lea’e us nought but grief an’ pain…

Posted on Tuesday 11 December 2012

But, Mousie, thou art no thy lane,
In proving foresight may be vain;
The best-laid schemes o’ mice an’ men
Gang aft agley,
And lea’e us nought but grief an’ pain
For promised joy!
To a Mouse On Turning her up in her Nest with the Plow by Robert Burns

This article didn’t get it totally right, but it’s a fair shot. The DSM-5 Task Force did, indeed, plan on a paradigm shift – a neuroscience based  DSM with biological markers scattered throughout. But they didn’t have any biomarkers to work with as time closed in on them. And like most newspaper articles about this topic, he left out the failure of the Field Trials and what that implies [reliability, the cornerstone]. But the author captured the essence of the process. The opening line is worth the price of the paper:
A Tense Compromise on Defining Disorders
New York Times
By BENEDICT CAREY
December 10, 2012


They plotted a revolution, fell to debating among themselves, and in the end overturned very little except their own expectations… The committee of doctors appointed by the psychiatric association had attempted to execute a paradigm shift, changing how mental disorders are conceived and posting its proposals online for the public to comment. And comment it did: Patient advocacy groups sounded off, objecting to proposed changes in the definitions of depression and Asperger syndrome, among other diagnoses. Outside academic researchers did, too. A few committee members quit in protest… Yet many experts inside and outside the process said the final document was not radically different from the previous version, and its lessons more mundane than the rhetoric implied. The status quo is hard to budge, for one. And when changes do happen, they are not necessarily the ones that were intended… But the deeper story is one of compromise. It is most evident in how the committee handled three of the thorniest diagnoses in psychiatry: autism, depression and pediatric bipolar disorder.
In the discussion of the depression revisions, he focuses on the silly debate about bereavement – a needless change – and ignores the main point that the category Major Depressive Disorder is way overly inclusive and in chronic need of revision, but wasn’t touched [I think it's hilarious that they insisted on reminding us that some people get depressed with grief/loss, since the only people on the planet who don't already know that are the neoKraepelinian psychiatrists]:
The group working on depression declared early on that it wanted to eliminate the so-called bereavement exclusion, which stated that grieving the loss of a loved one should not be considered a clinical disorder, though it shares many of the same outward signs. Grief has always been a normal reaction to death, not a kind of depression. Advocacy and support groups, such as those representing people who have lost a child, objected furiously to the idea that the bereaved might be given a diagnosis of depression. “This was just astonishing, that they would eliminate the exclusion, and a distortion of the research on the subject,” said Jerome Wakefield, a professor of social work and psychiatry at New York University, who did not work on the manual. In the end the committee cut a deal. It eliminated the grief exclusion but added a note in the text, reminding doctors that any significant loss — of a job, a relationship, a home — could cause depressive symptoms and should be carefully investigated. “It’s like they took it all back,” Dr. Wakefield said. “I don’t like the way it was done — in a footnote — but it’s there.”.
The Autism debate was kind of silly. They got into this major war about eliminating Aspergers Syndrome. Probably neither here nor there. I think the distinction between Aspergers and Autism is clinically useful myself. It was a big deal to the parents, so they wrote in a "grandfather’s clause" for existing patients. They made their compromise on administrative service-delivery grounds. Hardly the stuff of a medical diagnostic system. The more cynical version is that they wanted to cut off the top tier of the diagnosis to decrease the service load [which is what many parents suspected]:
The debate over autism was even more furious, and it resulted in a similar rapprochement. From the outset, the committee intended to tighten the definition of autism and simplify it, eliminating related labels like Asperger syndrome and “pervasive developmental disorder not otherwise specified,” or PDD-NOS. The rate of diagnosis of such conditions has exploded over the past decade, in part due to the vagueness of the definitions, and the committee wanted to draw clearer boundaries. It proposed a single “autism spectrum disorder” category, with stricter requirements. Some outside researchers raised concerns. In January one of them, Dr. Fred Volkmar of the Yale School of Medicine, who had quit the committee in protest, presented research suggesting that 45 percent or more of people who currently had an autism or related diagnosis would not have one under the proposed revision. Autism groups reacted immediately, fearing that the change in the diagnosis would deny services to children and families who need them. The committee countered with its own study, suggesting that the new definition would exclude about 10 percent of people currently with a diagnosis. And again, the experts took a half step back. The new, streamlined definition was approved, but with language that took into account a person’s diagnostic history. “It’s explicit that anyone who’s had an Asperger’s or autism or PDD-NOS diagnosis before is now included,” said Catherine Lord, a committee member who worked on the new definition and who is director of the Center for Autism and the Developing Brain in New York. “Essentially everyone gets in.”.
