pressure from certain users associations for the recognition of ADHD as a qualification for disability rights.
"And finally, the French education system is undergoing a major crisis: the struggle to integrate children of migrant origins who are often caught up in multiple social, cultural, linguistic and educational problems .More and more often, teachers have to deal with situations that seem to be out of their control; increasingly, they become the pre-diagnostic filters of 'ADHD' -brokers of medical prescription. The effect is to turn school and societal problems into medical disorders in the individual child.
"French child psychiatry is currently moving away from the exclusively psycho-social model of 'brainless' psychiatry (which in some cases turned out to be too reductionist) and towards the (equally reductionist) biomedical model imported from the USA.
"The social role of psychostimulants has changed as well: if for Marx religion was the opium of the people and a way of putting social conflict to sleep, psychostimulants have become the opium of our children, sedating familial, pedagogical, educational, psychical, and social conflicts.
"For psychiatry, the future lies in refusing all of such extreme and reductionistic theories and treatments. We must use common sense in combining a humanistic tradition with scientific discovery. We can avoid the over diagnosis and over treatment of ADHD by taking a rounded view and resisting drug company manipulation."
Thanks so much, Patrick. It is crucial that parents everywhere become informed consumers in order to protect their kids from over diagnosis and unnecessary meds.
All medicine should be bio/psycho/social. Illness is never just a biological phenomenon; more than 80 percent of health outcomes are determined by economic, social, and behavioral factors, and the psychosocial part is especially important in psychiatry. As Hippocrates pointed out 2500 years ago, it is more important to know the patient who has the disease than the disease the patient has.
In recent years, psychiatry has embraced what a former president of the American Psychiatric Association has despairingly called a "bio/bio/bio" model. The enormous research budget of the National Institute Of Mental Health has been totally invested in biologically reductionist brain and genomic research.
Pat Bracken is an Irish psychiatrist and philosopher who would like to put the mind and soul back into psychiatry. Pat writes:
"I believe that psychiatry finds itself in a pernicious position. Pharma has used its financial power to mould psychiatry into something that serves corporate needs, not the best interests of patients, and the massive investment in genetic and neuroscience research has yielded practically nothing of clinical value for our patients. In fact, we have gone backwards. The narrow focus on biological research has led to a profound neglect of the social, cultural and psychological dimensions of mental illness.
"In the United States, where Pharma has had most influence and the perverse payment system has operated, there is evidence that, to a large extent, psychiatric care has become equated with the provision of a DSM diagnosis and a prescription.
The New York Times carried a story in 2011 in which a psychiatrist spoke of having to train himself not to get too close to his patients and 'not to get too interested in their problems'. His role was simply to check the diagnosis and adjust meds.
"The reductionism that now dominates psychiatric theory and practice is ideological in nature: it does not stand up to conceptual challenge and is not supported by the results of empirical investigation. Its dominance is sustained through finance from Pharma allied to a professional quest to be more 'medical' than the rest of medicine.
What we have to grasp is that when we put the word 'mental' in front of the word illness, we are doing something important. We are delineating a territory of human suffering that is primarily about relationships, meanings and values. And, while we cannot experience anything without a functioning nervous system, knowledge of the brain will not help us a great deal in understanding the nature of this territory. The brain is a necessary, but not a sufficient cause of human experience.
"We are embodied beings but we are also encultured. We grow to become human in the midst of language, culture, history and relationships with others. These shape the way we experience ourselves and how we encounter the world around us and cannot be reductively explained in biological terms.
"The demand that psychiatry should simply become a 'clinical neuroscience' is nothing more than an assertion of dogma and is not based on a genuinely questioning scientific approach to the sort of problems that face us. We need to nurture the development of a psychiatry that sees relationships, meanings and values as its primary focus. I have used the word 'hermeneutic' to describe this.
"How to get there is the challenge. Evidence-based medicine (EBM), with its focus on controlled studies and meta-analyses, has not proved robust enough in protecting psychiatry, and medicine in general, from corruption. It has been said that EBM itself is 'broken.' With our colleagues from other medical disciplines we will need to develop a much deeper form of critical appraisal.
"I believe that any profession that has power in the lives of ordinary people should seek to critically reflect on its own history, assumptions, values and practices in an organised and sustained way. A mature profession should not be afraid of this. We need practitioners who are trained to question and to doubt, to challenge their teachers and to see financial ties to third parties as an aberration.
