Clinicians will need to be taught a new stepped approach to diagnosis that is the opposite of the “shoot from the hip” approach that insurance now requires and drug companies encourage. Definitive diagnosis should be made in the first session only in clear or urgent cases. For everyone else, the first several visits would be for fact finding, education, and to let nature take its course. Diagnosis would be made only after the dust has settled. This is the most direct and efficient way to stop diagnostic inflation in its tracks.17
STEPPED DIAGNOSIS
STEP 1—Gather baseline data.
STEP 2—Normalize problems: take them seriously, but reformulate positively as expectable responses to the inevitable stresses in life.
STEP 3—Watchful waiting: continued assessment with no pretense of a definitive diagnosis or active treatment.
STEP 4—Minimal interventions: education, books, computer-aided self-help therapy.
STEP 5—Brief counseling.
STEP 6—Definitive diagnosis and treatment.
Stepped diagnosis takes full advantage of the powerful healing effects of time, support, and placebos. In nonurgent situations, first-line diagnosis and treatment should be the least intensive, with a “step up” only when needed. Stepped diagnosis is cost-effective because it filters out situations where treatment will not be necessary and separates those who would benefit from psychiatric diagnosis from those who will do fine—or even better—on their own. It offers a tool for saving normality from psychiatry, and psychiatry from overdiagnosis and ridicule.
Taming Drumbeating
Every action has a reaction—diagnostic inflation and prescription drug abuse have gotten so far out of hand, and it is time for a pendulum swing toward better balance. There are three forces that together could powerfully push back against diagnostic inflation and possibly even reverse it. These are the professional organizations, the consumer advocacy groups, and the press. So far none has been sufficiently invested in diagnostic deflation, partly because each has been cleverly and systematically co-opted by the drug companies. In a fair and reasonable world, each would be on the front lines—fighting, not supporting, drug company marketing efforts. So far they have been on the wrong side of the line, but this could change rapidly, and they remain the hope of the future.
The medieval guilds were formed with two very different but compatible purposes in mind—to protect guild members from outside price competition and to protect buyers from poor quality products. Guilds were given a monopoly, but only on the condition they not abuse it and keep sacred the public trust. Modern mental health professional associations are guild derivatives but have broken the faith. They seem inclined to protect only their members and their staff bureaucracies, showing little regard for the preservation of quality or upholding the best interests of the public they are meant to serve. All of the mental health professional associations have remained remarkably passive in the face of massive drug overusage. None has raised much opposition to the recent false epidemics of childhood attention deficit disorder, autism, and bipolar disorder. Neutrality in these situations is not really neutral—it amounts to passive collaboration with bad diagnoses and inappropriate treatment.
It should be the ethical responsibility of professional associations to foster an open and informed public debate on mental health policy issues. The cynical view is that they fail to do so for reasons of self-interest—i.e., going with the flow of ever-expanding diagnostic inflation brings in more patients to treat and the chance for drug company subsidies. This may be part of it, but I think the problems go even deeper and are harder to solve than simple financial conflict of interest. The professional associations are too selfish, yes, but even worse, they are not very smart—as evidenced by the DSM-5 debacle. Parochial staff bureaucracies come to dominate their agendas, and they fail to see beyond their own narrow interests. The associations are often surprisingly ill informed about, and insensitive to, the patient care and public policy issues related to diagnostic inflation.
Can this change? I think so. Exposure of their extensive ties to drug companies has already forced medical associations to begin the process of divesting relationships and regaining independence. If anything good can come from DSM-5, it will be increased awareness that the highest loyalty of the guild has to be to the public, not to the guild members. Failing to produce quality means losing your monopoly. The American Psychiatric Association, having fumbled the diagnostic inflation ball on DSM-5, will likely be more cautious about carrying it in the future. It may even see the light and come finally to admit that diagnosis has become too loose and drug prescribing too promiscuous. Organizations can change if their incentives are aligned with public interest.
Consumer advocacy groups have done enormous good in furthering parity for mental health care, increasing funding for psychiatric research, improving services, providing support, and reducing stigma. Unfortunately, though, they have also become loyal but unwitting (and more believable) lobbyists for drug company positions. This is doubly problematic because they flunk the Caesar’s wife test of being above all reproach. Too much of their budgets are financed by drug companies. In Europe, consumer advocacy opposes excessive medication use rather than enabling it.
There is also another, more subtle conflict of interest. Organizations always strive for more members. The larger the consumer advocacy group, the stronger will be its political voice and financial clout. And the more people with the disorder, the less the stigma that attaches to it. Autism advocacy has done wonders, but a side effect is that perhaps half the people identified as autistic don’t really have the diagnosis. As it matures, consumer advocacy will become more aware of the risks of overdiagnosis and will better balance the benefits of large membership rolls against the risk that some of those inappropriately included will in the long run be more harmed than benefited.
Investigative journalism is perhaps the best defense against drug company hype but has become something of a newsroom luxury. Reporters too often simply parrot drug company press releases without digging deeper into the always more complicated reality. Breathless stories promote the false conclusion that research advances justify the notion that all problems are brain diseases. Less attention is given to the fact that drug companies are much more engaged in, and better at, marketing and political lobbying than they are at scientific research. The industry pipeline of new drugs has been pretty empty for some time, but the flow of power in Washington and in state capitals never runs dry. When companies receive huge fines for criminal activities, it is usually back-page news or buried altogether.
