Shrinks

by Jeffrey A. Lieberman

  In truth, the APA really was caught flat-footed by the mounting online criticism. Not only were they ill-equipped to use the Internet to respond in an organized or effective fashion, they were completely taken by surprise by the level of public interest. After all, during the development of the DSM-IV there had been precious little controversy among medical professionals, while public discussion had been virtually nonexistent. But now there were hundreds of voices calling for the DSM leaders to pull back the curtain and explain exactly how the next generation of psychiatric diagnoses were being created.

  Despite the outcry, it was possible for the Task Force chairs and APA leadership to dismiss the complaints as the usual carping and hyperbole coming from rabid antipsychiatry critics and special interest groups. After all, many of the objections leveled against the DSM-5 process weren’t all that different from the griping during the construction of the DSM-III and (to a lesser extent) the DSM-IV; they were simply amplified by the digital megaphone of the Internet. With so many individuals and entities holding a stake in the Bible of Psychiatry, any revision was sure to ruffle feathers and provoke kvetching. The APA hoped that they might be able to weather the online storm without getting wet… until a most unexpected pair of critics spoke out with the force of a hurricane.

  These psychiatrists stunned the DSM-5 leadership with a series of excoriating online missives that would eventually force the APA to alter the course of the book’s development. The first psychiatrist was the chair of the DSM-IV, Allen Frances. The second was the legendary architect of the modern Kraepelinian DSM, Robert Spitzer himself.

  Critics Emeritus

  In April of 2007, one year after work on the DSM-5 officially began and six years before it was scheduled for publication, Robert Spitzer sent a two-line message to DSM-5 vice chair Darrel Regier. Would it be possible for Regier to forward to him a copy of the minutes of the Task Force’s initial meetings?

  After completing the DSM-III, Spitzer’s role in the DSM process had become diminished. He had lobbied hard to lead the DSM-IV but was passed over in favor of Allen Frances, then a professor of psychiatry at Cornell Medical College. Nevertheless, Frances had treated Spitzer respectfully, appointing him to the DSM-IV Task Force as a “special advisor” and including him in all meetings. But as the DSM-5 was gearing up, Spitzer was excluded from any involvement (as was Allen Frances). Just as Spitzer had done thirty years ago, it appeared that Kupfer and Regier wanted to make a clean break with the past and create something new. In order to achieve their ambitious goal, they felt they needed to keep any previous DSM leadership at arm’s length.

  Regier responded to Spitzer by saying that minutes would be made available to the public after the conflict of interest process had been finalized and the Task Force fully approved. Spitzer wrote to Regier again a few months later but received no response. In February of 2008, almost a year after his initial request, Spitzer finally got a definitive answer to his inquiry: Due to “unprecedented” circumstances, including the need for “confidentiality in the development process,” Regier and Kupfer had decided that the minutes would only be made available to the board of trustees and the members of the Task Force itself.

  This wasn’t merely a personal snub directed at the architect of the modern DSM but a severe departure from Spitzer’s policy of transparency and engagement, a policy he had maintained even when confronted with pitched resistance to the DSM-III. Allen Frances had continued Spitzer’s policy of openness during the development of the DSM-IV. Concerned that Regier and Kupfer’s decision to close off all proceedings from public view would endanger both the legitimacy and quality of the DSM-5, Spitzer did something that no one expected: He took his concerns to the Web.

  “The June 6th issue of Psychiatric News brought the good news that the DSM-5 process will be complex but transparent,” Spitzer wrote in an open letter to the editor of APA’s online news service. “I found out how transparent and open when Regier informed me that he would not send me the minutes of the DSM-5 Task Force meetings because it was important to ‘maintain DSM-5 confidentiality.’ ” Galvanized into action, Spitzer began an unrelenting online campaign against the “secrecy” of the DSM-5 process and urging full transparency. “Anything less,” he wrote in 2008, “is an invitation to critics of psychiatric diagnosis to raise questions about the scientific credibility of the DSM-5.” He also criticized the use of the “confidentiality agreements” that all Task Force and work group members had been required to sign, prohibiting them from discussing the DSM-5 outside of the Task Force and work groups.

  Apparently Kupfer and Regier believed they could more effectively control the creation of a new DSM by shielding its Task Force and work groups from public scrutiny while they labored at the complex and potentially contentious job of improving psychiatric diagnoses. Spitzer himself had maintained an iron grip on the development of the DSM-III, but he had balanced his obsessive governance with an open and responsive operation, sending out a continuous stream of updates and reports. Even when he faced overt hostility in the latter stages of the DSM-III ’s development, he famously responded to every letter, article, and phone call that inquired about the DSM-III, no matter how critical.

  Spitzer wasn’t the only one vexed by the secrecy of the DSM-5 process. Allen Frances shared his former mentor’s skepticism. Frances had trained at Columbia under Spitzer and was one of the youngest members of the DSM-III Task Force before becoming chair of the DSM-IV; the general opinion among mental health professionals was that Frances had done a respectable job as steward of psychiatry’s most important book. Frances reached out to Spitzer, and in 2009, the two psychiatric luminaries posted a joint letter to the APA Board of Trustees warning that the DSM-5 was headed for “disastrous unintended consequences” because of a “rigid fortress mentality” by which its leadership “sealed itself off from advice and criticism.” They urged the APA to scrap all confidentiality agreements, increase transparency, and appoint an oversight committee to monitor the DSM-5 process.

