The Book of Woe: The DSM and the Unmaking of Psychiatry

by Gary Greenberg

  In that October conversation, Regier also told me he didn’t understand what all the fuss was about. “I’m surprised10 that the . . . statement would be considered news. Perhaps we should have a daily tweet.” It was as if he didn’t know that it was his people who had called it a “news release” or that just the previous day, they had quoted him calling the field trials a “critical phase” in an “important process.”

  The field trials did eventually get under way. Or at least the academic center studies did, with the first opening for business just before Christmas 2010, and the last coming on line in March 2011—nearly a full year past their scheduled start. But even as we convened in Hawaii, the RCP trial had yet to start, and no one was saying when it would. Allen Frances had made the predictable hay of the slipping schedule, adding it to the litany of what he called disarray and disorganization, his tone—“Missed Deadlines Have Troubling Consequences,” in case that wasn’t obvious—becoming increasingly high-handed. In the meantime, it was safe to say that the field trials had not yet won over a single heart or mind.

  So no wonder Regier is eager to strut the APA’s stuff. I’m sure he’d like us to go back and talk them up to our colleagues, maybe even tweet the virtues of the new criteria and the dimensional measures. I am also eager, as I have signed up to be one of the RCP trialists, and this session will be my first chance to see what I’ve gotten myself into.

  “Of particular value to us is feedback from clinicians about how useful these [assessments] would be in your practices,” Regier is saying. And the feedback starts right now, he tells us, thanks to the electronic keypads, about the size of a television remote control, on the tables in front of us. “Let’s try these out with a question, and you’ll see how they work when an entire audience uses them.”

  The entire audience, which by now has swelled to at least thirty-five, grab their clickers. The question comes into view on the PowerPoint screen.

  Which of the following productions was not filmed in Hawaii?

  A.Hawaii Five-O

  B.Baywatch

  C.Jurassic Park

  D.Indiana Jones and the Raiders of the Lost Ark

  “There’s supposed to be music,” Regier says, and looks at the tech guy, who flips a switch. A steel drum song breaks out on the speakers. Which seems a little more “Hey, mon,” than “Aloha,” but Regier doesn’t seem to mind.

  We cast our ballots, and as soon as the calypso stops, percentages for each answer pop up on the screen. Baywatch leads the way. “Fifty percent of you know your TV series,” Regier says.

  Regier explains what is about to happen. Emily Kuhl, an APA staffer, and William Narrow, the psychiatrist in charge of research for DSM-5, will be reenacting a session that occurred some weeks ago. Kuhl will “channel” the patient, Regier explains, while Narrow conducts his “regular clinical interview.”

  Narrow begins by telling us that the patient’s name is Virginia Hamm. The lame joke falls flat in the empty room. Bearded and balding, Narrow is laconic, even shy, and not a natural showman; he looks like he’d rather be almost anywhere else than on this, or any, stage. Virginia, he continues, had come to the clinic and been assigned to a computer. She’d typed in her demographics and described her chief complaint as Obsessive-Compulsive Disorder and depression. She had filled out the Cross-Cutting Measures, Levels 1 and 2—the dimensional measures designed to assess symptoms that are not necessarily part of the diagnosis. She had indicated how regularly she felt “irritated, grouchy, or angry” or “nervous, anxious, frightened, worried, or on edge,” how often she heard voices or thought of hurting herself, whether she sniffed glue or drank alcohol, or if she had ever found herself “not knowing who you really are or what you want out of life.” She’d clicked through the items on the Altman Self-Rating Mania Scale and the Patient Health Questionnaire—Somatic Symptom Short Form, and the PROMIS (Patient Reported Outcomes Measurement Information System) scales for anxiety and depression. She had confided in the computer about her “getting along with people and participation in society,” about her “communicating/understanding,” her “getting around and self-care and life activities.” After about a half hour of pointing and clicking, she had pushed the last button, sending the information to another computer, this one at Vanderbilt University, home of the REDCap (Research Electronic Data Capture) system, which had tabulated the answers and generated a report, returning it at the speed of light to her clinician. We are holding a printout of the results in our hands, a thick sheaf of papers telling us what is wrong with Virginia Hamm, if not how to cure her.