"On a more positive note, our discipline has a rich history of grappling with conceptual issues before the rise of 'neuromania' and the DSM. The work of Karl Jaspers stands out in this area but many of our predecessors struggled to develop a theory and a practice of psychiatry that was not reductionist. The great Swiss psychiatrist, Medard Boss, for example, sought to develop a specifically hermeneutic psychiatry in the post World War II era. We do not have to re-invent the wheel. A growing movement of critical psychiatry is now emerging as a positive force for change within the profession.
"I believe that we need to develop a practice that is centered on relationships and we need to acknowledge the limitations of a diagnosis-guided practice in our field. This is not anti-medical but simply an acceptance that mental health work demands something different. We need to nurture negotiation skills in our trainees and encourage them to engage with the growing consumer movement in a positive and non-defensive way. We need to accept that psychiatry has done a great deal of harm to many of its patients and professional arrogance should be stigmatised and fought against. We need to nurture doubt, questioning and critical reflection in our academic and clinical practice.
"Hermeneutic psychiatry would be one where doctors, patients, carers and other professionals struggle together to determine what research, teaching and service models are appropriate. I also believe that we should struggle to shed the power to order coercive interventions. This is not to say that sometimes people need to be cared for safely and even against their will, but there is no scientific or moral reason why the medical profession should be in charge of this.
"I do not claim to have an answer to all the problems of psychiatry but the following moves will be essential if we are to find a cure for our current ills: 1) collaborate with other doctors who are struggling to free medicine of Pharma corruption, 2) find ways of working positively with, and learning from, the growing international consumer movement, 3) balance our involvement with the biological sciences with an equal involvement with the humanities and social sciences, 4) nurture the development of a clinical discourse that is centered on relationships, meanings and values, 5) seek to shed the coercive powers that are now invested in us and promote an open debate about how people can be looked after safely through times of crisis."
Thanks, Pat. We must get back to treating the whole person, not just his brain circuits. The brain is involved in all we do and what we are, but it is also itself influenced by our psychology and social context. We must equally counter those who err in recommending an opposite and equally extreme psychosocial reductionism. Mindless psychiatry and brainless psychiatry are equally misguided and harmful.
"If doctors do no other good, they at least prepare their patients early for death, undermining little by little and cutting off their enjoyment of life."
These words from Montaigne are 350 years old, but sadly too often they describe the results of modern medicine, particularly when it is mindlessly applied applied in a needlessly heroic way to the end of life.
I spend a lot of time going around to different places warning professionals and the public that over diagnosis, over testing, and over treatment are bad for our health.
Recently, I have been witnessing these dangers first hand. As mentioned in my last blog, I have a friend who has lung cancer- the good, slow growing kind. His doctors have been less kind than the cancer. They keep screwing up in ways that seem likely to kill my friend before his cancer does.
The basic problem is that modern medicine consistently violates the ancient advice of Hippocrates- "It is better to know the patient who has the disease than the disease the patient has".
My friend has a small army of very highly specialized doctors all treating lab results in one tiny medical domain while ignoring all the aggressive stuff the other specialists are doing. None of the doctors has a global picture of my friend's treatment and the specific risks and benefits that apply to each new test or treatment.
The result is dangerous medical chaos. Doctors love pictures and get paid a lot for ordering and reading them. Over the years, my friend has been subjected to countless and mostly unnecessary imaging studies with contrast dye that have compromised his kidneys. It seems likely that renal insufficiency will kill him before his lung cancer does. He is also no longer eligible for additional lung cancer treatments because his kidneys flunk protocol requirements. And along the way, he has also been prescribed several unnecessary medications that also hurt the kidneys. Everyone focused on the lung cancer; no one noticed the harm they were doing to the kidneys.
There have also been several close calls because he was prescribed multiple medicines by multiple doctors without coordination and due consideration of their interactions and synergistic harms.
The mistakes were all easily preventable if anyone were minding the store and paying attention to the patient, not the lab tests. In any common sense world, doctors would care about risks and harms and wouldn't always be rushing to order stupid and dangerous tests and treatments.
The recurring mistakes in my friend's care are the rule, not an exception. Medical error is now the third leading cause of death in the US- 440,000 deaths a year caused by hospital mistakes and who knows how many more from outpatient mistakes.
Hippocrates must be spinning in his grave. We have lost track of what should be the most important dictum in medicine, his "First Do No Harm." Too many doctors, too many tests, too many procedures, and no one keeping track. Its a prescription for disaster and the disasters keep happening.
