Psychiatry’s Best Guess

The new DSM is flawed and often unreliable. It’s also indispensable.

best-guess

I was a third-grader when I first entered a psychiatrist’s office. The prelude to my visit was a skipping lesson I gave my brother, who was in first-grade at the time, one morning before school. Not skipping as in using a skipping rope, but the locomotive kind in which you lift your knee and hop forward. I wanted to share with him my recent discovery of the joy and giddiness that comes from literally bounding through space. Perhaps I should have realized that skipping is an outdoor activity. In my defence, however, the lesson occurred on the second floor, which consisted of our bedrooms on either side of the landing. Thus, our skipping trajectory, spanning the north-south axis of our home, seemed amply long.  Time was pressing, but after a few tries, he was doing it, he was skipping along the axis in the grip of joy and giddiness, and it was beautiful. But in all my coaching, I had failed to teach him how to stop, so he didn’t. He kept on skipping until his hand went right through two panes of glass.

Such an event should be a hilarious family story, and it is, shared between my brother and me. But my mother was convinced then, as she remains today, that I pushed my brother through the window. Her conviction landed me a session with her psychiatrist, marking my introduction as a life-long mental health consumer.

My session occurred around 1978, during the final years of the DSM-II era, as psychiatry was shedding the last of its dark history and pseudo-science skin. No two books have done more to rescue psychiatry and establish its legitimacy as a medical speciality than the International Classification of Diseases and Related Health Problems (ICD), published by the World Health Organization (WHO), and the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA). The ICD, which first included its chapter (Chapter V) on mental disorders in 1949, is the official diagnostic and billing system for mental health care services in both Canada and the United States. However, many clinicians practising in North America are unaware of this fact, such is the pervasiveness of the DSM in all arenas of mental health, including clinical practice, research, treatment development, and law. Its influence has earned it the explanatory moniker, “the bible of psychiatry.”

The DSM-5 will “take psychiatry off a cliff,” according to an editor of a previous edition

At no time has the DSM’s singularity been clearer than today. In 2013, new editions of both books are being published: the DSM-5 in May and the ICD-11 in October. Yet, only the pending publication of the DSM has inspired controversy. Throughout the revision process, which began in 1999, accusations of maleficence have been as steady as a drumbeat. Early disputes concerned the transparency of the process and of the system of disclosing financial relationships with pharmaceutical companies. As drafts of the proposed revisions became available, the invective has focused more on the content than the process, but what has remained constant (and shocking) is the public nature of the accusations. Even the editors of previous editions, Robert Spitzer (DSM-III) and Allen Frances (DSM-IV), have made their concerns public. Frances has said he fears the DSM-5 will “take psychiatry off a cliff.” When psychiatrists themselves align their voices with psychiatry deniers who characterize the field as fraudulent, it gives one considerable pause for thought.

It’s nearly impossible to keep psychiatry and the DSM separate in one’s mind. As such, personal beliefs about the sanctity (Frances) or profanity (a denier) of psychiatry often bleed into discussions about the DSM. Because personal beliefs are involved, the stakes are high and emotions higher. The APA only adds to the conflation between psychiatry and the DSM. Describing itself as “the voice and conscience of modern psychiatry” the APA assumes a God-like role that
defies reason. Is it any wonder that in the minds of both supporters and detractors, the DSM’s success or failure extends
beyond the APA to all of psychiatry?

In truth, the DSM’s primary use is the standardization of psychiatric practice and research. The disorders that it contains and categorizes become, simply because of their being in the DSM, officially recognized. Each disorder has a set of diagnostic criteria, a description, and a billing code consistent with the ICD. But therein lies the potential for controversy: the DSM categorizes human behaviours. It declares what is normal (shyness, for example) and what is not (social anxiety). More, it attempts to define the point when a normal behaviour (like, say, losing one’s temper) becomes a symptom of a disorder (an antisocial personality disorder). And because the DSM holds such a singular position, its contents not only shape the day-to-day practice of psychiatry but also influence the efforts of the pharmaceutical companies looking to develop the next Prozac. For good or bad, the DSM has become the sum and substance of our mental health system.