  Narrow is going through the results out loud. “Two point nine on the depression measure, anxiety score is in the moderate range, somatic symptoms score is zero, suicidality is one,” he reads from the laptop sitting on the table between him and the fake Virginia. “No reported problems with cognition or memory. Emotionality above average, antagonism is above average, disinhibition is below average, schizotypy is below average.”

  Narrow seems a little tentative about what to do with this information. He tells us that it isn’t exactly diagnostic, because it doesn’t correspond to DSM categories, and it isn’t exactly a screening device; it is only supposed to help direct the clinician’s attention to certain DSM categories. But he is short on the details. It might be that his regular clinical interview, like mine and that of most of the therapists I know, doesn’t usually involve a laptop and a fake patient and an audience and a computer printout. Still, he seems more uncertain about what to do next than you’d expect from the guy who is in charge of the research.

  He seems particularly unsure about how long this is going to take. “If I start running out of time,” he says, “we’ll just need to cut this short, but I will try and do as much as I can of the high points of the interview.” He looks at a cluster of four or five women in the front row, APA apparatchiks apparently. They seem to know something, and if it had to do with the possibility that a ninety-minute session is not sufficient to demonstrate the clinical trial, I realize that I might have made a mistake—not by coming here instead of going to lunch, but by signing up to do four of these interviews and thus committing six or more nonbillable hours to the DSM-5 cause. I wonder what is going to happen when my 4,999 fellow trialists, most of whom, or so I imagine, are busier and charge more money than I, do this math.

  “Okay, Miss Hamm,” Narrow says. “I’m glad you’ve consented to do this study for us. It’s a very important study and will help us to develop a new DSM.” He asks what has brought her to the clinic, and she tells him what she has already told the computer about her OCD and depression. “Why don’t we start with the OCD?” he asks. She tells him about how she couldn’t throw anything away, especially not newspapers, how years and years of them have at times accumulated in her apartment.

  “Were most of the rooms filled with things?

  “Yeah.”

  “Filled filled?”

  She assures him that she left paths between the piles, but even so, one day her brothers showed up at her apartment and tossed her stash into a dumpster they had rented.

  He wants to know what that was like “emotionally.”

  “I was shocked,” she replies. “It’s stressful, you know, watching them take my stuff out. But we decided it’s better to throw away two good things than to leave ninety-eight things that aren’t so good.” And indeed, she added, while the brothers had to repeat the purge a number of times, she had gotten used to it.

  “So you had to go through some real thought to part with these things?” Narrow asks.

  Virginia doesn’t respond.

  Narrow tries more questions about her OCD, but Virginia, at least the way Kuhl is playing her, keeps her cards close to her vest. She is not terribly insightful, or interesting, or engaging.

  “So let’s talk about the depression now,” Narrow says.

  It started in college, Virginia tells him,
when she was “finding out that I’m gay” and worrying about what her parents would think, but it wasn’t terrible, and she was never suicidal, and she was on meds now, and, especially since two of her brothers had come out in the meantime, her depression was really not much of a problem.

  Narrow’s regular clinical interview doesn’t seem to include taking a swing at any of these hanging curveballs. Instead he delivers a volley of questions about whether she has ever been manic or terrified of germs, or had “worries that go around and around in your mind” (no, no, and no). He inquires into her smoking habits (a pack a day), her drug use (LSD once or twice a year, and marijuana if someone offers it to her), and her drinking (none).

  “So what kind of person do you think you are?” he asks. “Shy? Withdrawn?”

  “Well, I’m not outgoing,” Virginia says.