The wise neurologist Nicholas Capozzoli of Annapolis Maryland has this advice for his elderly patients: "If you want to have a long, happy, and healthy life, try to do two things- one, don't fall; two, stay away from doctors."
Unfortunately, certain diseases- like cancer- force us to break rule 2. We need doctors and the powerful treatments they sometimes have to offer.
But we can't trust doctors and hospitals to get it right. I am getting in the habit of joining my friend at his visits to make sure the doctors and nurses don't screw up. You shouldn't need to bring along a doctor to protect you from your doctors.
The system is broken and the incentives are all wrong. And it is not likely to be corrected soon. Too much money is being made by powerful corporations and institutions that profit from the current lack of coordination and sensible regulation. Free market medicine that treats healthcare just like any other business commodity just doesn't work- because it puts profits before patients.
For now, the only protection is a well informed consumer. Read everything about your condition. Ask lots of questions about the rationale, risks, and benefits of every test and treatment. Expect clear and convincing answers. When in doubt, get second and third opinions.
Keep in mind that less is often more.
In my last blog, Fuller Torrey described the dramatic deterioration of our mental health non-system and the resulting torment for the 600,000 severely ill who are either homeless, in prison, or rotating between the two.
There will be general agreement with Dr. Torrey that all of us should feel deeply shamed by this and inspired to do something to reverse it. We can also probably agree that the most important single thing we can do for the severely ill is provide them with decent housing.
Consensus beyond this is more difficult to come by. Dr. Torrey emphasizes the need for easy access to adequate treatment, the value of medication, and the very occasional resort to court ordered treatment for those in imminent danger of otherwise winding up imprisoned or homeless.
The recovery movement comes at this from another perspective, which will be described by Gina Firman Nikkel, PhD, CEO of the Foundation For Excellence in Mental Health Care. I have asked her to indicate where there are differences, but also where she sees possibilities for joint advocacy and for complementary rather than competitive service delivery.
Dr. Nikkel writes:
"The recovery model is a large and inclusive tent with broad areas of common interest, but also many different views on specific points, conditioned by very intense differences in how the mental health system has been experienced. For example, a person who has had negative treatment results, or has been forcibly restrained, or has been treated with disrespect by mental health professionals will have a powerfully negative perspective on the imposition of coercive treatment. In contrast, the family member who has tried unsuccessfully to get their loved one to accept much needed treatment and has helplessly watched them be imprisoned or wandering the streets will view the use of coercion in a radically different way. Everyone, in their own way, wants what's best for people with mental health challenges but risks and benefits are interpreted through a personal lens.
There is wide agreement that whatever model we are using, it is crucial to provide the financial, housing, employment, education, and social supports necessary for an independent and successful life. We clearly don't have anything approaching enough of these. There also consensus that the use of alcohol and street drugs interferes with people getting on with their lives and staying out of jails, prisons and homelessness. For these problems, peer supports that parallel AA and NA are broadly seen as gaps that can be filled by people with 'lived experience.'
It is also hard for anyone to deny the role that trauma and adverse childhood events play as major factors that need far more attention and earlier intervention. This is especially so for children living in troubled families and those who experience 'adverse childhood events.' Again, no matter the model, whether medical or social, a trauma-informed system of care would go a long ways toward healing psychological, social and even physiological wounds.
We can also find great common ground among advocates on the need for much better medical care for people with severe mental health issues, especially since their life expectancy is about 20 years shorter than for the general population. Aside from providing access, it is important to train medical personnel about special medical problems drug complications (especially obesity), poor diet, heavy smoking, and lack of exercise. These are key issues that need more attention as integrated health systems are created and charged with improving the health of all populations.
There is a great divide in terms of whether services are best offered in traditional psychiatric or recovery settings, but there is still plenty of shared concern that services of any kind are not consistently or widely available. There are a number of community mental health systems that find a combination of the two types of programs complementary and not at all contradictory.
Recovery is the goal of whatever supports or treatments or interventions are available, especially if recovery is viewed as a life lived with friends, success in school, work and physical health. Many medically oriented leaders, like Dr. Stephen Marder of UCLA, have been saying this for some time.
Finally, whether spoken or not, there's probably a consensus that fighting with each other is largely a waste of resources and energy. It would be a step in the right direction to acknowledge that significant differences exist but that there is a great deal of common ground. I think there also would be agreement that the best research and science on short term and long term outcomes should become the standards by which many of the disagreements should be judged and resolved to the greatest extent possible."