I fear that if psychiatry does not survive, I will lose my understanding of the world and how I fit within it

Because of its centrality in the mental health field, I too conflate the DSM with psychiatry. The desire to protect psychiatry from its deniers is what first drove me to wade into the controversy.  Allen Frances may fear the DSM-5 will so damage public opinion that psychiatry itself may not survive, but I fear that if psychiatry does not survive, I (and many others like me) will lose my understanding of the world and how I fit within it. I am someone who is mentally disordered and I cannot change that, but I can replace fear with thought. I read op-eds, blog posts, and magazine, newspaper, and scholarly articles criticizing the DSM-5, and I read the APA rebuttals. I went through gigabytes of data that record the stages of development, the workgroups, the proposals and rationale for each revision posted on the DSM-5’s exhaustive website. I’ve spent hours flipping through the thousand-plus pages of the current tome, the DSM-IV-TR. Contrary arguments have persuaded and dissuaded me. Never before have I changed my mind, going back and forth, so often on the various issues the DSM brings to public attention. Those issues range from the profoundly philosophical—whether psychiatry is a valid field of medicine and its corollary issue of whether mental disorders exist—to the individual and ethical—whether psychiatry is medicalizing ordinary human behaviour (for example, one op-ed author quipped that the diagnostic criteria for oppositional defiant disorder— losing one’s temper frequently, being disdainful of authority, or acting touchy and irritable—equally defines teenager) and its corollary issue of whether psychiatry is in bed with Big Pharma, the pharmaceutical companies that research and develop drug therapies. Only the second set of issues, which are valid concerns, directly connect to the DSM.

When considering whether the DSM is medicalizing ordinary human behaviour, critics point to two changes the APA initially proposed. The first concerns the diagnosis of an episode of major depression. In the previous edition, the DSM-IV, the so-called two-month bereavement clause existed to distinguish between grief (a normal human behaviour) and a depressive episode (a mental disorder). In a 2011 proposal, the APA removed the clause, not because it decided, suddenly, that grief wasn’t normal, but because the distinction between grief and depression is so obvious, it needn’t be stated. Not only was it not necessary, the clause itself was problematic: why single out bereavement when so many events in a person’s life—such as divorce or job loss—can cause normal, everyday feelings of grief and loss? The clause also presumes that someone cannot be bereaved and suffer a major depressive episode simultaneously.

Critics pounced on the removal of the bereavement clause. Removing it was tantamount, they said, to equating the grieving process with a major depressive episode. Clinicians would now diagnose the bereaved as depressed and treat them with antidepressant. Thus, went the criticism, the DSM was creating a new clientele for Big Pharma to target with its psychotropic medications. The cynicism in this characterization is staggering. It presumes that clinicians have so little understanding of a major depressive episode that they might misdiagnose grief as depression.

The issue that actually demands our attention isn’t the bereavement clause. It’s that major depression is already being misdiagnosed. Studies indicate that in 2010 one in five Americans was taking some form of psychotropic medication and that antidepressants are the most prescribed medication in the States. The question is why: why are doctors not able to determine whether someone is experiencing normal or clinical sadness? This question is vital because antidepressants don’t work on those who are experiencing normal sadness, and they also come with side-effects that can harm patients. Prior to prescribing antidepressants, a doctor should have an informed belief that the medication will have some benefit. So why are antidepressants the most prescribed medication in the States? Before we accuse the DSM of medicalizing the human condition, we need to know whether the diagnostic criteria of major depression are leading doctors to misdiagnose the disorder. Other factors, such as the direct marketing of antidepressants to consumers, need examining.

Canada did not publish its national mental-health strategy until 2012. How healthy can a system be when it has been neither qualitatively nor quantitatively analyzed?

What about our mental health-care system? Does it contribute to misdiagnoses? Consider that only in 2012 did Canada publish its first national mental-health strategy. And, although it’s estimated that Canada’s forty-one hundred registered psychiatrists do not come close to meeting the country’s needs for psychiatric care, not until 2007 did Canadian mental health agencies begin to collect data to assess and ameliorate this shortage. How healthy can our mental health system be when it has been neither qualitatively nor quantitatively analyzed? Perhaps another factor is our misguided belief that medicine somehow has the ability to transcend human limitations of incomplete knowledge, varied levels of abilities, and the gamut of human behaviour. For too many years, we’ve watched Dr. House, whose medical specialty as a diagnostician is a television conceit, and marvelled at his ability to correctly diagnose all of his patients (albeit always in the third act).

