CHAPTER 6
Fads of the Future
Pride goeth before the fall.
PROVERBS 16:18
DSM-5 HAS JUST been published—not a happy moment in the history of psychiatry or for me personally. It risks turning diagnostic inflation into hyperinflation—further cheapening the currency of psychiatric diagnosis and unleashing a wave of new false epidemics.1,2 The economic equivalent would be printing up loads of new money when prices are already rising way too fast. DSM-5 is a cautionary tale of soaring ambition, poor execution, and a closed process. The good news is that a last-minute reform effort, instigated by a new leadership team at the American Psychiatric Association, eliminated about one third of the worst changes that would have opened the floodgates of diagnostic inflation even further. The bad news is that, despite this, DSM-5 kept the other two thirds and will significantly add to, not correct, the already existing problems of overdiagnosis and overtreatment.3
Ambition—Icarus Flies Too High and Flames Out
In preparing any DSM, it is wise to be extremely modest—underpromise and then work like hell to overperform. DSM-5 got this backward—it wildly overpromised, then failed to meet minimal performance standards.
The excessive DSM-5 ambition to effect a paradigm shift in psychiatric diagnosis expressed itself in three different initiatives. First was the unrealistic goal of transforming psychiatric diagnosis by somehow basing it on the exciting findings of neuroscience. This would be wonderful were it possible, but the effort failed for the obvious reason that it is still a bridge too far. Neuroscience will inform everyday psychiatric diagnosis only at its own slow and steady pace; it cannot be rushed forward before its time—and that time is decidedly not yet.
Ambitious goal two was to expand the boundary of clinical psychiatry—copying other specialties of medicine by pursuing the brave new world of early illness identification and preventive treatment. The irony, of course, is that excessive early screening is just now being discredited across many of the medical specialties that had served as the exemplars for DSM-5.
The third DSM-5 ambition is the least dangerous and most attainable. The idea is to make psychiatric diagnosis more precise by quantifying disorders with numbers, rather than merely naming them. Done well, this would be a good idea—but DSM-5 developed unnecessarily complex dimensional ratings that could never be used clinically.4,5
Icarus flew too close to the sun, melted his wings, and fell into the sea. DSM-5 tried to achieve three impossibly ambitious paradigm shifts in psychiatry and failed in all three. The messy process undeservedly tarred the credibility of psychiatry—the field is a lot better than anyone would assume watching the DSM-5 follies unfold. Trying to be great prevented DSM-5 from being good enough.6
Methods Matter
DSM-5 was not prepared with method in mind. Distracted by fantasies of creativity, it ignored mundane necessities like efficiency, punctuality, consistency, and quality control. Doing a DSM is not conceptually difficult. The tough part is attending to all the organizational details. It requires constant monitoring of the work groups to ensure they are following the common goal and preparing a consistent product. The organizational principle that brought cohesion to DSM-III and DSM-IIIR was the omnipresent leadership of Bob Spitzer, who chaired every work group, nursed every detail, and wrote every word. For DSM-IV, the glue was a set of standard operating procedures. Every methodological issue was spelled out in detail well before the work began. There were explicit criteria for making changes and a centralized method for the literature review, data reanalyses, and field trials. In contrast, DSM-5 was a hodgepodge of disorganized method. Work groups were instructed to be innovative but were provided no clear marching orders that would cohere their separate productions. Not surprisingly, the different groups varied widely in the methods, thoroughness, quality, impartiality, and clarity of their reviews. Perhaps most puzzling was the inability of the DSM-5 to plan ahead or meet its own deadlines. The original publication date had to be pushed back two years. Even with this added time there was a mad scramble at the end—and DSM-5 had to cancel its crucial quality control step when work fell so far behind there was no time left to complete it.