I am grateful to Dr. Torrey and Dr. Nikkel. It seems clear to me that their common dedication to helping the severely ill far outweighs any specific areas of difference. The point is that one size does not fit all. As the Talmud puts it, "We don't see things as they are, we see things as we are."
My clinical and research experience and reading of the literature convince me that medication is essential for most people with severe and chronic symptoms. It is equally clear that medication is way overused in many people who don't need it. Anyone who inflexibly and ideologically believes that medication is all good or all bad is seeing only one part of the complex picture and is making recommendations that will sometimes be out of place and cause more harm than good.
The controversial question of coercive treatment also has to be understood in context. The drastic reduction in inpatient and outpatient services has made any psychiatric treatment, voluntary or coercive, very hard to get. It is now far harder to get into a hospital than out of one. Coercive treatment has become rare, usually brief, and provided as a means of avoiding the much greater, more degrading, and longer-term coercion that comes with imprisonment.
It made great sense 50 years ago to fight hard against the then common and often unjustified use of psychiatric coercion. But the real fight now is against the much more frequent and much more coercive imprisonment of the severely ill - ten times more of whom are currently in prisons than in hospitals.
The Psychiatric Times is leading what may become a very promising discussion on what can be done to fix our broken heath system. We need to collect the widest possible assortment of suggestions and opinions. Please contribute your ideas and experiences on their website.
For those suffering from severe mental illness, this is the worst of times.
The most dispiriting moments in my entire life have been spent visiting solitary confinement units in state and federal prisons. Many of the inmates have obvious psychiatric symptoms, talking to themselves, screaming and/or pacing agitatedly back and forth; some even smearing excrement all over the walls and on themselves. And walk the streets of any city and you will find multitudes of the mentally ill left homeless to fend as best they can for themselves.
Because of inadequate treatment and housing, the mentally ill are extremely vulnerable to arrest for avoidable nuisance crimes- it is as simple as stealing some food from a store, sleeping on a bench in a public park, or shouting back at voices in the middle of the night. Police have learned that it is a waste of their time to take the person to an emergency room- they will have to hang around for hours after which there is no bed available, no timely outpatient appointment, no housing solution. So their default position has become an arrest- turning someone who should be a patient into a prisoner.It doesn't have to be this way and isn't in other countries with a more developed social conscience and better preserved family units. The tools of effective treatment and decent housing are well known. We just don't provide them with anything approaching adequate funding. Beyond the shameful inhumanity, this is penny wise and pound foolish. Community treatment and housing are far cheaper than prisons.
Over his long career as researcher, clinician, and ardent advocate, E. Fuller Torrey MD has been the most persistent and most effective champion for those with severe mentally illness. If we don't understand the history of how we got into this shameful mess, we won't know how best to save the severely ill from their outrageous fate. Having lived this history, Dr. Torrey is in the best position to explain it for us. He writes:
"Let's start with fifty years ago. In 1964, 'deinstitutionalization' was well underway with 12 percent of state hospital beds having been closed. There were still 255 public psychiatric beds per 100,000 population. Thorazine was widely available and the staffing of the hospitals had improved markedly since the severe shortages during World War II.
Thirteen states had already passed community mental health legislation and outpatient clinics were increasing rapidly. Among the existing 1,400 clinics, individuals with psychotic disorders constituted 20 percent of the patients. Mental health centers such as the Massachusetts Mental Health Center, Fort Logan in Colorado, and San Mateo in California were regarded as models, two years before the first federally funded CMHC would open. Promising experiments in delivering psychiatric services were underway, such as the Louisville Homecare Project which demonstrated that many individuals with schizophrenia could be cared for at home by visiting public health nurses. Rehabilitation efforts were being led by the Fountain House clubhouse in New York and by programs such as the Fairweather Lodges in California.
In 1964 almost nothing was being written about seriously mentally ill persons among the homeless or in jails and prisons; existing data suggest they constituted less than 5 percent of both. There had not been a single mass killing associated with a mentally ill person in 15 years, since Howard Unruh had killed 13 in Trenton, New Jersey in 1949.
Fast-forward half a century to 2014. 94% of state mental hospitals of the beds have since been closed, leaving only 11 beds per 100,000 population. A consensus of experts suggested that 50 beds per 100,000 population is the minimum needed.
And psychiatric outpatient care for individuals with serious mental illness is in very short supply. The federally-funded CMHC program has come and gone, widely regarded as a failure because less than 5 percent of the patients treated had psychotic disorders. Some progress has been made in establishing best practices, such as the continuity of care under Assertive Community Treatment (ACT) teams and the importance of early treatment, but best practices are not widely available. The treatment system is vastly underfunded and not directed toward best practices.