There is some cause for hope. The media has definitely caught on to the dangers of psychiatric diagnosis, perhaps because DSM-5 was so egregiously reckless and press insensitive. DSM-5 coverage was well informed, extensive, worldwide, persistent, and often excoriating. Incredibly indifferent to external criticisms by professional groups, DSM-5 finally did back down on many of its worst suggestions when these were scorched in the press. Big Pharma has also begun to take more hits as the impact of its excesses is increasingly felt by the most vulnerable—our kids,18 the elderly,19 the poor, and returning vets. The scandals of unchecked polypharmacy and iatrogenic overdose are also finally attracting the attention they deserve.
I would hope for a press that counters rather than echoes market forces, that monitors medical and pharmaceutical excess, and that finds a voice as public defender against diagnostic inflation and excessive treatment.20
Can We Deflate the Diagnostic Bubble?
Perhaps, but it won’t be easy. Economic inflation is easy to start, but very difficult to stop. Sadly, the same is true of diagnostic inflation. The momentum behind it now seems irresistible. DSM-5 threatens to turn inflation into hyperinflation. The drug companies will not easily surrender their strong monopoly stranglehold on a vulnerable and lucrative market. Politicians appear to be paralyzed by lobbying largesse, far from ready to enact appropriate external regulatory controls. Doctors prescribe r
eflexively. Patients accept claims gullibly. Professional associations either tacitly support or stand on the sidelines in the face of massive overusage of medication. Consumer groups have been co-opted.
Our diagnostic system needs to be protected from all the commercial and intellectual conflicts of interest—the publishing profits of APA, the drug company bottom line, the handouts given to professional associations and consumer groups, the eagerness of doctors to accept drug company perks, the love that experts feel for their pets. We need either to get the primary care doctors out of psychiatry or to teach them how to do it and give them sufficient time to do it properly.
The cures for inflation are simple and would be immediately effective if only we had the will to put them in place. But how to get the will, how to create the countermomentum. The DSM-5 fiasco has had one positive impact—alerting the press and public to the importance of getting psychiatric diagnosis right and the dangers of getting it wrong. This should be the beginning of a thorough public and political debate on how best to reform our system of psychiatric diagnosis and to protect it from all the possible corrupting forces. Finding a better sponsor for DSM-5 would be a great start. And the next obvious step would be to do what the rest of the world does—end direct-to-consumer advertising. Politicians won’t care unless the public does. And the public won’t care unless the media does. DSM-5 would have been a lot worse but for media pressure, which finally brought the APA leadership partially to its senses. Let’s hope the media are willing to take on Pharma and that public outrage and pressure results in sorely lacking political backbone. Diagnostic questions should be decided by what is best for the patient, not what is best for the doctor or the APA or Pharma or the consumer group.
We can do it. But will we?
CHAPTER 8
The Smart Consumer
Know thyself.
THE DELPHIC ORACLE
WHEN IT COMES to having a mental disorder, this is both the best of times and the worst of times. The best because there are so many effective treatments available and so many skilled clinicians. The worst because there is so much overtreatment of the people who don’t need it and so much undertreatment of the people who do—and so many unskilled clinicians providing inaccurate diagnoses and inappropriate treatments. You can’t trust our system for delivering mental health care to automatically work well for you, because it offers a crazy mix of good and bad options and is anything but a well-organized system. And curing diagnostic inflation through professional and regulatory changes will take some doing, won’t happen quickly, and may never happen at all.
So where does this combination of opportunity and risk leave you? I would recommend having the skeptical “buyer beware” attitude assumed by all smart and well-informed consumers. You should give the same care to starting a treatment as you would to buying a car or a house or selecting your friends or a spouse. The decision whether or not to take a psychiatric pill or enter into a psychotherapy is often life changing. Never do it casually or passively.
Don’t be daunted by having to play an important role in finding the treatment you need and avoiding the treatments you don’t. You are used to making smart and tough consumer choices in all the other aspects of your life and this is really no different. The array of options for psychiatric diagnosis and treatment has proliferated along with all the other excessive consumer choices that characterize modern life. There are dozens of possibilities when you have to choose which camera, which TV, which shampoo, and especially which box of cereal among those aligned in that imposing wall at the supermarket. Having so many options is both good and bad—more choices, but also more chaff. I will offer tips on how to negotiate what might otherwise seem to be a confusing labyrinth of care (and noncare) options so that you can find what works for you.
Working with the Clinician
Psychiatric diagnosis requires a collaboration between you and your mental health clinician. He can’t do it by himself. There are no objective laboratory tests in psychiatry, and therefore there is no way for anyone to diagnose your problems without your help. Here are things you can do to get the best result. First, be honest with yourself and with the clinician. It is no fun having to talk about psychiatric symptoms—particularly to a stranger. But accurate diagnosis is totally dependent on your complete openness and willingness to share your most embarrassing thoughts, feelings, and behaviors. However shameful or shocking your revelations may seem to you, be assured that they are part of the human condition and that the clinician will have heard similar (as well as much stranger and more embarrassing) descriptions numerous times before. It is the safest bet in the world that you are many times more judgmental of yourself than any clinician will ever be.
