Debate Continues Over Prolonged Grief Disorder

Two years ago, prolonged grief disorder (PGD) was added to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR) as a new psychiatric illness. The decision generated heated debate with strong opinions for and against the move.

Some argued that PGD pathologizes a normal human experience and took issue with setting a precise timeline for grief. Others cited the difficulties in distinguishing PGD from depression and normal bereavement and feared that the diagnosis could lead to the medicalization of mourning.

Still others felt grieving people needed validation and that implying their response is dysfunctional could cause more harm than good.

Two years later, the debate continues.

How Is PGD Different From Normal Grief?

According to the DSM, PGD — previously referred to as complicated grief and persistent complex bereavement disorder — is characterized by intense and disabling yearning for or preoccupation with a deceased person that lingers for at least 12 months after the loss.

Missing a loved one in the initial months following their death is normal, and bereaved people often temporarily lose interest in usual activities.

Beyond the first anniversary of the death, however, it is “surprisingly” rare (4%-15%) for bereaved individuals to yearn intensely and constantly for the deceased person, Holly G. Prigerson, PhD, and Paul K. Maciejewski, PhD, with Weill Cornell Medical College, New York City, noted in a recent article in World Psychiatry.

Individuals who exhibit these thoughts and feelings beyond the first anniversary of the death should be evaluated for PGD — “a serious mental disorder that puts the patient at risk for intense distress, poor physical health, shortened life expectancy, and suicide,” they advised.

How Is PGD Diagnosed?

According to the DSM-5-TR, the diagnostic criteria for PGD are the development of a persistent grief response lasting longer than 1 year in adults and 6 months in children and adolescents.

The disorder is characterized by the presence of at least three of the following symptoms to a clinically significant degree on most days for the past month:

• Intense yearning/longing for the deceased person
• Preoccupation with thoughts or memories of the deceased person
• Identity disruption
• Marked sense of disbelief about the death
• Avoidance of reminders that the person is dead
• Intense emotional pain related to the death
• Difficulty reintegrating into one’s relationships and activities after the death
• Emotional numbness
• Feeling that life is meaningless as a result of the death
• Intense loneliness as a result of the death

Prigerson and colleagues have developed and validated several tools to screen for PGD, including a self-report tool called PG-13-Revised. Patients respond to 13 questions that seek to determine whether they meet the DSM criteria. Responses range from 1 (not at all) to 5 (overwhelmingly), and a summary score ≥ 30 is consistent with a diagnosis of PGD.

Other diagnostic tools include the Structured Clinical Interview for Diagnosing Prolonged Grief Disorder, also developed at Cornell, and Columbia University’s Center for Prolonged Grief, Brief Grief Questionnaire.

Weill Cornell Medicine also offers an online tutorial to guide clinicians on how to make a differential diagnosis of PGD.

What’s the Best Treatment?

There are currently no official guidelines for treatment of PGD, Rita Rosner, PhD, with Catholic University of Eichstätt-Ingolstadt, Germany, told Medscape Medical News.

Differentiating between normal grief and PGD is critical, said Rosner, who has studied PGD treatment.

If patients do meet criteria for PGD, “psychotherapy is helpful. Below the clinical threshold, counseling and supportive groups might be helpful,” she said.

Indeed, multiple randomized controlled trials have shown that PGD can be successfully treated, with grief-focused cognitive behavioral therapies (CBTs) having the strongest evidence to support their use in treating PGD.

In a study of more than 200 patients with PGD, Rosner and colleagues found that integrative CBT for prolonged grief was superior to present-centered therapy after treatment and at follow-up with regard to comorbid symptoms.

The Healing Emotions After Loss trial showed that PGD therapy is the “treatment of choice” and the addition of citalopram “optimizes” the treatment of co-occurring depressive symptoms.

A systematic review and meta-analysis published in April examined 22 randomized controlled trials on grief-focused CBT. Researchers concluded that there was “moderate” evidence to support the efficacy of grief-focused CBT over other psychotherapies for PGD.

Ongoing Debate?

Joanne Cacciatore, PhD, professor in the School of Social Work at Arizona State University, Tempe, Arizona, opposed the addition of PGD in the DSM, and her opinion has not changed, she told Medscape Medical News.

On the contrary, “it has solidified, as I’m now meeting grieving parents who’ve been told they have a ‘mental disorder,’ when in fact, their responses are normal given the catastrophic nature of the loss,” she said.

“Grief warrants strong social support and compassionate connection, not medicalization,” Cacciatore and Allen Frances, MD, with Duke University, Durham, North Carolina, wrote in a letter in The Lancet Psychiatry.

Prigerson, on the other hand, said she has seen firsthand how opinions can change when presented with the evidence.

“There will always be detractors — grief is a normal natural part of life — but when I show detractors the vast amount of evidence demonstrating that there is a small minority of people who are severely distressed and disabled by their unrelenting heartache that can last years, and when they learn 100% of those who met criteria for PGD wanted help for these grief symptoms and that standard psychotherapeutic and psychopharmacologic treatments have not proven efficacious, they admit there is a need to recognize this disorder,” Prigerson said.

“They also have personally conceded to me that standardized (ie, uniform and agreed upon) criteria are needed to study the problem and evaluate treatment efficacy,” she added. “In fact, some of these very detractors have published PGD as an outcome in their studies.”

Prigerson, Cacciatore, and Rosner had no relevant disclosures.