Last month, in a debut surrounded by controversy, the American Psychiatric Association (APA) released the 5th version of its Diagnostic and Statistical Manual, the book that contains listings of all the psychiatric diagnoses.
Criticism came from several fronts. Were the changes scientifically based? Would criteria loosen, making psychiatric diagnoses even more commonplace? Would everyone and their neighbors and their kids and their kids’ dog be put on psychotropic drugs? (Mostly yes, mostly no, and definitely not… I hope).
The truth, which I will do my best to write about here, does not seem nearly so scary as the headlines. I’m am not an expert on the DSM-5, nor am I a politician. I am a psychiatry resident in my final year of training with about five years of experience treating patients. I am writing this article because I got frustrated seeing so much misinformation, often from seemingly reputable sources, because sensationalist headlines get more clicks.
Even Allen Frances, the former chair of the DSM-IV committee (which he reminds you of an awful lot), seems to have an ax to grind. He’s running around telling everyone how the DSM-5 is going to hurt patients and pad the pockets of drug companies, but appears more concerned with making a career out of his political message than he does about clinical care. I tend to be suspicious of anyone who has a really, really strong opinion about something, because when you get so tied up in your agenda you may fail to acknowledge evidence contrary to your point of view.
I’m not here to argue that the DSM-5 is perfect, or that the field shouldn’t aspire to do better, or that harm hasn’t come from misdiagnosis. I’m here to say that 1) Our ability to have a good diagnostic system is limited by our scientific knowledge, and 2) the DSM-5 is far from perfect, but is not too far from the best we can do with what we currently know.
What is the DSM-5?
The DSM-5 is the 5th major iteration of the Diagnostic and Statistical Manual, and contains listings of the criteria for various psychiatric disorders. So for example, it describes the symptoms that would need to be present for a person to be diagnosed with schizophrenia, bipolar disorder, major depressive disorder, etc.
The DSM is sometimes referred to as the “Bible” of psychiatry, but this is a poor comparison. The DSM is not meant to be accepted as fact or dogma, but instead is a “living document” meant to be interpreted in light of rapidly changing clinical and scientific knowledge. So, it’s less Bible, more Bill of Rights.
The DSM does not replace the very important human, personal interaction necessary to diagnose and treat a person with a mental disorder. In fact, most psychiatrists rarely refer to it. It does not qualify a layperson with no medical or psychiatric knowledge to diagnose their friends at parties. Allow me to quote the DSM-5 itself:
“Use of DSM-5 to assess for the presence of a mental disorder by nonclinical, nonmedical, or otherwise insufficiently trained individuals is not advised.”
The practice of psychiatry is a challenging, thrilling, complex profession. It is an honor to hear such intimate, personal stories from patients and be in the position to help them. One learns how to practice psychiatry in a professional, responsible way from years of school and work with patients. One does not learn how to practice psychiatry from reading the DSM-5.
Stigma – the thorn in the DSM’s side
Unfortunately, unlike any other medical specialty, psychiatry is plagued with a very special level of stigma, and a lot of the criticism directed at the DSM-5 is actually directed toward the field of psychiatry as a whole.
In May I was up in San Francisco at the annual APA conference and was surprised to see that the event was being protested. I commented to a friend that I couldn’t imagine protesters running around the annual conferences of, say, endocrinology or orthopedic surgery, with the same fervor.
Later I saw a group of the protesters huddled together, smoking feverishly – I wanted to comment that cigarettes would probably kill them a lot faster than Zoloft, but resisted.
And recently I was thinking of getting my website professionally redesigned and sent out a few emails. One relatively well-known web designer responded that he wouldn’t work with me because I’m a psychiatrist and he “disagreed” with the field of psychiatry. (I’ll tell you what, Mr. Web Designer – if you ever are suffering and need help, I’ll still work with you).
The topic of stigma is too large and too important for me to try to cram into this post, but I bring it up because the release of the DSM-5 has been used as an opportunity by anti-psychiatry groups to get a little louder, which makes me both frustrated (at some of the more idiotic and irresponsible accusations) and sad (that some people have had such negative experiences with psychiatry that that they want to throw the whole thing out).
On the frustrating side, in my research for this article I perused some of the 1-star reviews of the DSM-5 on amazon, and saw some dangerously misleading comments:
“When these kids are depressed or angry or anxious… the DSM tells us they have a “mental disorder” and that their brains are broken and that they need drugs to ‘rebalance their brain chemicals.’”
“It encourages the use of psychoactive medications as psychiatrists’ default treatment recommendation and derogates the use of psychotherapy to help persons in distress.”