There is a much better way. Evidence-based medicine has made enormous strides in specifying how research findings should be translated into clinical practice. The DSM-5 literature reviews should have been conducted by independent evaluators who would have had the dual advantages of special expertise in evidence-based methods and impartiality, with no pet proposals to protect. Work group members are experts on their diagnoses, but not experts in thorough and impartial literature review and risk/benefit analysis. There is also no possible excuse for all the missed deadlines and for canceling much needed quality control.
To Change or Not to Change
Psychiatry’s research revolution is exciting only on the basic science side (elucidating brain function); we are undeniably in a deep rut when it comes to progress in clinical diagnosis and treatment. There has been no real advance in diagnosis since DSM-III in 1980, and no real advance in treatment since the early 1990s. Psychiatric diagnosis doesn’t need much updating, much less a paradigm shift. Given a steady state, a pragmatist will move carefully and only in small steps. If something new comes along that brings obvious value at low risk, grab it—but don’t change just for the sake of being different.7
Playing with the diagnostic system can lead to all sorts of unintended consequences. If we can’t be confident about the impact of something new, it is better not to change the old. Even if you check things out as carefully as you can, the future is impossible to predict. The only safe bet is that if something can possibly go wrong, it probably will. Recent DSM history teaches us that whatever changes are made will be subject to unexpected misinterpretation and misuse under pressure from drug companies, school services, disability requirements, and the legal system. If there is any possible loophole with an incentive for gain, someone will drive a truck through it. Having withstood time’s test, the old tried and true should be changed only for very good cause.8
Aside from risk, changes come at considerable cost. Most expensive is the broken continuity between the findings of past and future research. How can one interpret differences in results of studies of the same diagnosis done before versus after the change? Arbitrary changes are also upsetting to clinicians, patients, teachers, students, and administrators. Everything would seem to favor a look-before-you-leap prudence. The DSM-5 leadership initially took just the opposite tack—valuing change seemingly for the sake of change accompanied by lack of interest in understanding why things were as they were. The rhetoric supporting this radical position was the need to have the diagnostic system reflect rapid advances in science—a misleading conflation of the growth spurt in basic science with the dead stall in clinical science.9
Field Tests That Fail the Test
The DSM-IV trials were funded by the National Institute of Mental Heath after an extensive external peer review of their scientific method and merit. This was the most meticulously designed and carefully performed trial ever done. And yet we missed predicting the epidemics in ADHD, autism, and bipolar disorder. APA failed to attract external research funding for the DSM-5 field trials and had to put up more than $3 million of its own money. The design of the study was created behind closed doors and never subjected to the much-needed peer review that might have corrected its obvious flaws. As a result, the DSM-5 field trials tested the wrong question, in the wrong way, in the wrong settings, and with an unrealistic deadline. The results are impossible to interpret—a waste of time, money, effort, and talent.
DSM-5 asked the wrong question, focusing itself exclusively on the reliability of its new diagnostic proposals (whether psychiatrists can agree) and completely avoiding the much more important questions of practical utility: Will a new diagnosis help patients or harm them? For this, you need data on rates, accuracy, efficacy, and safety. And you need to get beyond readily available, but
unrepresentative, samples provided by university hospitals and instead study how the criteria will work in real-life settings. For reasons I will never understand, DSM-5 avoided asking the questions that really mattered.
Then it got worse. The design of the field trial was impossibly cumbersome to perform and lent itself to administrative confusion and sloppy implementation. It was obvious on first reading that the timeline was absurdly truncated—the trial would take at least twice as long as allocated. When finally the field trial limped to its much belated completion, the results it produced were an embarrassment. The reliability of the diagnoses tested in the DSM-5 field trial were far below what had been achieved in the past and what could be achieved in the present if the project had been conducted competently. The taint of poor reliability stained even old standbys like major depressive disorder that had stood up to hundreds of previous tests conducted over forty years.