  A firestorm erupted. At issue was the question of how to define mental illnesses in the digital age. Not only did far more empirical data and clinical knowledge exist than ever before, but there were myriad powerful stakeholders—including commercial, governmental, medical, and educational institutions, as well as patient advocacy groups—who would be significantly affected by any changes in the DSM. Would the public’s interests be served by allowing experts to work on revisions behind a protective veil? Or was it better to allow the debates over diagnoses (which would inevitably be heated and contentious) to play out before the public eye—which now consisted of a whole wired world of bloggers, tweeters, and Facebook users?

  Both defenders and detractors of the APA weighed in. The Psychiatric Times, an online magazine independent from the APA, published retorts on a regular basis. Daniel Carlat, a psychiatrist affiliated with Tufts University School of Medicine, described the ensuing conflict on his blog: “What began as a group of top scientists reviewing the research literature has degenerated into a dispute that puts the Hatfield-McCoy feud to shame.” The media, animated by the spectacle of the most prominent practitioners in the field warring with one another with the same rancor as the Republicans and Democrats in Congress, added fuel to the fire. Cable news shows invited talking heads to debate the merits of the DSM, and psychiatry in general. Prominent commentators from David Brooks to Bill O’Reilly weighed in. “The problem is that the behavioral sciences like psychiatry are not really sciences; they are semi-sciences,” wrote Brooks in an op-ed piece in the New York Times.

  From 2008 until the launch of the DSM-5 in 2013, almost three thousand articles about the DSM-5 appeared in newspapers and major online news outlets. It got to the point where minor milestones in the development of the DSM-5 drove the news, while any news event related to mental illness was immediately referred back to the controversial status of the Manual. In 2011, for instance, there was an explosion in news coverage of the DSM-5 when Congresswo
man Gabrielle Giffords was shot at an Arizona shopping mall by a psychotic young man. Another DSM-5 media frenzy followed the horrific 2012 school shooting in Newtown, Connecticut, once reports suggested that the perpetrator, Adam Lanza, had some form of autism. Much of the coverage suggested that psychiatry was not doing a good job of figuring out how to diagnose or treat mental illness.

  The APA hadn’t experienced this kind of public pressure since the early 1970s, when the Rosenhan study, the homosexuality controversy, and the antipsychiatry movement compelled the APA to move away from psychoanalysis and endorse a radically new paradigm for psychiatric diagnosis. But what would the APA do this time?

  The APA Responds

  Throughout the development process, Kupfer and Regier had repeatedly assured the APA Board in their regular reports that—despite all the internal grumbling and external noise—everything was going well with the DSM-5. But when Spitzer and Frances joined the online fray and the rumors about poor leadership drifting out of the Task Force and work groups failed to abate, the board began to wonder if there might be a fire behind all that smoke. Were there serious problems with the DSM-5 development process that Kupfer and Regier were not admitting—or even worse, problems they were not aware of?

  To find out, the APA Board of Trustees appointed an oversight committee in 2009. The new committee would examine the DSM-5 process and inform the board whether there were in fact problems requiring the board’s intervention. Carolyn Robinowitz, former dean of the Georgetown University School of Medicine and a previous APA president, was appointed chair of the committee. I was also appointed to the committee.

  We attended the DSM Task Force meetings, where we were updated by the DSM-5 chair and vice chair, and then met separately with task force members without Kupfer or Regier present. It quickly became apparent that the situation was as bad as the rumors had suggested. The DSM-III team had been unified in their vision of a new Manual and had complete confidence in Robert Spitzer’s leadership. With the DSM-5, many team members were openly critical of both the process and its leaders.

  Regier and his staff seemed disorganized and uncertain, while Kupfer was remote and disengaged, delegating operational responsibility to Regier. This was a very different management style from the obsessive hands-on involvement of Spitzer, later emulated by Frances. Robinowitz reported back to the APA Board the sobering conclusions of the oversight committee: “There is a serious problem with the DSM, and we’ve got to fix it.”

  The board of trustees took Robinowitz’s comments to heart but was unsure what to do. To change horses in midstream when the process was being publicly questioned might lend credence to the criticism and undermine the credibility of the DSM. Instead, the board fashioned a workaround by establishing two ad hoc review committees: one to review the scientific evidence justifying any proposed change, and another to review the clinical and public health implications of any change. While adding new committees is hardly an ideal solution to a management problem, it did serve to deflect much of the criticism coming from within the psychiatry profession itself.

  Meanwhile, the Internet was still teeming with accusations. One of the most prominent was the claim that the DSM-5 was pathologizing normal behavior. Ironically, the pathologization of the ordinary had been one of Robert Spitzer’s most pointed criticisms of the psychoanalysts, who quite explicitly talked about the psychopathology of everyday life and argued that everyone was a little mentally ill. One of the great contributions of Spitzer and the DSM-III was to draw a bright, clear line between the mentally ill and the mentally well, and even within the chaos of the DSM-5 that division was being adhered to.

