Dedication
To Donna—my partner in every word
Contents
Dedication
Preface
Part I: Normality Under Siege
1. What’s Normal and What’s Not?
2. From Shaman to Shrink
3. Diagnostic Inflation
Part II: Psychiatric Fads Can Be Bad for Your Health
4. Fads of the Past
5. Fads of the Present
6. Fads of the Future
Part III: Getting Back to Normal
7. Taming Diagnostic Inflation
8. The Smart Consumer
9. The Worst and the Best of Psychiatry
Epilogue
Acknowledgments
Notes
Index
About the Author
Copyright
About the Publisher
PREFACE
I can calculate the movement of stars but not the madness of men.
ISAAC NEWTON
SOMETIMES YOU CAN get into a whole lot of trouble just minding your own business at a cocktail party. The time was May 2009. The party was a gathering of psychiatrists attending the annual meeting of the American Psychiatric Association. The place was the Asian Art Museum in San Francisco. The trouble was getting stuck in a bitter, public controversy about the nature of “normal” and the proper role of psychiatry in defining it.
I happened to be in town for something else and really had no interest in the meetings, but the party was a nice chance to catch up with old friends. For almost a decade, I had been pretty much a dropout from psychiatry—retiring early to care for my ailing wife, to babysit my mob of grandkids, to read, and to be a beach bum. Previously, my work life had been driven, probably qualifying as hyperactive. I led the Task Force that developed DSM-IV and also chaired the department of psychiatry at Duke, treated many patients, did research, and wrote some books and papers. It seemed like I was always chasing the clock and losing the race. Even a furtive look at the sports section of the New York Times felt like a stolen and forbidden pleasure. It was now a delight to simply kick back, read Thucydides, feel the sun on my face and the wind in what was left of my hair. No e-mail address, few phone calls, and absolutely no responsibilities beyond my family.
I have only one superstition—an irrational, but abiding, belief in the law of averages, that things equal out in the end. I know they don’t—but superstitions die hard. I think the probability gods were bored the night of the party and decided to use me for their entertainment. Perhaps they had calculated that my life had become too carefree. Why not even the score by throwing my way a few chance tranquility-disrupting conversations? Within an hour, my comfortable sideline perch was lost, and I was forced to take sides in what has become a civil war for the heart of psychiatry—fighting a mostly losing battle to protect normality from medicalization and psychiatry from overexpansion.
Why me and why that night? It happens that several of my friends were bubbling over with excitement about their leading roles in preparing DSM-5. They could talk of little else. DSM stands for Diagnostic and Statistical Manual. Until 1980, DSMs were deservedly obscure little books that no one much cared about or read. Then DSM-III burst on the scene—a very fat book that quickly became a cultural icon, a perennial best seller, and the object of undue worship as the “bible” of psychiatry. Because it sets the crucial boundary between normality and mental illness, DSM has gained a huge societal significance and determines all sorts of important things that have an enormous impact on people’s lives—like who is considered well and who is sick; what treatment is offered; who pays for it; who gets disability benefits; who is eligible for mental health, school, vocational, and other services; who gets to be hired for a job, can adopt a child, or pilot a plane, or qualifies for life insurance; whether a murderer is a criminal or a mental patient; what should be the damages awarded in lawsuits; and much, much more.
Having worked for twenty years on the periodically updated editions of the DSM (including DSM-III, DSM-IIIR, and DSM-IV), I knew the pitfalls and was wary about the risks inherent in any revision. In contrast, my friends were new to the game and excited about their role in preparing DSM-5. They intended to add many new mental disorders and to loosen the rules on how to diagnose the existing ones—they were overvaluing hoped-for benefits, blind to the downsides.
I understood their enthusiasm and eagerness to make a difference. Back in 1987, a week after finding out I would lead the DSM-IV effort, I took a long walk on the beach. I am not usually a person given to brooding, but I had much to think about. For about an hour, I felt an exhilarating sense of power as I plotted possible ways to change and improve psychiatry. My concern was that psychiatric diagnosis had come too far, too fast, and was changing too rapidly—there were too many categories and too many people being diagnosed. My three bright ideas were to raise the bar for disorders that seemed too easy to diagnose, to collapse together or eliminate the disorders that didn’t make much sense, and to describe personality by flexible numbers, not rigid names.
In the second hour, reality set in and forced me to shoot down every one of my own pet projects. On reflection, I realized that in trying to correct problems I’d be creating new ones. And, more to the point, I realized that there was no reason why I (or anyone else) should trust me or my pet ideas. All changes to the diagnostic system should be science driven and evidenced based, not influenced by my personal whims or anyone else’s. The method for doing DSM-IV needed to emphasize checks and balances in order to protect against individuality, arbitrariness, and diagnostic creativity. We would require that new proposals be subjected to a probing review of the scientific literature meant to focus on its risks and pitfalls. There would be painstaking data reanalyses and field trials. We would deep-six everything risky and/or without clear scientific merit. My hunch that high standards would eliminate almost all changes turned out to be true—there weren’t compelling scientific data to back up the many proposals we eventually received. The basic science of psychiatry was daily coming up with exciting insights into how the brain works, but none of this translated one bit into how we should diagnose and treat patients.
