Prolonged Grief Is Now Labelled a Disorder. Not All Psychiatrists Agree.

At a time when many are facing extreme loss and pain, the “psychiatry bible” just included a new diagnosis: prolonged grief disorder. Some experts aren't happy about this.

Trigger warning: violent imagery, mental illness.

For the past thirty years, Holly Prigerson, a psychiatric epidemiologist, has been studying the multifaceted world of grief. 

She has served as faculty at both Yale and Harvard universities and her subjects have included a vast array of individuals: victims of the Rwandan genocide and the Kosovo War, those afflicted with trauma post the 9/11 attacks, and many more tragedies. 

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“Prolonged grief disorder (PGD) must be understood as very distinct from just longing for someone close who has passed away,” she said. “It is only human to grieve so we’re not saying that any grief is a disorder. PGD refers to a very specific condition where you are stuck and the grief is so intense that it absolutely incapacitates you, and you are unable to function on a daily basis.”

After years of back and forth, Prigerson’s research and proposition have finally been accepted by the American Psychiatric Association – the largest psychiatric organisation in the world. 

With this, prolonged grief is now listed as a disorder in the fifth and latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) – often considered the “psychiatry bible.” With this addition, pharmaceutical companies can now manufacture medicines to treat PGD, and psychiatrists will be able to bill patients with this specific diagnosis, and tailor their treatment to PGD as opposed to just depression or PTSD. 

According to the official definition, it is PGD if the grief response interferes with a person’s functioning for more than a year (in the case of adults) or six months (for children). It is characterised by a strong yearning for the deceased, as well as at least three of eight psychological states: disbelief, intense emotional pain, meaninglessness, loneliness, avoidance of reminders, numbness, lack of engagement, and identity disruption.

New York-based adult psychotherapist Christina Nolan said that the recognition of PGD will go a long way in the understanding of grief. 

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“One of my patients had lost a member of their primary family and I tried approaching them through my usual approach but the grief remained the same,” she told VICE. 

But can grief be measured? How much grief is too much for it to be labelled a disorder? And is the one-year yardstick even a good enough benchmark?

“Yes, we can measure it,” Prigerson insisted. “I’ve developed psychometric tools and published the research on thousands of bereaved subjects in peer-reviewed, top tier journals, including studies funded by the National Institutes of Health (NIH) to come up with this definition.”

She estimates that nearly 4 percent of bereaved individuals will fall within the PGD category, going by this parameter. 

Many Faces of Grief

When I put this definition before Aayushi Hemnani, a 24-year-old content writer, she felt that PGD might just explain what nothing else did. 

“My two-year-old brother passed away 12 years back in a very grisly and traumatic way,” she recounted. “We owned an ice factory in our hometown. One day while he was there, an electric saw malfunctioned, broke into three pieces, and one of them flung from the machine and hit his neck.” 

Hemnani remembers her brother as the only source of joy in the family. There was a deafening silence when her dead brother was brought home, and Hemnani fainted when she saw him in that state. 

“We have mentioned his name only thrice in the last 12 years. I’d get constant nightmares for almost six years, my breath would be flustered, and, as a family, we were stuck, unable to function.”

Hemnani sought medical help only recently. But none of the doctors seemed to understand how she truly felt – dissociating from the real world, trapped in her own mind. One of them diagnosed her with PTSD. Since then, she has been on various treatments: antidepressants, mood stabilisers – the works. But little changed.

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The recent discussions on PGD, however, give her hope that a specialised approach for people in her situation will help them manage their trauma and grief better.

Smil Lukram, a 31-year-old designer, told VICE how he lost his closest friend to COVID-19 last year. For a while, Lukram was in denial about his friend’s passing. 

“My friend was the glue that held people together,” Lukram said. “I kept denying it in my mind, asking myself why his death wasn’t hitting me. But now, life has become a landmine of triggers. The reminders of his death are everywhere, like when I see someone wearing black (he liked dressing up in black), when I pass his house, when I come across his favourite cuisine…”

When filmmaker Faraz Arif Ansari was 21, they lost their first love to an accident, six years into the relationship. “Nobody really prepares you for it,” they said. 

His passing took a toll on everything Ansari did. They had to take an extended leave from work because they had “absolutely no energy” to get out of bed for years. 

“We didn’t have a closure because I never even got to attend his funeral as I was in India and he was in the States,” they said. “What made the grief worse was that we had our life together all planned out. I guess when you are 16, the age we first met, you are allowed to dream a little.” 

With Tejaswi Subramanium, a 30-year-old writer and editor, grief was a “clarifying experience” and they had to traverse an arduous road to get to its other side. The death of their grandparents at an early age had derailed their daily functioning. 

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“I wondered how the world was just continuing to move forward. I became clinically depressed after ninth grade. Everyone around me thought I was just being lazy, throwing tantrums. Maybe if the doctors had known early on that I was also autistic and my grandparents had passed away due to mental health disorders (dementia and schizophrenia), they would’ve understood my grief better.”

Subramanium navigated grief for nearly a decade. Therapy “had its own journey” and took its time because “the intense grief would keep flooding in” just when they thought it was all over. And yet, this journey eventually enabled them to understand and accept something fundamental: “I realised that I was allowed to feel other things than just grief.” 