  Most of the invective about pathologizing normal behavior was provoked by diagnoses that sounded trivial or sexist to casual observers, such as hoarding disorder, binge eating disorder, and premenstrual dysphoric disorder. Yet the case for designating each of these conditions a disorder was supported by data or extensive clinical experience. Take hoarding disorder, one of the new entries in the DSM-5. This condition is associated with the compulsive inability to throw things away, to the point where detritus obstructs one’s living environment and substantially reduces the quality of one’s life. Though we all know pack rats who are reluctant to throw away old items, individuals suffering from hoarding disorder often accumulate so much stuff that the looming heaps of debris can present a serious health hazard.

  I once treated an affluent middle-aged woman who lived in a spacious apartment on the Upper East Side of Manhattan but could barely open the door to get into or out of her apartment because of the wobbly towers of accumulated newspapers, pet magazines, unopened purchases from cable shopping networks, and accouterments for her nine cats. Finally she was threatened with eviction when neighbors complained of the foul odors and vermin emanating from her unit. Her family hospitalized her, and she was treated for the first time in her life for her hoarding disorder. Three weeks later, she was discharged and returned home to a pristine apartment that her family had cleaned out. She now takes clomipramine (a tricyclic antidepressant often used to treat obsessive-compulsive disorder) and receives cognitive-behavioral therapy to help her manage her impulses. So far, she lives a much happier life in her clean and roomy apartment, with no complaints from her neighbors or family.

  As someone intimately involved with the DSM-5 development process, I can tell you that there is no institutional interest in expanding the scope of psychiatry by inventing more disorders or making it easier to qualify for a diagnosis. We have more patients than we can possibly handle within our current mental health care system, and we already face enough challenges trying to get insurance companies to reimburse us for treating diagnoses that have been established for decades. Perhaps the strongest piece of evidence that psychiatry is not trying to pathologize ordinary behaviors can be found in the changing number of diagnoses: the DSM-IV had 297. The DSM-5 reduced it to 265.

  When I became president-elect of the APA in the spring of 2012, I inherited the responsibility for the DSM-5. It would be completed and published during my term, and its success—or failure—would play out on my watch. I was somewhat consoled by the fact that the ad hoc committees established by my predecessors had been effective and had substantially improved the DSM development process. The internal grumbling had ceased, a clear and rigorous process for creating or changing disorders was established, and most important, each tentative set of diagnostic criteria was accumulating more evidence and undergoing more deliberation than during any previous DSM.

  In the final six months before the DSM-5 was to be presented to the APA Assembly for a vote, APA president Dilip Jeste and I set up a systematic “Summit” process to conduct a final review and approve or reject every proposed disorder. The final set of approved diagnoses would then be presented en masse to the APA Assembly, just as occurred with Spitzer’s DSM-III thirty years earlier. Representatives of the Task Force, work groups, and committees all participated, and every one of us knew exactly what was at stake: the credibility of psychiatry in the twenty-first century, and the welfare of every patient whose life would be affected by the decisions we made.

  During the Summit review process, we always sought consensus. If there was not clear scientific evidence or a compelling clinical rationale supporting a new diagnosis or a revision to an existing diagnosis, then the version in the DSM-IV was left unchanged. The majority of the disorders were approved without controversy, though there was heated debate over personality disorders—a perennial source of contention among psychiatrists with roots in Freud’s earliest psychoanalytical theories. There were also disagreements about whether to include a new diagnosis for children called “disruptive mood dysregulation disorder”; whether someone could be diagnosed with depression while still grieving the death of a loved one; and whether the criteria for schizophrenia should be modified. These three changes were eventually approved, though the newly proposed configuration of personality disorders was not.

  Finally November 10, 201
2, arrived—the day of the DSM-5 vote. The APA Assembly convened in the JW Marriott in Washington, DC, exactly two blocks from the White House, less than a week after Barack Obama had won the right to reside there for another four years. After all of the thunderous controversy over the DSM-5 online and in the media, when the final vote to approve it came, it was downright anticlimactic. There was very little discussion on the floor of the ballroom, and the vote itself was quick and unanimous, a far cry from the frenzied activities and last-ditch efforts to rework the DSM-III.

  The DSM-5 was published on May 19, 2013, concluding the longest period of development of any DSM (seven years) and the longest period between DSM editions (nineteen years). But this delay was not so much due to the controversy and unwieldy process as it was a reflection of the unprecedented scope of work that went into the DSM-5’s development. The new edition of the Bible of Psychiatry incorporated more data, evidence, and discussion than the previous four editions combined: 163 experts, including psychiatrists, psychologists, sociologists, nurses, and consumer advocates, devoted more than one hundred thousand hours of work, reviewed tens of thousands of papers, and obtained input on diagnostic criteria from hundreds of active clinicians. Except for the chair and vice chair, none of these contributors received any payment for their efforts.