As Vicki looked at her son in his hospital bed, she didn’t believe he was close to death. He was still young, at 33. It had been a bad car accident, yes, but he was still strong. To an outsider, the patient must have looked tragic — unconscious and breathing through a ventilator. But to Vicki, he was only sleeping. She was certain, in fact, that he had squeezed her hand.
Later that day, doctors pronounced Vicki’s son brain-dead. And for the next two years, she couldn’t stop thinking about him. She felt terribly guilty about the circumstances of his death: He and a friend had been drinking before they got in the car. She knew he was a recovering alcoholic, and that he had recently relapsed. She couldn’t shake the thought that she should have pushed him harder to go back to rehab. Every day Vicki flipped through a scrapbook of his photos and articles about his death. She turned his motorcycle helmet into a flowerpot. She let housework pile up and stopped seeing her friends. “She seemed to be intent on holding onto him,” one of her therapists wrote about her case, “at the cost of reconnecting with her own life.”
Vicki is part of the 10 percent of grievers who have prolonged grief, also known as complicated grief or traumatic grief. Grieving is an intense, painful, and yet altogether healthy experience. What’s unhealthy is when the symptoms of grief — such as yearning for the dead, feeling anger about the loss, or a sense of being stuck — last for six months or more.
Very unhealthy. Over the past three decades, researchers have tied prolonged grief to an increased risk of a host of illnesses, including: sleep troubles, suicidal thoughts, and even heart problems and cancer. (That’s not to say that grief necessarily causes these conditions, but rather that it’s an important, and possibly predictive, marker.)
At the same time, there’s been a big debate among researchers about what prolonged grief is, exactly. Is it a bona fide disorder? And if it is a disorder, then is it just another variety of of depression, or anxiety, or post-traumatic stress disorder (PTSD)?
Prolonged grief is in a psychiatric class of its own, according to Holly Prigerson, director of the Center for Research on End of Life Care at Weill Cornell Medical College. When Prigerson first started studying bereavement, back in the 1990s, “psychiatrists thought that depression was the only thing you had to worry about,” she says. “We set out to [determine if] grief symptoms are different and actually predict more bad things than depression and PTSD.”
Her group and others have found, for example, that antidepressant medications don’t alleviate grief symptoms. In 2008, another group found that the brain activity of prolonged grievers when looking at photos of their lost loved ones is different than that of typical grievers. In 2009, Prigerson proposed formal clinical criteria for complicated grief, which include daily yearning for the deceased, feeling emotionally numb, identity confusion, or difficulty moving on with life.
When I first wrote about prolonged grief, for a Scientific American article in 2011, Prigerson and others were lobbying for prolonged grief to be added as a formal diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the “bible” of psychiatric disorders. That didn’t happen; instead the condition is mentioned briefly in the appendix. “It’s frustrating,” Prigerson says. She is hopeful, though, that the disorder will be included in the next version of the International Classification of Diseases (ICD), the diagnosis guide used by the World Health Organization.
Why all this hoopla over the clinical definitions of pathological grief? Because the determinations made by the DSM and ICD dictate what treatments insurance companies will cover. From Prigerson’s perspective, it means that the roughly 1 million Americans who develop complicated grief each year will have to pay for treatment themselves (assuming they even get properly assessed). That’s an important point from a public health perspective. But more interesting to me is what that treatment is — and how it might shed light on what grief is.
The best treatment for prolonged grief seems to be cognitive behavioral therapy (CBT), a talk therapy in which the patient identifies specific thoughts and feelings, ferrets out those that aren’t rational, and sets goals for the future. In 2005, Katherine Shear of Columbia University reported that a CBT tailored for complicated grief worked for 51 percent of patients.
Part of that tailoring is something called “imaginal exposure,” in which patients are encouraged to revisit feelings or memories that trigger their grief. A similar exposure approach is often used to treat PTSD: Patients will repeatedly recall their most traumatic memories and try to reframe them in a less emotionally painful context. About half of people with PTSD who try exposure therapy get better.
A spate of studies suggest that exposure therapy is also an important part of complicated grief therapy. A couple of weeks ago, for example, researchers from Australia and Israel published a randomized clinical trial of 80 prolonged grievers showing that CBT plus exposure therapy leads to significantly better outcomes than CBT alone.
“The findings from this paper make me think we really need to explore the benefits of making people confront, in some sense, their worst nightmares and fears,” Prigerson says.
This is somewhat counter-intuitive, she adds, because grief has historically been defined as a disorder of attachment and loss, not trauma. In fact, only about half of people seeking treatment for complicated grief meet criteria for PTSD. If grief is a disorder of attachment, then it wouldn’t make sense to encourage patients to think about their loss even more. And yet, somehow this repeated exposure does seem to work.
“We don’t really know the mechanisms here,” Prigerson says. It could be that many people with complicated grief are also dealing with traumatic memories. Or it could be that grief and PTSD are not the same thing, “but that there’s something to exposure therapy that appears to tap into the attachment bond.”
These are questions for future studies. I’m struck by how often CBT techniques — which, at their most fundamental level, are simply about identifying destructive feelings and attempting to reframe them — work, and work for a wide range of disorders. It makes some of the livid arguments over what counts as “real” pathology, or what’s grief versus depression versus anxiety, seem rather beside the point.
In any case, exposure therapy worked for Vicki. After two years of struggling with regular talk therapy, she began seeing a CBT therapist. These sessions included imaginal exposures of her most vivid and painful memories: seeing her son in his hospital bed, and remembering him squeezing her hand. In addition to recalling the scene to her therapist every week, every day Vicky listened to audio tapes of herself telling the story.
Every week these recollections became less painful for Vicki. Her scores on tests of anxiety and grief dropped rapidly, particularly from the fourth to eighth week. She started reading sympathy cards that she had previously avoided. She stopped looking through the scrapbook, and started reaching out to friends and family again.
The treatment led to a dramatic reframing of the way she remembered her son and their relationship. “She said that repeatedly telling the story of his death had helped her to realize that he lived a dangerous life and that he was an independent adult who made his own life decisions,” the case report reads. At her final session, she said the treatment had allowed her “to begin to enjoy her life again.”
I made up Vicki’s name. I found her story in this case report, in which she’s called “Ms. B.”.