The original plan had included a quality control step. If diagnoses had poor reliability in Stage 1 (as many did), Stage 2 (rewriting and retesting) would correct them. But Stage 1 came in so late, there was no time left for Stage 2—if the 2013 publication date were to be met as required to meet APA budget projections for publishing profits. This was the moment of truth for DSM-5—a compelling test of its integrity.10,11
APA flunked—instead of admitting that its reliability results were unacceptable and seeking the necessary corrections that might meet historical standards, the goalposts were moved. Declaring by fiat that previous expectations were too high, DSM-5 announced it would accept agreements among raters that were sometimes barely better than two monkeys throwing darts at a diagnostic board. The essential Stage 2 step of quality control was surreptitiously canceled and a premature DSM-5 was rushed quickly to the printers to get sales moving and the cash register ringing. For me, this was perhaps the most dispiriting decision in the whole disappointing history of DSM-5. APA was not only sacrificing its own credibility but also putting patient safety at risk and unfairly tainting the whole mental health enterprise.
Follow the Money: Profits and Losses
APA has spent an astounding $25 million on DSM-5. I can’t imagine where all that money went. DSM-IV cost only about $5 million, more than half of which came from outside research grants. Even if the DSM-5 product were made of gold instead of lead, $25 million would be wildly out of proportion. The rampant disorganization of DSM-5 must have caused colossal waste.
APA can’t afford this kind of excess. It is in deficit, has reserves below what are recommended for a nonprofit, is rapidly losing members, has fewer people attending its annual meeting, and can no longer rely on questionable subsidies from the drug industry. The DSM publishing cash cow was its last hope to save the budget—forcing a publication schedule that couldn’t be met with a quality product.
All along, APA has treated DSM-5 more as private publishing asset than as public trust. First there were confidentiality agreements to protect “intellectual property,” then an inappropriately aggressive protection of trademark and copyright, and finally the unseemly rush to prematurely publish because this was necessary to fill a budgetary hole. APA has an impossible conflict of interest in its dual role as fiduciary of the diagnostic system (a public trust) and beneficiary of publishing profits. Guild interest should never trump public interest—but it has.
Fads of the Future
DSM-5 has included several sure fire fads of the future. All have symptoms that are part of everyday life and commonly encountered in the general population. None has a definition precise enough to prevent the mislabeling of many people now considered normal. None has a treatment proven to be effective. All will likely lead to much unnecessary, and sometimes harmful, treatment or testing. The aggregate effects will be overdiagnosis, unnecessary stigma, overtreatment, a misallocation of resources,12 and a negative impact in the way we see ourselves as individuals and as a society.13
Turning Tantrums into Psychiatric Disorder
Child psychiatrists often dare to go where no one has gone before—and children wind up paying the price. They keep inventing new ways to wildly overdiagnose psychiatric illness in kids. Previously I mentioned a study that found 83 percent of kids qualify for mental disorder diagnosis by the time they are twenty-one. Now the child researchers have taken it a step further—introducing a new DSM-5 diagnosis that may get the number even closer to 100 percent. First called “temper dysregulation,” then rechristened with the tongue-twisting disruptive mood dysregulation disorder (DMDD); the idea of turning temper tantrums into a mental disorder is terrible, however named. We should not have the ambition to label as mental disorder every inconvenient or distressing aspect of childhood.
The experts working on DSM-5 meant well. Recognizing the catastrophic misdiagnosis of childhood bipolar disorder, they hoped to replace it with DMDD, which doesn’t carry the same implication of lifetime illness and is less likely to be overmedicated with obesity-inducing drugs. This was a silly solution just on the face of it. The child experts were missing an obvious risk. Instead of simply replacing childhood bipolar, DMDD will likely become wildly overinclusive, used to describe all manner of kids who require no diagnosis at all or a more specific one. Kids have only so many ways of responding to the world and frequently resort to temper tantrums as a way of communicating anger and distress. Almost always, this is not indicative of a mental disorder but rather represents a developmental stage or a temperamental variant or a response to stress or a symptom of any number of mental disorders. “Run-of-the-mill” temper tantrums are usually best ignored; severe and persistent tantrums may require evaluation to determine their underlying cause; but temper tantrums by themselves should never be given the status of a separate official diagnosis. By turning a common, nonspecific symptom into a mental disorder, DMDD is likely to increase inappropriate antipsychotic use, not reduce it.