  Nearly a half hour has gone by since we met Virginia Hamm. Somewhere paint has dried and grass has grown, and I’m beginning to think that back at APA HQ, where Virginia is Emily and Dr. Narrow is Bill, there is some trouble between them. Because she is not helping him at all. Her monosyllabic answers are draining his monotone questions of whatever vitality they might have had. She might be illustrating a clinical point with her reticence, but Narrow’s interrogation isn’t exploring it. Nor is it clear what use he’s making of the Cross-Cutting Measures or the PROMIS or anything else from the heap of REDCap data, or just how these vaunted dimensional measures are supposed to work. Neither does he seem intent on establishing trust by turning the bits of information he is extracting into the first tendrils of intimacy or, for that matter, on achieving any other therapeutic goal. In fact, for the life of me, I can’t figure out what he is up to.

  But then again, I’m not a psychiatrist, let alone a psychiatrist at the top of my profession’s food chain, and it is the nature of the mental health professions that they are practiced in their own little silos, which means that even after nearly thirty years in the business, I might still not know how a regular clinical interview is supposed to go.

  My BlackBerry buzzes. It’s a message from Michael First, who has the row behind me all to himself, and who is a psychiatrist at the top of his profession. “I’m not sure what the point of this exercise is,” it says. I am reassured, if no less mystified.

  As if he has read our thoughts (or heard the BlackBerry and realized he’s losing his audience), Narrow suddenly stops the Q&A. “I think I’m going to go onto the computer now,” he says. “I’ll be quick.” He turns toward it and taps away. It’s not clear whether he’s reassuring us or the patient or the women in the front row.

  We are looking at a giant version of his monitor on an overhead screen. To the left is a list of clickable diagnostic classifications. He tells us he is going to open the module for Hoarding Disorder—“the most dramatic example that we have,” he says, although this was surely damnation with faint praise. (It also happens to be a diagnosis proposed for DSM-5; they’ve smuggled in an advertisement for one of their new products.) We’re looking at questions keyed to the proposed diagnostic criteria for Hoarding Disorder. Narrow clicks on the items that, based on the interview so far, he thinks Virginia meets. The computer asks him if he wants to enter a diagnosis of Hoarding Disorder. He clicks yes and then clicks another box. The page disappears before I can read it.

  There is a sudden commotion from the front row; the women are waving their hands and stage-whispering to Narrow. I’m thinking that maybe they’re going to remind him that he has left out something important, something that will allow us to see what innovation this rigmarole brings to diagnostics or, for that matter, how it does anything other than provide a near-perfect, if unintended, example of the circles in which psychiatric nosology runs, the way he got to the diagnosis through the symptoms and the symptoms through the diagnosis, how Hoarding Disorder is another line carved in sand, a diagnosis that will no doubt be the object of scorn for the leaders of DSM-6 or DSM-7, fodder for their paradigm-busting cannons, an opportunity for them to justify the new book by decrying the old one’s reifications. Perhaps, I think, they’re going to stand up and say, “But Bill, you didn’t even pretend to be in doubt for a moment about the outcome—which, after all, let’s face it, you knew all along, since you watched the videotape of the real Virginia—so you couldn’t demonstrate how to get to the diagnosis or what it has to do with emotionality or schizotypy or antagonism or with the PHQ and the ASRM or anything we’ve seen other than the story about the brothers and the dumpster and the piles of papers, which didn’t require a computer to figure out, which indeed may have come to you despite the computer,” and then add, sotto voce, how it might not be such a good idea to put all this unreadiness and ineffectiveness on such naked display, not even here in front of this crowd whose sparseness must seem to him, and to Kupfer and Regier, like a blessing.

  But it’s none of that. “You didn’t save it!” one of them exclaims. Narrow has missed a click and lost all the data he’s spent the last twenty minutes entering.

  Flop sweat breaks out on his brow. “I’m sorry,” he says. “This is only the second time I’ve done this.” He sounds more sheepish than petulant, like a batter returning to the dugout after whiffing in the clutch, explaining to his teammates that he’d faced this pitcher only twice before.

  “Should I cut this short?” Narrow asks the women. He’s also looking across the stage, where Kupfer has replaced Regier. It’s pretty clear Narrow has had enough; he’s begging for the hook. But none is offered, so he takes matters into his own hands announcing that he will skip over the modules for other diagnoses and will now turn to the severity measures.