Multiple studies find that approximately one-third of the homeless population have untreated serious mental illness. A 2010 report estimated there are 650,000 homeless persons in the U.S., suggesting that approximately 216,000 are seriously mentally ill.
A 2014 study reported that 15 percent of state prisoners and 20 percent of jail inmates, which equals 356,000 individuals, are also seriously mentally ill.
The total number of seriously mentally ill individuals who are homeless and incarcerated is thus about 572,000, which is almost the same as the number of state hospital beds that have been closed.
Studies in New York, Indiana and California suggest that individuals with severe mental illness, mostly untreated, are responsible for 10 percent of all homicides. And mass killings by untreated mentally ill individuals occur several times each year. It is thus a remarkable and saddening saga--fifty years of going backward in our treatment of individuals with serious mental illness. Future historians will marvel at it and wonder how we allowed this slide toward barbaric neglect and cruel incarceration.
All of us who participated in mental illness treatment programs over the past half century must share the blame for this situation; indeed, we should all be ashamed. We can plead good intentions in our defense, but good intentions provide little comfort for those who have suffered because of our errors.
Darold Treffert, one of the few American psychiatrists who have tried to reverse the downhill course of psychiatric services in the past half century, described it correctly:
"It is not 'freedom' to be wandering the streets, severely mentally ill, deteriorating and getting warmth from a steam grate or food from a garbage can; that's abandonment. And it is not 'liberty' to be in a padded jail cell instead of a hospital, hallucinating and delusional, without treatment because that is all the law will allow."
Is there any possible way to get this train back on track? First, implementing Tim Murphy's Helping Families in Mental Health Crisis Act (H.R. 3717) would be a good start. Second, Congress should abolish the IMD (Institution for the Treatment of Mental Disease) exclusion. In fact, I personally believe that the federal government should get out of the mental illness treatment business altogether. They have been in this business since the passage of the CMHC legislation in 1963 and it has been all downhill. Let's give the responsibility - and the federal money--back to the states and then hold the governors accountable for the results. They cannot do worse than we are doing now. Third, there needs to be further modification of state involuntary treatment laws and increased use of assisted outpatient treatment (AOT) and conditional release so that the small number of seriously mentally ill individuals who need these kind of services can be treated before they end up homeless or incarcerated. These three steps alone would go a long ways toward improving the treatment system."
Thanks Dr. Torrey, for this and for all you are doing and have done to fight for decent treatment and housing for the severely ill. It must be terribly sad and frustrating to devote yourself so wholeheartedly to so righteous a cause and yet not be able to stem the tide of indifference, neglect, and foolish policy. We can all agree with most of Dr. Torrey's positions, but two have stirred considerable controversy, sometimes because they are inherently controversial, sometimes because he states them so categorically.
The most contentious issues are the value of antipsychotic medication and the occasional necessity of enforced treatment. Dr. Torrey's research and clinical experience has convinced him (as has mine, me) that proper use of medication for acutely psychotic and for recently stabilized individuals is absolutely essential in resolving symptoms and reducing the appreciable risk of relapse. Dr. Torrey and I also believe that quite rarely the coercive risks of applying external constraints to ensure needed medication far outweigh the much greater coercive risks that come when untamed psychosis leads to prison and/or homelessness.
Opposition to Dr. Torrey comes most heatedly from those who have had a personal experience of 'surviving' psychiatric illness despite what they believed to be a detrimental, coercive psychiatric treatment. Some in this camp categorically oppose all medication and all constraint- believing instead in the universal applicability of recovery models, empowerment, and peer support.
The seemingly large chasm between these opposing views largely results from the fact that one size cannot possibly fit all. The most enthusiastic supporters of the recovery approach are the people for whom it was optimal and they are entirely right in believing it is the best approach for them. But that doesn't mean it is safe or optimal for others who have more acute, severe, endangering, pervasive, and impairing symptoms which puts them at risk for prison, homelessness, chronicity and a terrible outcome if treatment is not promptly offered.
It is crucial to find a middle ground that will allow joint advocacy and caring for those most in need. This has been possible with Eleanor Longden of Hearing Voices http://m.huffpost.com/us/entry/4003317 and http://m.huffpost.com/us/entry/4038218 A future blog will hopefully find where there are points of agreement between Dr. Torrey and the Recovery Model. Indeed we should all feel ashamed of the current sorry state of affairs and work together to improve them.