When Grief Doesn’t Abate
Every Monday when the psychiatry team reviewed patient logs, the sociologist in the room listened with curiosity. It was the mid ’90s, and Holly Prigerson was a new postdoc working with University of Pittsburgh psychiatry professors Ellen Frank and Charles F. Reynolds III. Prigerson had recently defended a sociology doctoral dissertation at Stanford on end-of-life care, and while the subject of mood disorders was unfamiliar to her, data analysis was not.
The psychiatrists were tracking bereaved patients dealing with what they thought was depression. Week after week, the patients’ grief scores remained high, but their response to depression treatments remained flat.
The psychiatrists initially thought the grief scores were benign, since grief wasn’t characterized as a mental illness. “You don’t know that the depressive symptoms are any more—or less—lethal, toxic or benign than the grief symptoms,” Prigerson pointed out. They invited her to explore that assumption.
After culling through the team’s data sets, Prigerson unearthed a distinct symptom cluster. She realized that while a mental illness like depression can be triggered by the trauma of losing a loved one, these bereaved patients weren’t experiencing depression (only some overlapping symptoms), and therefore they weren’t responding to treatments for it. Plus, they were experiencing something different from normative grief (typically, the most intense reactions of shock and disbelief dissipate over time). Their grief was prolonged, and their symptoms included constant yearning for the deceased, avoiding reminders of the death, reduced capacity for self-care and rumination about the future.
Most alarming were the results of a predictive model that Prigerson and the team put together to analyze what they considered “complicated grief.” It showed the cluster of symptoms was significantly associated with poor health outcomes like hospitalizations, sleep problems, cancer and suicidality. The idea of pathological grief existed, but it was not well understood or treated, says Reynolds: “Systematic clinical assessment had not been well worked out or established.”
In 1995, Prigerson was the first author of the Pitt team’s Inventory for Complicated Grief. The validated instrument underpins the tools for diagnosing prolonged grief today. Prolonged grief disorder is now the syndrome’s official name, coined in a 2009 paper by Prigerson and colleagues at Cornell University, where she is the Irving Sherwood Wright Professor of Geriatrics and codirector of the Center for Research on End-of-Life Care with her spouse, Pitt alumnus Paul Maciejewski (MA ’96). The disorder is gaining visibility, particularly after being accepted in November 2020 for inclusion in the forthcoming edition of the American Psychiatric Association’s tome, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR).
After identifying the disorder, the Pitt team reached out to their departmental comrade, Katherine Shear, an MD with expertise in anxiety disorders, to ask for help with designing treatments. Prolonged grief encompasses hallmarks of anxiety, namely avoidance and rumination; so Shear tailored common anxiety treatments such as exposure therapy for overcoming avoidance. She led a pilot study and the first randomized controlled trial to evaluate the treatments’ effectiveness. The good news: Many patients improved. Shear went on to direct several multi-institutional trials and now heads a center focused on the disorder at Columbia University, where she is the Marion E. Kenworthy Professor of Psychiatry.
In 2019, Prigerson and Shear were among the leaders with a Pitt connection who presented at an American Psychiatric Association workgroup meeting to evaluate the literature on prolonged grief over the previous quarter century and establish official criteria for the disorder’s addition to the DSM-5-TR. Although there have been concerns about pathologizing the natural, if unwanted, human experience of grief, the body of literature has shown that patients with prolonged grief disorder only respond to targeted treatments.
Shear praises Pitt’s psychiatry department as a “generative department” that fosters the an environment where disorders can be clarified and treated. “It was . . . a natural outgrowth, I would say, of a department that had such strength in both mood and anxiety disorders for so long.”
Pitt researchers have studied prolonged grief in children and adolescents as well. Nadine Melhem, associate professor of psychiatry, and David Brent, professor of psychiatry, were the first to characterize the course of grief reactions and identify the phenomenology of prolonged grief in bereaved children and adolescents. Melhem adapted a version of Prigerson’s inventory for those populations. She also coauthored several papers with Shear on prolonged grief in adolescents and adults.
Melhem conducted one of the first mental health surveys during the pandemic. Her initial data from about 400 adolescent and adult respondents who lost a loved one to COVID-19 show 55% are experiencing symptoms associated with increased risk for developing prolonged grief. That’s concerning, says Melhem. The typical rate among bereaved people for developing the disorder is around 10%.
Raising awareness of the disorder and its treatments is essential, says Shear, particularly among professionals who may be misdiagnosing patients. Shear notes that for every life lost to COVID-19, about nine close contacts are grieving, according to a multiplier calculated by sociologists last year. Other studies suggest the rate of bereaved family and friends is even higher in this multifarious pandemic.
“We don’t stop having a relationship with someone who we are not physically with,” says Shear. Grief is a process that never completes, she says, but people can make peace with their loss and find ways to re-engage with life while continuing to honor their loved one.
Takeaway: Patients with intense grief symptoms lasting longer than a year may need to seek diagnosis and treatment.