With depression and autism, they made their decisions on Administrative rather than clinical grounds. With the pediatric bipolar vs disruptive mood dysregulation disorder, question, the form of the debate was telling. They wanted to undermine the permission to over-medicate these kids granted by Biederman’s jury-rigged Bipolar Child notions. So they made up a disorder that might as well been defined as "those kids Biederman called Bipolar." What we need to know is what’s wrong with those children? are they a group? what helps? what is their course over time? Instead of bearing down on the causalities, they obsessed about how to direct treatment. It is not the best solution because it’s reductionistic and the thirty year history of the DSMs shows us that reductionistic categories lead to a dead end eg MDD:
Pediatric bipolar disorder posed a different challenge. In the 1990s and 2000s, psychiatrists began giving aggressive, explosive children a diagnosis of bipolar disorder in increasing numbers. The trend appalled many patient advocates and doctors. Bipolar disorder, which is characterized by episodes of depression and mania, had previously been an adult problem; now the diagnosis is given to children as young as 2 — along with powerful psychiatric drugs and tranquilizers that also cause rapid weight gain. The committee wanted to stop the trend in its tracks, said experts who were involved. Most of the children treated for bipolar disorder did not have it, recent research found. The committee settled on an alternative label: “disruptive mood dysregulation disorder,” or D.M.D.D., which describes extreme hostility and outbursts beyond normal tantrums. “They essentially wanted to have some place for these kids, and D.M.D.D. was all they had in their kit,” said Dr. Gabrielle Carlson, a child psychiatrist at Stony Brook University Medical Center, who provided some outside consultation. “These are mostly kids who have A.D.H.D. or what we would call oppositional defiant disorder, but with this explosive feature. They need help; you can’t wait forever. The question was what to call it, without pretending we know enough to saddle them with a lifelong diagnosis” like bipolar disorder. D.M.D.D. has its own problems, as many experts were quick to point out. It could be a symptom of an underlying condition, as Dr. Carlson argues. It could “medicalize” frequent temper tantrums. It’s brand new, and no one knows how it will play out in practice. But it is now in the book — because it was the best solution available, experts inside and outside of the revision process said.
"They plotted a revolution, fell to debating among themselves, and in the end overturned very little except their own expectations…" "… many experts inside and outside the process said the final document was not radically different from the previous version, and its lessons more mundane than the rhetoric implied." Here, author Benedict Carey captures the essence of things. While there’s much ado about some unnecessary things they did do – bereavement, Asperger’s, the Bipolar Child, Somatoform Disorder – there was even more along the way about some bizarre things eg Attenuated Psychosis. And in the background, there was no revision of the things that needed revising. It’s little different from the DSM-IV and there’s the added  burden of a vote of no confidence from the Field Trials.
From beginning to end, many experts said, the process of defining psychiatric diagnoses is very much like finding the right one for an individual: it’s a process of negotiation, in many cases. “That’s one of the take-aways from all this, and I think it’s a good one,” Dr. Carlson said. “A diagnosis is a hypothesis. It’s a start, and you have to start somewhere. But that’s all it is.” One of the committee’s most ambitious proposals was perhaps the least noticed: a commitment to update the book continually, when there’s good reason to, rather than once every decade or so in a giant heave. That was approved without much fanfare.
Throughout the process, they continually countered criticism with "nothing has been decided yet." Now they say it will be a "living document" changed along the way. I expect that’s another way to deflect criticism. Unless they publish it in a loose leaf binder, that seems an empty promise. And with the layers of bureaucracy involved in third party/medicare/medicaid  reimbursement, it seems an imponderable task…

But, Mousie, thou art no thy lane,
In proving foresight may be vain;
The best-laid schemes o’ mice an’ men
Gang aft agley,
And lea’e us nought but grief an’ pain
For promised joy!
To a Mouse On Turning her up in her Nest with the Plow by Robert Burns
  1.  
    Annonymous
    December 11, 2012 | 11:44 PM
     

    Typos:

    “So the made up a disorder that might as well been defined as “those kids Biederman called Bipolar.”
    Wrote “the” instead of “they”

    Asperger’s is written as Asberger’s throughout.

    Feel free to delete this message.

    Very nice post.

  2.  
    December 11, 2012 | 11:55 PM
     

    I’ll keep it as a reminder of my challenged spelling – a chronic malady…

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