“With a a DSM5 and drug brochures I could be a psychiatrist, giving patients 10 minutes every 6 weeks to explain their complex emotional and cognitive troubles, most of which are normal parts of the human experience.”
And am I naive in thinking that to review a book, one should have, you know, at least read it?
To put the facts straight: The DSM-5 talks only about diagnoses and says nothing about treatment (or “brain chemicals,” for that matter), the DSM-5 does not recommend drugs over therapy (again, it says nothing about treatment), normal parts of human experience are by definition not a part of mental illness (more on that later) and owning a DSM-5 does not make you a psychiatrist (or else I went to school for 12 years for no reason…).
On the sad side, many people do have good reasons to be frustrated with psychiatry. The criteria for diagnosis are subjective, and therefore depend on the skill of the psychiatrist using them. And there are times when a person diagnosed as mentally ill may be held in a hospital or medicated against their will. Sometimes people are offered medication when therapy would do just as well (or better) because therapy is harder, more expensive, and not covered by insurance.
If anyone reading this has had a negative experience with a psychiatrist, I want to apologize. Imperfect people sometimes make imperfect decisions. I don’t want the misdeeds of a few to overshadow the good intentions that most of us have.
Okay, so moving on.
Why should we have a classification system for mental illness, anyway?
Isn’t that just creating needless and stimitizing labels?
As one of the 1-star amazon reviews said:
“This is not simply just some benign classification system. Eugenicists once created classification systems and we all know where that lead to.”
First of all, I guess I’d disagree that we can reasonably compare the DSM-5 to one of the worst human rights atrocities ever committed, resulting in the murder of over 11 million people… but I digress.
Remember, the utility of the DSM depends on the skill and knowledge of the person using it. It’s not designed to be used by court systems and insurance companies to justify taking children away from their home or to choose who deserves medical care (although it will be, but is that really the DSM’s fault?).
Classification is helpful in clinical care, because it helps the provider identify what’s going on, and therefore guides them toward the proper treatment. Is the person psychotic? Depressed? Experiencing a normal response to life stress? Should I recommend antipsychotics? Cognitive behavioral therapy? Lifestyle modification?
Classification is necessary in research. Almost everything we know about anything in medicine is from doing scientific research. Decisions about whether or not to recommend an aspirin a day, or to do surgery versus radiation therapy for breast cancer, or to keep LDL cholesterol under 160 in low risk individuals, are made based on scientific studies. And we can not do research unless we are all on the same page about what we’re talking about.
Is my schizophrenia the same thing as your schizophrenia? Is my autism your autism? Classification systems help drive research that is consistent and generalizable to the rest of the population. In fact, the DSM was originally created as a research tool, and only later used as a clinical one.
“But I heard that the DSM-5 isn’t scientific or valid”
People all over the web have jumped on recent comments by the director of the National Institute of Mental Health (NIMH), Thomas Insel, stating that the DSM-V isn’t valid. However, it’s important to understand what “valid” means in this context, and what unique challenges psychiatry faces when trying to define diagnoses. As Dr. Insel points out:
“Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever.”
In this context, valid means objectively definable. It means, for example, having a lab test for depression or a genetic test for schizophrenia, as one might be diagnosed with, say, high cholesterol or cystic fibrosis. But is this a reasonable expectation given the complexity of the body part we’re dealing with?
Part of the problem is that psychiatry deals with a very, very complicated organ (the brain). And unlike neurosurgeons or neurologists, we are not dealing with problems of it’s anatomy, but with problems of behavior and temperament and mood that are connected in an even more complicated way to the neurocircuitry of the brain.
Psychiatric disorders such as autism, schizophrenia, and bipolar disorder almost certainly have their root in problems of the brain, but the relationship is so complex, and our science not advanced enough, that we do not yet know exactly what all (or most) of the connections are.
We do not yet have lab tests for depression or genetic tests for schizophrenia, but does this alone mean that depression or schizophrenia are not true illnesses? There was a time when we didn’t know that cancer was caused by abnormally replicating cells or that infections were caused by tiny replicating bacteria. I assure you, though, that bacteria and cancer cells replicated all the same long before we ever had microscopes to see them.
So – understanding that there are limitations to our current scientific knowledge about psychiatric illnesses, and that much more research needs to be done – in the meantime what’s an average psychiatrist to do? There are people coming to our offices, suffering, distressed, and in pain, who need our help.
Should we say, “I’m sorry sir, but the science just isn’t there. Come back in 100 years.”
Maybe they would be heartened to hear I know a good web designer who thinks he can do better?
“But I heard that the DSM-5 calls normal thoughts and feelings a mental illness.”