  These turn out to be quite simple and, unlike the other ratings, clear in their application, if not terribly revealing. He goes through the criteria proposed for Hoarding Disorder and asks Virginia to rate their intensity and the distress they cause her on a scale of one to five. Then, “because we don’t want total dependence on all these forms,” he gives his own rating, as we field trial clinicians will be expected to do. “I don’t have a lot of experience with this disorder”—and how could he, since it doesn’t yet exist, at least not officially?—“but I would say it’s moderate. It could be a lot worse. I mean, there’s no dead animals in there.”

  Narrow looks back at the front row. “Anything else?”

  “Save it,” someone replies.

  He’s clicking through that procedure when Kupfer takes the lectern. There’s little mercy in his move. He doesn’t even thank Narrow (or Kuhl) for his efforts. Instead, he tells us to pick up our clickers. “Given the fact that we’ve spent a reasonable amount of time on the interview,” he begins (and I don’t hear any irony in his voice), we ought to be able to come up with a diagnosis. A list of choices flashes on the board. The steel drums play. The percentages are revealed. Sixty-seven percent of us have voted for Hoarding Disorder.

  It is a regular landslide, unless you are in, say, Turkmenistan. Which, evidently, Kupfer wishes we were. He wants to know why a full third of the room—about a dozen of us—have not voted for the party-endorsed candidate. (I’m wondering the same thing. Assuming the five APA functionaries—15 percent of the electorate—voted the right way, only half of the rest of us voted for Hoarding Disorder, and I had cast votes for Hoarding Disorder on the four clickers I could easily reach.) He thinks the next question might help to provide an answer. How useful were the new criteria in reaching our conclusion? When 65 percent of us answer either moderately or extremely, he observes that this is pretty much the same percentage of the crowd who voted for Hoarding Disorder, as if this somehow strengthened the credibility of the criteria, as if it did more than indicate how circular diagnostic logic is. Of course they were useful in making the diagnosis; there was no other way to reach it and, pace that dissenting 33 or 35 percent, no other diagnosis to reach. (I’m feeling a little guilty about that two-point discrepancy; I cast a vote for moderately on one less clicker than in t
he first poll.)

  When 31 percent of voters say they think Virginia had Mixed Anxiety-Depression—a proposed diagnosis that has so little to do with Virginia that I figure it was thrown in just to fill out the multiple choices—I begin to wonder if someone is intentionally committing mayhem. Ten people who want to embarrass Kupfer? A terrorist cell sent in by the proponents of MAD to blow up HD? Acting out by the terminally bored?

  Kupfer must be wondering, too, because he invites people to come forward and explain their votes. No one does. He moves on. He asks how useful we found the Cross-Cutting Measures and whether the forms were too long (50 percent) or too short (4 percent; he’s lost even the front row). When 53 percent say that the DSM-IV criteria are superior (a meaningless question because the DSM-IV doesn’t list Hoarding Disorder), Kupfer is quick to call the result a “nice split.” When 30 percent say the new approach is superior to DSM-IV’s, and 20 percent say it’s equivalent, he points out that this means half of us thought it was the same or better. But this turd cannot be easily polished, and when Narrow ends the presentation by saying, “Of those who said this is worse or much worse, we’d like to hear why,” it is hard to imagine that he means it or that either man ever wants to hear about field trials again.

  • • •

  When the session is turned over to the audience for questions, Michael First stands up. He waits in line at the audience mic while a man takes Narrow to task for not asking more about Virginia’s substance abuse. “I hope you weren’t rating my interview, as opposed to the general approach,” Narrow responds.

  First doesn’t attack Narrow for being unprepared or criticize his technique or ask him just exactly what the point of that exercise was. Instead, he says that as he watched the demonstration, he was wondering how he would have asked the questions and how every other clinician would have asked them; and, realizing that there are as many regular clinical interviews as there are clinicians, he was also wondering how Narrow, in his role as the head of research for DSM-5, was going to deal with that. How will he know, in the likely event of diagnostic discrepancies among clinicians, that they are the result of the criteria rather than the way each clinician asks the questions? How, in other words, will the field trials do the job they are supposed to do—evaluate the reliability of the new DSM?