I knew that we couldn’t afford mistakes in DSM-IV, even small ones. DSM had become too powerful for its own good and for society’s. Even seemingly minor changes could have a disastrous impact. And now DSM-5 seemed poised to make some really big errors. In aggregate, the new disorders promoted so blithely by my friends would create tens of millions of new “patients.” I pictured all these normal-enough people being captured in DSM-5’s excessively wide diagnostic net, and I worried that many would be exposed to unnecessary medicine with possibly dangerous side effects. The drug companies would be licking their chops figuring out how best to exploit the inviting new targets for their well-practiced disease mongering.
I was keenly alive to the risks because of painful firsthand experience—despite our efforts to tame excessive diagnostic exuberance, DSM-IV had since been misused to blow up the diagnostic bubble. Even though we had been boringly modest in our goals, obsessively meticulous in our methods, and rigidly conservative in our product, we failed to predict or prevent three new false epidemics of mental disorder in children—autism, attention deficit, and childhood bipolar disorder. And we did nothing to contain the rampant diagnostic inflation that was already expanding the boundary of p
sychiatry far beyond its competence. If a cautious and generally well-done DSM-IV had probably resulted in more harm than good, what were the likely negative effects of a carelessly done DSM-5, driven by its grand but quixotic ambition to be “paradigm shifting”?
The stakes were too high for me to ignore—both for the mislabeled new “patients” and for our society. Because of diagnostic inflation, an excessive proportion of people have come to rely on antidepressants, antipsychotics, antianxiety agents, sleeping pills, and pain meds. We are becoming a society of pill poppers. One out of every five U.S. adults uses at least one drug for a psychiatric problem; 11 percent of all adults took an antidepressant in 2010;1 nearly 4 percent of our children are on a stimulant2 and 4 percent of our teenagers are taking an antidepressant;3 25 percent of nursing home residents are given antipsychotics.4 In Canada between 2005 and 2009, the use of psychostimulants went up by 36 percent, and SSRIs by 44 percent.5
Loose diagnosis is causing a national drug overdose of medication. Six percent of our people are addicted to prescription drugs, and there are now more emergency room visits and deaths due to legal prescription drugs than to illegal street drugs.6 When their products are used carelessly, the drug companies can be as dangerous as the drug cartels. A case in point: Since 2005 there has been a remarkable eightfold increase in psychiatric prescriptions among our active duty troops. An incredible 110,000 soldiers are now taking at least one psychotropic drug, many are on more than one, and hundreds die every year from accidental overdoses.7
Psychiatric meds are now the star revenue producers for the drug companies—in 2011, over $18 billion for antipsychotics (an amazing 6 percent of all drug sales); $11 billion on antidepressants, and nearly $8 billion for ADHD drugs.8 Expenditure on antipsychotics has tripled,9 and antidepressant use nearly quadrupled from 1988 to 2008.10 And the wrong doctors are giving out the pills. Eighty percent of prescriptions are written by primary-care physicians with little training in their proper use, under intense pressure from drug salespeople and misled patients, after rushed seven-minute appointments, with no systematic auditing.11
There is also a topsy-turvy misallocation of resources: way too much treatment is given to the normal “worried well” who are harmed by it; far too little help is available for those who are really ill and desperately need it. Two thirds of people with severe depression don’t get treated for it, and many suffering with schizophrenia wind up in prisons. The writing is on the wall. “Normal” badly needs saving; sick people desperately require treatment. But DSM-5 seemed to be moving in just the wrong direction, adding new diagnoses that would turn everyday anxiety, eccentricity, forgetting, and bad eating habits into mental disorders. Meanwhile the truly ill would be even more ignored as psychiatry expanded its boundaries to include many who are better considered normal.
They say the road to hell is paved with good intentions and bad unintended consequences. I was shocked by the naïve enthusiasm of the people working on DSM-5. Where they saw golden opportunities, I saw grave risks. Diagnostic exuberance can be bad for our health—as individuals and as a society.
By far the most disturbing conversation was with one of my oldest friends in psychiatry—a man of wisdom, experience, and integrity whose entire career had been dedicated to reducing the suffering caused by schizophrenia. He was convinced that DSM-5 could make a game-changing difference by introducing a new diagnosis called “psychosis risk syndrome” that would encourage the early identification and preventive treatment of youngsters who might otherwise eventually become schizophrenic. My friend wanted to provide an ounce of early prevention that could substitute for a pound of later cure. Once the brain has already become sick, it is harder to make it well again—the more practiced are the circuits generating delusions and hallucination, the more difficult it will eventually be to turn them off. How wonderful then to prevent schizophrenia altogether, or failing that, at least to reduce the overall burden of the illness.