So, there seems to be some misunderstanding about how psychiatrists practice. We do not go out trolling at bars and shopping malls and amusement parks looking for healthy people to mislabel as mentally ill. We have plenty of people coming to us. And typically, they come to us or their families bring them in because they are suffering and are in some way impaired.
Embedded in the vast majority of psychiatric diagnoses is the following criteria:
“The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.”
By definition, if you are not significantly impaired at home, at work, or in relationships, you do not have a disorder, even if you otherwise meet criteria. A diagnosis of mental illness requires functional impairment. So if a personal without functional impairment is told they have a mental illness, is this really the fault of the diagnostic manual, or is it the fault of the diagnoser?
“But I heard that the DSM-5 makes it sound like everyone has a mental illness”
From the early stages of work on the DSM-5, there has been concern that the criteria for many mental illnesses would loosen, leading to a dramatic increase in the number of people diagnosed.
(Actually, many patients and patient’s rights advocates worried the opposite – that criteria would tighten and it would be harder to get services without a formal diagnosis).
Even the New York Times wasn’t immune to publishing misinformation – this piece somehow slipped through the editor’s cracks:
“In what could prove to be one of their most far-reaching decisions, psychiatrists and other specialists who are rewriting the manual that serves as the nation’s arbiter of mental illness have agreed to revise the definition of addiction, which could result in millions more people being diagnosed as addicts and pose huge consequences for health insurers and taxpayers.”
First of all, the DSM doesn’t say anything about “addicts,” which is a layperson term and not a clinical one. The DSM-IV made a distinction between abuse and dependence, the latter referring to a more serious form of use where a person becomes tolerant to the substance (needs higher and higher amounts to get the same effect) and has withdrawal symptoms when they stop using.
But based on recent evidence that abuse and dependence weren’t so different after all, and were rather two points on a continuum of problematic behavior, the terms “abuse” and “dependence” were scrapped in favor of the term “substance use disorder,” of which a person can have a mild, moderate and severe form.
The moderate and severe forms roughly correlate to the past terms of abuse and dependence, such that the prevalence of these diagnoses in the DSM-5 field trials remained exactly the same. The term “mild” substance use disorder isn’t designed to label healthy people as addicts, but to help identify early stages of problematic substance use such that small interventions (like a brief conversation) can be helpful. Remember – functional impairment is required for any of these diagnoses. I’m no substance abuse expert, but sounds like a pretty reasonable change to me.
A few months prior, the Washington Post published an article with the understated title “Antidepressants to treat grief? Psychiatry panelists with ties to drug industry say yes.” It said:
“In what some prominent critics have called a bonanza for the drug companies, the American Psychiatric Association this month voted to drop the old warning against diagnosing depression in the bereaved, opening the way for more of them to be diagnosed with major depression — and thus, treated with antidepressants.”
The article went on to imply that psychiatrists involved in changing the definition of depression in the DSM-5 did so to make money from sales of all the antidepressants that would now be presumably prescribed for grieving individuals. If you are interested the response of the DSM-5 mood disorders work group to this article, you can read it here.
If the Washington Post reporter had actually read the treatment guidelines (which are separate from the DSM-5), he would see that they do not recommend medications for bereavement, and instead recommend therapy, and in the case of major depression give equal weight to medications and psychotherapy. When medications are used, it is recommended to start with generic versions, which are inexpensive and do not make pharmaceutical companies rich because the patents have expired.
Regarding changing the definition of major depressive disorder so that it can be diagnosed when a person is grieving, I, personally, don’t get what all the fuss is about. It seems reasonable that a person who is grieving can also be suffering from depression. To clarify: one can be grieving and also have major depression, but just because one is grieving doesn’t mean that they’re depressed. If a person is depressed, should we withhold treatment just because they’re bereaved?
Unfortunately, diagnoses of depression using DSM-5 criteria showed disappointingly low reliability in field trials (that is, different clinicians weren’t very consistent in how they diagnosed the same person), suggesting that we need to be better at distinguishing depression from other mood disorders, and also from normal sadness.
Yes, there is a long way to go.
We need more scientific evidence, and we also need a more holistic view of mental health that is less based on the medical model of sick/not sick and that acknowledges the whole spectrum of wellness that is possible and worth striving for. There is so much more I have to say on that topic, but it will have to wait for another post – this one is already too long, and I’m tired of writing.
In the meantime, though, while we wait for better science and better perspectives, there are people in pain who need our help.
As one NY Times letter put it, the DSM is just a tool, an instrument. And it’s the poor musician who blames his instrument.