They added that neurodivergent people like them “often end up feeling grief more intensely than others” and that the inclusion of PGD might finally address our collective deficit in understanding grief. 

Complicating Grief

Despite many experts and those who’ve undergone long bouts of grief welcoming the classification, PGD does not command universal acceptance. 

American psychiatrist Allen Frances, who presided over the previous, fourth edition of the DSM, is one of those in disagreement. He is the founding editor of two well-known psychiatric journals: the Journal of Personality Disorders and the Journal of Psychiatric Practice. Previously, he served as the chair of the American Psychiatric Association overseeing the development and revision of DSM-4. 

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“There is no one correct or uniform way to grieve,” he told VICE. “So, we can’t say what is pathological and normal. And when the grief is so disabling that it puts you at the risk of life, we already have the capacity to diagnose someone with major depressive disorders. There is no value to adding PGD.”

However, Prigerson told VICE that it was the failure of the existing medical interventions that led her to research PGD in the first place. “We discovered that some patients were just not healing with the treatments for depression. The grief component was very much present; it never subsided. It had to be treated and understood separately from depression.”

But Frances notes that only three groups of experts, including the one led by Prigerson, have studied PGD. 

“In their hands, PGD makes perfect sense because if you are running a speciality clinic (or research group), where there is a highly selected population of previously treatment-resistant patients, PGD is very helpful in that narrow experience. But they never see the unintended consequences when the diagnosis is put to general use in other settings, where the patient selection is less tight with greater variety.”

If PGD is thrown open to the general public, it can be worrying what big pharma and less scrupulous psychiatrists could wield it as. And Frances said he learned this the hard way when he presided over the addition of two disorders during his chairmanship at DSM-4: Bipolar Disorder II and Asperger’s Syndrome. 

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“Out of the 94 proposals we received, we only accepted these two because there were careful literature reviews and field testing to back them up, and so, these additions seemed perfectly reasonable then,” he said. “But despite taking the worst-case scenarios into account, the rate of diagnosis went up to almost three to four times post that. Most of them were overdiagnosing and, by extension, overmedicating. The same will go for PGD because the instinct is always to medicate something that is actually part of the human experience.”

He said that in Bipolar Disorder II (a less severe type of bipolar disorder characterised by depressive and hypomanic episodes), even the “slightest good mood was seen as a high” and people were diagnosed and “given antipsychotic medications they didn’t need.” He added that while Prigerson might say that PGD applies in only specific, intense cases, in the real world, she won’t be present in every clinic cautioning people to use that definition carefully. 

“So, if a mother comes to a clinic saying that she has been intensely grieving for the nine-year-old son she lost a year back, she will be diagnosed with PGD and given a pill,” he said. “Families come apart around grief. You want to bring people together so that they can share that grief, as opposed to excluding that mother just because she has been grieving for more than a year.”

He added that diagnosing someone with PGD and giving them a pill, when they are actually just going through the natural process of grief, will lead to rampant false positives. “Educating people about [how to spot] signs of grief reaching a point of intensity that is clinically significant would be a better thing to do as opposed to introducing a new diagnosis.”

Joanne Cacciatore, an associate professor of social work at Arizona State University, who has published widely on grief and operates a retreat for bereaved people, disagreed with prolonged grief being listed as a disorder. She was also part of the advisory board for Prince Harry and Oprah Winfrey’s mental health show, The Me You Can’t See. 

“We live in a highly disconnected society that does not foster compassionate connections. We fail people who are grieving as a society over and over again and focus on blaming the victims. Let’s address this disorder of society,” she told VICE. 

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She said that it is “arrogant and dangerous” to come up with the kind of definition that the American Psychiatric Association has approved. 

In her blog, she presents various arguments against the inclusion of PGD. One of them talks about the various drugs being tested for its treatment, particularly naltrexone. This, she says citing research, will foster feelings of social disconnection not only with deceased loved ones but also with the living, thus depriving the grieving person of their support systems. 

“One of the arguments is that a PGD diagnosis will help a certain group of people get access to psychiatric services, but what we need to do is work as a group to ensure services are accessible anyway without having the label of a disorder,” she said. “And this is realistically possible if powerful people can actually lobby insurers and get this done. During my research work, I found that the most supportive group for grieving people is actually animals, followed by spiritual leaders. When animals are outperforming humans in terms of expressing compassion, that says a lot about where we’re failing.”

However, Prigerson said that in her study, instances of false diagnoses of PGD were just 1 percent.

Psychiatrist and psychotherapist Syeda Ruksheda sided with Prigerson and said that the PGD definition in DSM-5 was a good, basic benchmark. 

“We will not always be looking at the exact criteria of PGD to match,” she told VICE. “Even in depression, you have mild, moderate and severe categories. So, if you’re facing mild or any kind of depression, we won’t tell you to not be a snowflake. Similarly, understanding and treating intense forms of grief needs to begin somewhere.”

If you or someone you know is considering suicide, help is available. Call 1-800-273-8255 to speak with someone now or text START to 741741 to message with the Crisis Text Line.

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Tagged:

PTSD, depression, grief, psychology, psychiatry, prolonged grief disorder

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