My friend’s goal was noble, but there were five compelling strikes against it. Strike 1: most people getting the scary-sounding diagnosis “psychosis risk” would in fact be mislabeled—in the normal course of events, only a very small proportion would ever become psychotic. Strike 2: there is no proven way to prevent psychosis, even in those really at risk for developing it. Strike 3: many people would suffer collateral damage—receiving unnecessary antipsychotic drugs that can cause obesity, diabetes, heart disease, and likely a shortened life expectancy. Strike 4: think of the stigma and worry caused by the completely misleading implication that psychosis is just around the corner. Strike 5: since when is having a “risk” the same as having a “disease”? I tried but failed to change his mind, or even to open it the slightest bit. “Psychosis risk” was off and running. My friend’s dream would surely cause a nightmare of disastrous unintended consequences.
As I drifted around the party, I met many other friends working on DSM-5 who were similarly excited by their pet innovations and soon discovered that I personally qualified for many of the new disorders that were being suggested by them for inclusion for DSM-5. My gorging on the delectable shrimp and ribs was DSM-5 “binge eating disorder.” My forgetting names and faces would be covered by DSM-5 “minor neurocognitive disorder.” My worries and sadness were going to be “mixed anxiety/depressive disorder.” The grief I felt when my wife died was “major depressive disorder.” My well-known hyperactivity and distractibility were clear signs of “adult attention deficit disorder.” An hour of amiable chatting with old friends, and I had already acquired five new DSM diagnoses. And let’s not forget my six-year-old identical twin grandsons—their temper tantrums were no longer just annoying; they had “temper dysregulation disorder.”
Clearly DSM-5 would make a mess. What to do? I had previously declined several requests to have a say. Bob Spitzer, the great psychiatric innovator who had been most responsible for creating DSM-III, had for years been sounding loud public alarms. He was upset that the American Psychiatric Association was forcing the people working on DSM-5 to sign confidentiality agreements intended to protect APA’s “intellectual property.” Publishing profit should never trump the transparency needed to produce a safe and quality DSM. Bob was dead right, and I knew it. He had often asked for my support in his efforts to help get DSM-5 on the right track, but to my shame, I had repeatedly refused to speak up. My lifelong inclination has always been to steer clear of controversy, and this one promised to be particularly unappealing. I also felt it was bad form to comment on the work of my successors, and besides, I knew Bob to be a good and tireless fighter who could more than hold his own in public debate.
But the disturbing conversations at the party finally shook my complacency and forced me into the fray. It was not just a matter of DSM-5 having a closed and secretive process; it would likely produce a very dangerous product. If “psychosis risk” made it into DSM-5, innocent kids might become obese and die early receiving unnecessary medication for a fake diagnosis. DSM-5 was going to create public-health problems, and the public needed to have a say. I realized it would be selfish and cowardly to cop out with the excuse that Bob alone could do all the heavy lifting. I would have to risk friendships, break ranks with organized psychiatry, and come off my beloved beach. Janet Williams, Bob’s wife and closest collaborator on DSM-III, also happened to be at the party. I walked over and told her that Bob could count me in. DSM-5 was too important to be left in the hands of a group of well-meaning, but badly misguided, “experts.”
It is now four years later. I have spoken to the APA leadership; written four warning letters to the APA Trustees; posted countless blogs; published numerous editorials and papers; given talks at professional and public meetings and appeared on radio and television—all warning about the risks that DSM-5 will mislabel normal people, promote diagnostic inflation, and encourage inappropriate medication use. I have not been alone in trying to save normal. Many other individuals, mental health organizations, professional journals, and the press ha
ve loudly sounded the very same alarm. We have had some positive impact—at the eleventh hour, DSM-5 dropped some of its most dangerous proposals. But overall we failed. DSM-5 pushes psychiatric diagnosis in the wrong direction, will create new false epidemics, and promotes even more medication misuse. The right goal for DSM-5 would have been diagnostic restraint and deflation, not a further unwarranted expansion of diagnosis and treatment.
This book is my reaction to the excesses—part mea culpa, part j’accuse, part cri de coeur. It provides an insider’s despairing view of what has gone wrong and also offers a practical road map back to a safe and sane psychiatry. My goal is not only to help “save normal,” but also to help save psychiatry. Psychiatry is a noble and essential profession, sound at its core, and extremely effective when done well. Our outcomes match or exceed what is achieved by most other medical specialties.12 And being a mental health caregiver is a special privilege—we get to know our patients intimately, console their sorrows, and find ways to help them help themselves. We can cure many, help most, and provide compassion and advice for all. But psychiatry must stay within its proper competence and stick to what it does best—helping people who really need and can most benefit from our efforts. We should not be making patients of people who are basically normal and ignoring those who are really sick.
Psychiatry is certainly not alone in its overreaching—we are just a special case of the bloat and waste that characterize all of U.S. medicine. Commercial interests have hijacked the medical enterprise, putting profit before patients and creating a feeding frenzy of overdiagnosis, overtesting, and overtreatment. We spend twice as much on health care as other countries and have only mediocre outcomes to show for it. Some of our citizens are harmed by too much medical care, others by shameful neglect. Medicine and psychiatry both stand greatly in need of taming, pruning, reformulation, and redirection.
Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274) Page 1