Though it emerged from a dark history of abuse in the not-very-distant past, psychiatry is a specialized area of medicine, like gynaecology, oncology, or cardiology. (If placed on a spectrum, psychiatry would sit somewhere between neurology and psychology.) A psychiatrist, then, is a doctor with the same foundation of knowledge all doctors have, plus a specialized knowledge in the assessment and treatment of mental disorders, such as psychopharmacology and psychotherapy. Most people understand this. What’s less known, however, is that any doctor, whether or not he or she has specialized knowledge in assessing or treating a mental disorder, can diagnose a mental disorder and prescribe psychotropic medications to treat it. As there is a significant global deficit of psychiatrists in developed countries and even more so in developing countries, the general practitioner—the family doctor or the doctor at a medical clinic—is often the one to whom the assessment and treatment of a mental disorder falls. Even with full knowledge and ability, a clinician needs time to make an accurate diagnosis, time to build a relationship with a patient, time to draw out the patient’s history, and time to observe the patient. Sometimes, he or she needs to spend time with the family to gather the observations of those close to the patient. The burden of too few general practitioners, whose clinical hours are usually segmented into fifteen-minute appointments, coupled with even fewer psychiatrists, makes that kind of time a luxury few can afford.

Consider the session I had as a third-grader with my mother’s psychiatrist. What I remember is a sense of unease that turned to relief when the psychiatrist asked me to draw a picture of my family. He never asked me about the skipping incident, but the resulting drawing he shared with my mother confirmed his diagnosis of severe jealousy. (Forgive me for being cheeky. Neither jealousy nor sibling rivalry is pathological; it appears nowhere in the DSM or the ICD, even if you do push your little brother through a window, which I did not.) He noted the paper was slightly torn where I had drawn my brother’s glasses, represented by dark pencilled circles. The darkness of the lines and the paper tears were obvious signs that I was deeply jealous of the glasses my brother had recently begun wearing. He prescribed a pillow, something other than my brother I could punch to relieve aggression. My mother and I left the session, went to the nearest department store, and purchased a puke-green velour pillow that I put away as soon as we got home.

This story is not meant to stand as a cautionary tale on the dangers of misdiagnosis, which can obviously be devastating to the patient. Neither my mother nor I suffered harm through this gross misdiagnosis. But neither were we helped. Instead, the story demonstrates that assessing the causes of an individual’s behaviour takes time, a certain mindset, and a willingness to foster a connection. The psychiatrist simply assumed I had pushed my brother through a window. Based on that assumption, his interpretation of the drawing was conceivably valid. But had he assessed me as a patient and not the daughter of a patient, I like to think he’d have interpreted the drawing as the work of an overanxious child who wished to please him and who, given a task, was compelled to do it right. Drawing glasses is difficult, at least for an artist with as little talent as me. I can imagine the endless erasing and re-drawing I would have done to do my brother justice and the welling self-hatred when I realized I had once again torn the paper. He wasn’t able to recognize my anxiety because I wasn’t his patient. A proper diagnosis requires knowledge, experience, and investment. It’s not easy work, to be sure, but he didn’t take the time, make the time, or even think the time was warranted.

The APA has listened to both the work group that put forth the proposed change on the bereavement issue and the critics of the proposed change. The DSM-5, on the date I am writing this, plans to include information differentiating the sense of loss arising from normal human experience from the sense of loss arising from major depression. It will likely end up as a footnote, not a clause.

There are other proposed changes critics cite as proof that the DSM is medicalizing ordinary suffering and lining the pockets of Big Pharma. One is the inclusion of a new adolescent diagnosis, psychosis risk disorder (which describes adolescents who are experiencing psychotic symptoms, such as hearing voices, hallucinating, or experiencing delusions, but who are still in touch with reality, i.e. not experiencing full-blown psychosis). One of the most vocal critics is Allen Frances, the very man who birthed the previous edition, the DSM-IV, in 1994. Frances has reason to be cautious, even sceptical, when it comes to including new adolescent disorders: Under his reign, the DSM included a new diagnostic category for bipolar disorder in children. Over the next decade, the number of children diagnosed with a bipolar disorder—many of whom had experienced neither a manic episode (a necessary criterion), nor reached the age when a proper diagnosis can be made—increased forty-fold. As treatment follows diagnosis, many misdiagnosed children were prescribed risperedone, whose effects on developing adolescent brains are little understood, but whose side-effects (significant weight gain, increased risks of obesity and diabetes) are well known. This was bad enough, but it got worse. In 2008, a United States Senate investigation, headed by Senator Charles E. Grassley, uncovered that psychiatrist Joseph Biederman, who had advocated for the inclusion of bipolar disorder in children in the DSM-IV, had failed to report the 1.6 million dollars in funding he’d received between 2000 and 2007 from Johnson & Johnson, the company that owns Risperdal (the brand name of risperedone).