The key to psychiatric diagnosis is self-report, and this is impossible without careful and persistent self-observation. Start keeping a daily diary with a description of your symptoms as they arise. Note particularly the type of symptom, time of onset, severity, duration, level of functional impairment, stress, and the things in life that help you feel better or worse. Do your best to gather together as complete a record as possible of all past data that might inform your present diagnosis. It is especially important that you obtain copies of all your psychiatric and medical records. Until recently, it might have been difficult to gain access, but this is no longer the case. The records may sometimes be upsetting and/or inaccurate—so read them with strength and forbearance. Also know that if there are errors, you have the right to have them corrected. It is usually time-consuming and frustrating to get records, so having them ready well in advance gives you a head start.
When previous records are voluminous, it is helpful to maintain an updated chronological list of all the psychiatric medications you have ever taken—with dates, dosages, indications, response, and side effects. Also have a list of any other medications you are taking now or have taken in the past. Finally, maintain a chronological list of the names, telephone numbers, and e-mail addresses of all the mental health clinicians you have ever seen in the past and of any medical or psychiatric hospitalizations you have had. Keeping your own summaries helps to put things in perspective for you and ensures that important details won’t be lost. It also saves valuable and expensive time so that you and your clinician can most efficiently focus on the meaning of what is happening, rather than recounting the blow-by-blow history of all the past events.
Neither you nor your current clinician should blindly follow the diagnostic impressions and treatment plans of past clinicians—these may have been wrong at the time they were made or have become dated by the things that have happened since. But, whatever its limitations, the past record almost always contains material that will shed illuminating light on the present situation. The time spent in collecting and updating your record will be richly rewarded.
Learn everything you can about the history of your problems, the most pertinent DSM criteria sets, and the most likely differential diagnoses. Occasionally a clinician may feel threatened or be defensive if you seem to know too much. But unless you are being obnoxious about it, this is probably a sign that you might be better off with a different clinician. The best single predictor of a good outcome of treatment is a good relationship. Liking your clinician and feeling she understands you and your problems doesn’t guarantee she can help you, but it is a great start. If you don’t feel comfortable with a clinician, find someone else you can communicate with. And remember that collaboration is always a two-way street—for you to get the best result, you have to really put your heart into it. It is difficult having a psychiatric problem, but it doesn’t have to be tragic. People who take a matter-of-fact, information-seeking, businesslike, and collaborative approach to diagnosis and treatment planning usually wind up with the best outcomes.
How Can You Be Sure the Diagnosis Is Right?
Perhaps the easiest and least expensive way is to check out the diagnosis yourself. I used to recommend consulting the DSM criteria for assistance in this but have less fa
ith in DSM-5 because I think many of its suggestions will lead to overdiagnosis. The Internet has lots of good information, but many sites show clear signs of excessive diagnostic exuberance, often influenced by drug company marketing. There are many guides to psychiatric diagnosis for clinicians and patients that are more objective. I have written one myself that is meant to be a corrective to the excesses of DSM-5.1
The main things to check out are whether your symptoms closely fit the description of the disorder, have they lasted long enough to count, are they causing you considerable distress or impairment, and does it feel like they are just a temporary reaction to troubling events or are they more built in to your day-to-day life. You don’t have to form an opinion on this right away. Keep a diary, chart the course, and see how things develop. If your symptoms get better on their own within a reasonable period of time, the questions will have answered themselves. But be sure to get help if they hang around, get worse, and continue to cause trouble.
Suppose your clinician comes up with a diagnosis that makes no sense to you given your own research. He could be wrong, especially if it was a snap diagnosis made after a brief interview. Or you could be missing something that he is picking up. When there are inconsistencies, don’t be shy about politely asking the clinician to explain the rationale for her diagnosis and how she believes the criteria are met. Different clinicians often disagree on a diagnosis and it is often hard to tell who is right. Disagreement is particularly likely if you are young, your symptoms aren’t classic, or if your problem is on the boundary with normality. It is always easier to call a strike when the ball is right down the middle of the plate than if it cuts the corner.
Whenever you are in doubt, get a second opinion from a different clinician, or a third or fourth opinion. And also see what your family thinks. Second opinions are particularly useful if your first treatment doesn’t work and/or when there is any doubt at all about the diagnosis. My experience has been that some clinicians make the same diagnosis and offer the same treatment for almost every patient they see. Others develop an ephemeral enthusiasm for a particular diagnosis after attending a conference or meeting with a drug salesman. Too many clinicians go with the flow of the latest fad in diagnosis or the newest “wonder” drug that hits the market. You can be a useful restraining influence. And always expect your clinician to provide commonsense rationales and explanations for any diagnostic decision, and question them carefully if they do not. If the clinician doesn’t have an open mind, if he gets mad, or if he can’t explain the diagnosis in a way that makes sense to you, it may be a good idea to get another opinion.
Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274) Page 24