The research evidence on DMDD is almost nonexistent, based only on a few years of work by just one research group.14 Nothing is known about its likely prevalence in the general population of kids; whether it can be distinguished from normal temper tantrums; its relation to all the many other disorders that present with angry outbursts; its course; its preferred treatment; and the trade-off between treatment response and adverse complications.
The criteria for diagnosing DMDD were pretty much conjured out of thin air and are not nearly restrictive enough. While trying to rescue kids currently misdiagnosed as bipolar, it will undoubtedly open the door to the misdiagnosis of normal kids who are going through a stage or are normally temperamental. There is no bright line distinguishing normal temper tantrums from abnormal ones. And there is enormous variability in what is considered appropriate across different families, subcultures, and developmental periods. Tantrums are so common precisely because they have had great survival value—natural selection favors the squeaky wheel, providing it with extra grease. Baby chimps dominate their parents just the same way.
The way the diagnosis of DMDD is made will vary greatly, depending on the tolerance of the clinician, family, school, and peer group. The “stresses” that trigger the episodes may be minimal in some cases but remarkably provocative and causing readily understandable temper outbursts in others. Family fights may be translated into individual psychopathology. In the heat of battle, it will doubtless be forgotten that most kids will outgrow their developmental or situational temper problems and gradually acquire self-control and better ways of getting needs met. My experience tells me that this unstudied diagnosis may well become very popular and will spread to normal kids, who would do a lot better without it.
Atypical antipsychotic drugs may be helpful in reducing some forms of explosive temper outbursts. But their beneficial effects for the few must be balanced against their very great dangers when used inappropriately for the many. Even in severely disturbed kids, there are serious clinical and ethical questions, but medicine may be needed in extremely exigent circumstances. In kids who have disturbing (but essentially “
normal”) developmental or situational storms or are irritable for other reasons (e.g., substance use, ADHD), antipsychotics are a disastrously bad choice. DMDD could turn out to be the most dangerous epidemic caused by DSM-5.15 The sensible thing would have been to face down childhood bipolar directly with a bold warning against it in DSM-5 and by carrying out a campaign to reeducate physicians, parents, and teachers previously brainwashed by pharmaceutical hype. Fighting fire with fire sometimes leads to more fire.
The Forgetting of Normal Aging Becomes a Disease
My wife, Donna, and I joke that we are in a race to the bottom to see who will become demented first; the loser gets to be caretaker. Trouble is, the joke is not all that funny and is getting less so as we both approach the finish line. We constantly forget where we have put keys, wallets, glasses, mail, books, papers, computers, BlackBerrys, clothing, phone numbers—you name it—and usually we blame each other for playful or malicious misplacing. We forget appointments, birthdays, movies seen last night, news just read, where the car is parked, or other recent events in our lives. I get lost frequently in the larger world; she is sometimes befuddled a few blocks from home. We are both terrible at remembering people’s names, but at least Donna can still do faces.
Sounds pretty bad, and I guess it is. There are a few consolations. Donna manages to pay the bills, do the taxes, book the trips, organize the household, edit this book, and be the best-informed and smartest person I know. I can still write blogs and books, give talks, and give you the scoop on the Peloponnesian War. Most comforting, the people we know in our age group all have very similar tales of woe. None of us can see as well, hear as clearly, chew as efficiently, sleep as soundly, run as fast, do as many push-ups, climb as many flights, or hold as much water as our younger and stronger selves. This physical decrement with age doesn’t get defined as sickness because it is expectable and inevitable.
Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274) Page 19