Focusing on whether a disorder should or should not be included in the DSM is to lose sight of the larger purpose of psychiatry: the patient. To prevent misdiagnoses by excluding disorders from the DSM seems a poor strategy

Biederman’s financial relationship with Johnson & Johnson did, it’s true, occur after the release of the DSM-IV and its inclusion of bipolar disorder in children. Critics who therefore point to this relationship as the smoking gun—proof that the DSM exists to profit pharmaceutical companies, and in turn, psychiatrists— are misguided in attempting to draw a universal truth from a particular event. In using fallacious logic, critics miss the disturbing aspect of the story. By not disclosing the funds he received, Dr. Biederman broke the rules of the university (Harvard) employing him, and the NIH. But more alarming was the promise, recorded on a PowerPoint slide, he made to Johnson & Johnson: His clinical trials would prove the efficacy of Risperdal in childhood bipolar disorder. What researcher knows the results of trial before the trial is conducted? Biederman’s conduct was distressing and unethical, but his actions are not unique in medical research. Indeed, the corruption of pharmaceutical research is an issue that all of medicine, not just psychiatry, needs to address.

Biederman’s misconduct harmed the reputation of the DSM-IV and, by extension, that of Allen Frances. When Frances learned about the inclusion of a new adolescent disorder, he understandably feared a repeat of the children with bipolar disorder epidemic. Perhaps so too did the APA, as it has since announced it will move psychosis risk disorder from the main diagnostic section to Section III, which is comprised of conditions that need more research before they can be considered formal disorders .

But can we hold the DSM responsible for such trends when they occur? Frances felt responsible in setting off the children’s bipolar epidemic, clearly, and the fact that he feels so can be seen as noble. But accuracy, not nobility, is critical to prevent similar incidences. Surely, the responsibility to assess the causes of the bipolar fad and examine the system in which those misdiagnoses were made is the APA’s. To place responsibility on the DSM is to ignore the fact that many doctors assigned the label of bipolar disorder to children who, according to the DSM’s criteria, should not have been diagnosed.

This is not meant to suggest that every disorder in the DSM should stand as is. Our understanding is incomplete and, as we fill in the gaps, the disorders within the DSM will change in accordance with new knowledge. However, as much attention should be paid to how the DSM is used in clinical practice as to what disorders the DSM contains. Focusing on whether a disorder should or should not be included is to lose sight of the larger purpose of psychiatry: the patient. To prevent misdiagnoses by excluding disorders from the DSM seems a poor strategy. Here Frances and I differ: I don’t think the APA should remove diagnoses that describe actual disorders people suffer from simply because something in our health system is broken, be it too few psychiatrists and psychologists or our fantastical belief in medicine to cure all that ails us. Can we not accept that differentiating between what is normal and what is pathological is difficult and requires from physicians an investment of time and energy that our current system doesn’t allow? Should we refuse to help the child who suffers from psychotic symptoms or a bipolar disorder because we don’t want to recognize the flaws in medicine?

Medicine, not just psychiatry, is imperfect and, in some areas, downright crude. We’re good at fixing or preventing some malfunctions of the human body, such as broken bones we can mend, diseases we can vaccinate against, or malfunctioning hearts we can perform by-pass surgery on. And yet we also know, for instance, that people who receive bypass surgeries commonly experience a cognitive decline, the cause of which is still a matter of speculation. Medicine is frequently an exercise in probabilities. My father, a radiation oncologist, used to tell me that although he knew radiation therapy would help seven out of ten patients, he could not predict which seven the treatment would help and which three it would harm. Seven out of ten are odds I’d take, but what we tend to demand from medicine are not probabilities. We do not want an educated guess, we want certainty.

The gap between probability and certainty is not closed in the least when we continue to refer to the DSM as the “bible” of psychiatry, the kneejerk descriptor the media favours. Yes, we use the term metaphorically to explain its function and emphasize its importance, but the biblical connotations linger. They suggest that the DSM’s contents are dogma, a series of unchanging truths based not on evidence, but on belief in a theoretical perspective. Taken on faith, in short. This characterization of the DSM is unhelpful. That we are discussing the fifth overhaul of the DSM since its inception in 1952 is proof that change, such as the removal of homosexuality from the DSM-II in 1973, is possible. (That the current revision took nineteen years to achieve is problematic, given the rate of advances in research.)

