Overview:

The newest diagnosis in the DSM is deeply problematic. Here’s why.

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A knee to the groin: a perfect start to one’s day.

A month ago, as I sipped my tea and scanned The New York Times, I learned that a new diagnosis had been added to the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). I knew such an addition to the “Bible” of American psychology and psychiatry had been debated for decades. Labels like Pathological Grief or Complicated Grief were bandied about over the years. Now it would officially be called Prolonged Grief Disorder.

My defenses were up, for reasons I’ll get into later, but final judgment was withheld. But then came that metaphorical knee. In touting this breakthrough, DSM committee chair and former American Psychiatric Association President Paul Appelbaum claimed this diagnosis was for “parents who never got over it.”

You read that correctly. Parents who never got over it.

It’s safe to assume Dr. Appelbaum has never been close with anyone who’s endured the death of a child. Such a statement is callous at best, but I would argue it points to profound ignorance of a tragically common experience.

Guess what, Dr. Appelbaum? Parents who mourn the death of a child, no matter the age, no matter the cause, never get over it. I’ve known this as a psychiatrist for 28 years, as a human being for much longer. I expect I will now live it for my remaining years, since my son’s suicide last September. Reading these words from the one-time leader of my profession feels like a betrayal, a devaluation.

Given Appelbaum’s position of authority and leadership in crafting the latest DSM edition, his empathy failure casts a pall over the unveiling of this new diagnosis. But as we consider the substance of Prolonged Grief Disorder (PGD), we’ll see that Appelbaum’s poor performance on the interview circuit is the least of its problems.

Here’s what will now happen in the real world…Suffering individuals, already isolated in their loss, will feel shamed and stigmatized for their normal human responses.

Like all DSM diagnoses, the criteria for PGD have a “one from Column A, two from Column B” format. To be diagnosed with PGD, the loss must have happened a year ago or longer. The grieving person must report either intense longing for the dead person or preoccupation with thoughts of the deceased.

The sufferer must exhibit three or more additional symptoms. Possibilities include identity disruption (feeling as though a part of them has died), disbelief about the death, intense emotional pain, numbness, or difficulty reintegrating into previous relationships and activities.

Do you see the fatal flaw already? Yearning for the dead person and preoccupation with their absence are normal parts of grief. It’s long been recognized that these feelings can linger intensely for years, not the single year the DSM so graciously permits.

If a wife loses her husband of 40 years, if a child is suddenly ripped from a parent’s life, isn’t it natural to suffer “identity disruption” and intense emotional pain? These diagnostic criteria strike me as a pathologizing of normal human experience. While not as harmful as earlier DSM editions diagnosing homosexuality as sickness, or the World Health Organization labeling trans people as intrinsically ill until 2018, it certainly lands on the same continuum.

Besides inclusion criteria, many DSM diagnoses have useful exclusion criteria. You don’t diagnose Schizophrenia, for instance, if a person is paranoid and hallucinating in the throes of alcohol withdrawal or on a methamphetamine high.

Conversely, perversely, PGD doesn’t make allowances for the special horror inflicted by sudden traumatic loss, dead children, or death by suicide. (There are elements of such bereavement that are akin to Posttraumatic Stress Disorder, yet remain distinct from it, a topic for another article.) From personal and clinical experience, grief in these circumstances is an entirely different animal than mourning 88-year-old mom’s passing from chronic congestive heart failure. This is a grave omission on the DSM’s part.

Grief after suicide is inherently complicated. I know this, and other survivors tell me the same thing. The guilt from the woulda, coulda, shouldas is intense and goes on for years. The reintegration difficulties endure. Friendships alter, passions change. Before September 12th, a major part of my identity—you know, besides parent—was film critic, composing two reviews each week and attending a pair of festivals yearly. After this psychological megaquake, movies don’t seem terribly important any more.

DSM diagnoses always carry a provision that the condition “causes clinically significant distress or impairment in…important areas of functioning.” I would argue a suicide survivor lacking these things is rarer than a four-leafed clover. Did the American Psychiatric Association intend for suicide survivors and parents of dead kids to inhabit a perpetual Oprah moment? (You’ve got PGD, you’ve got PGD, you’ve got PGD!) I somehow doubt it, but this is the end result.

The New York Times article gives a window into the DSM sausage-making process that’s hardly flattering. The debate over the duration criteria—six months? twelve?—seemed driven more by public relations than good science.

In addition, the article indicts the PGD diagnosis as substantially about the Benjamins. Clinicians have a new billing opportunity! Hooray, new FDA indications for drugs!

Need I say diagnoses should never, ever be motivated in the slightest by considerations of commerce? Nonetheless, the claim that the enshrinement of PGD will allow clinicians to submit charges for necessary services is a hollow one. Mental health treaters learn quickly to bill creatively but ethically, to ensure our patients receive necessary services. If someone is crippled by grief but doesn’t meet full criteria for Major Depression or Generalized Anxiety, you call it Unspecified Depressive or Anxiety Disorder. This isn’t hard.

The Times article mentions that naltrexone is actively being studied for the medicating of PGD. I’ll review the clinical literature myself, if and when it becomes necessary. But a drug that reduces opiate and alcohol cravings repurposed as treatment for grief impresses me as Clockwork Orange-y.

Don’t misconstrue me, I’m totally sold on therapy for those hobbled by grief. Like the president of Hair Club for Men, I’m a practitioner and customer. I can’t imagine where I’d be without therapy since my son Josh took his life.

I also find the data compelling for the benefits of Complicated Grief Therapy, as developed by Dr. M. Katherine Shear and others. By all means, let’s create, study, and utilize targeted therapies. We just don’t need sloppy diagnostic categories to get us there.

Because here’s what will now happen in the real world. Busy primary care doctors, in ten-minute interviews, will slap a diagnosis on a patient in distress, a diagnosis that will follow them forever after in their medical record. Inexperienced social workers, too often the backbone of shorthanded community mental health clinics, will do the same. Suffering individuals, already isolated in their loss, will feel shamed and stigmatized for their normal human responses.

This will do lasting harm. And I’m not going to get over it.

This column is Part 13 of the Secular Suicide Survivor series. Here’s how it began

Just get over it: The DSM, Prolonged Grief Disorder, and pathologizing human experience | Josh, smiling and proudly wearing his high school band jacket
My son Josh. Photo by author

Lincoln Andrews

Life seemed as good as it gets in early 2021, with a happy family, a job I loved, and a long-desired move out of the Bible Belt to the Pacific Northwest. My world split open on September 12th, when...