Whether I suffer from one disorder or two doesn’t matter to me, but that my disorders are officially recognized does

As for putting forth a theoretical perspective, the 1980 publication of the DSM-III went some distance towards reducing dogmatic content. It embraced a non-theoretical, descriptive, categorical view of mental disorders, one that did not examine causes or propose treatments. The shift allowed for the development of a standardized, descriptive language that researchers and clinicians used to communicate to one another, an achievement that has made research and some clinical aspects more efficient and therefore more effective. But over thirty years have passed since the DSM-III’s release, and psychiatry still has a number of competing theoretical perspectives. Clinical, neurological, and genetic research has yet to yield the golden chalice: a valid overarching framework, a coherent set of principles that can explain the nature and cause of mental disorders. Despite the wealth of neurological research we’re accumulating, we are nowhere near confirming a diagnosis of a psychiatric disorder with a biological marker, such as having blood tested for the presence of a major depression. That psychiatry still sits in a place between evidence and conjecture is both its sore spot and weakness. Considering the controversy surrounding the DSM, it seems clear we have difficulty accepting psychiatry’s (for now) inherent uncertainty.

I live in that uncertainty. According to DSM-5, I suffer from two unrelated disorders: major depressive disorder and general anxiety disorder. Depressive and anxiety disorders are, for the moment, separated in the DSM’s classification system, but I believe as research continues we’ll discover mental disorders don’t fit neatly into the current system. But for now, the mixed depressive/anxiety disorder, first proposed in the DSM-IV, is to remain in Section III, the more-research-needed section. Whether I suffer from one disorder or two doesn’t matter to me, but that my disorders are officially recognized does. With a couple of labels, I can defend against the tacit accusation that I am someone who has abdicated her personal responsibility to cope and to let pharmaceuticals do that work for her. I see this accusation in the eyes of all who love me and it hurts. But the truth is that no pharmaceutical does the work it takes to cope. There is no pill for the human condition.

As flawed as it is, the DSM matters. I have to cope not only with disordered moods and thinking, but also with public perception. I want people who have never experienced a mental disorder to know that the suffering caused by a mental disorder is very different from the suffering caused by the ordinary losses we experience. I want people to know that I do not take antidepressants to avoid the slings and arrows of life but to deal with them. I want people to know that when I take an antidepressant and it begins to work, I feel like I have found myself again, that my core personality, quirky and flawed, resurfaces. The drugs I take alleviate my craziness—defined by emotions and moods unmoored from reality—and the psychotherapy I engage in unknots the flawed coping mechanisms developed during the years I believed my illness to be my fault. I want people to know that I’m not weakened by my disorders; I am strengthened. I am alive today because a mental health system exists, lucky to have found a psychiatrist as interested in psychotherapy as psychopharmacology. I believe myself to be one of a few receiving proper care in a society with little empathy for the mentally disordered.

Before we resort to burning the DSM and throwing psychiatry off Allen Frances’s proverbial cliff, we should perhaps put out the match and step away from the edge. Perhaps the cause of the controversy surrounding the DSM is simply an ordinary human reaction to uncertainty. None of the DSM is certain; it’s based on probabilities supported by the collection and analysis of statistics, as is much of medicine. Making a best guess is what moves science forward, and so let’s not forget that the DSM is guesswork; informed guesswork, but guesswork nevertheless. We don’t know much about the
human brain; in some ways, we are the last frontier of science. If the biopyschosocial model survives, the intricate interplay between the three may take generations to understand. Perhaps the time between now and then might be spent considering the real-world problems the DSM has exposed, such as the gap between care needed and care provided, the existence of too few psychiatrists and psychologists, and the implications of the pharmaceutical industry’s involvement in psychiatric and medical research.

Despite his failure with me, my mother’s psychiatrist did end up having a profoundly positive effect on our family. He saved my mother’s life, not by diagnosing her with a mental disorder but by recognizing she didn’t have one. My mother was experiencing unbearable back pain.  Some mornings, even the displacement of air caused by my entering her bedroom made her scream in agony. I would arrive home from school every day to find her crawling to get from one room to another. Because no medical specialist had been able to figure out what was wrong, the consensus was that it had to be in her mind. She was referred to the psychiatrist who took the time to talk to my mother. He got to know her. He then stood up to the specialists and demanded something be done. Many tests later, they discovered that calcifications had formed inside a vertebra and were pressing on her spinal column. One surgery later, I had my mother back.

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