New paths for people with prolonged grief disorder

Mourning the death of his wife, the 20th-century writer C.S. Lewis described grief as "a sort of invisible blanket between the world and me." Anyone who has lost a loved one—that is, virtually everyone who has lived to adulthood—has experienced that fog of grief.

For most people, that blanket lifts with time. But for some, the pain lingers for years.

Distinct from depression, prolonged grief is marked by a pervasive yearning for the deceased. It is most common among people who have lost a child or a romantic partner and is more likely to occur after sudden or violent deaths, such as deaths by homicide, suicide or accident. Evidence suggests that about one in 10 bereaved people develops prolonged grief disorder, according to a meta-analysis by PhD candidate Marie Lundorff, at Aarhus University in Denmark, and colleagues (Journal of Affective Disorders, Vol. 212, No. 1, 2017).

Without treatment, the condition can persist indefinitely, leading to problems such as substance abuse, suicidal thinking, sleep disturbances and impaired immune function, according to a review by M. Katherine Shear, MD, a professor of psychiatry and director of the Center for Complicated Grief at the Columbia University School of Social Work (The New England Journal of Medicine, Vol. 372, No. 2, 2015).

Now, researchers and clinicians have a new tool for diagnosing that ongoing grief. The World Health Organization is expected to include prolonged grief disorder in its forthcoming 11th revision of the International Classification of Diseases (ICD-11). The ICD-11 describes prolonged grief disorder as persistent and pervasive longing for, or preoccupation with, the deceased that lasts at least six months after loss. In addition, people with the disorder often experience intense emotional pain (such as sadness, guilt or anger), difficulty accepting the death, emotional numbness, a feeling that part of them has been lost, an inability to experience positive mood and difficulty engaging in social activities.

Although some grief researchers still disagree about how best to characterize persistent grief, research has validated the diagnostic criteria for prolonged grief disorder, and psychologists and other mental health experts are developing evidence-based treatments to help those whose mourning interferes with the activities of living.

Successful treatment is possible, says Robert Neimeyer, PhD, a professor of psychology at the University of Memphis, director of the Portland Institute for Loss and Transition and editor of the journal Death Studies. "There are some very useful, practical things that we can do alongside the bereaved that can make a huge difference in whether or not they remain stuck in an endless grieving, or whether they are able to move forward."

Grief by any other name

Over the past two decades, researchers have made a convincing case that prolonged grief is a disorder distinct from the normal grieving process. But there are still disagreements in the field in several areas, such as the diagnostic criteria for the disorder, the point at which normal grieving becomes a disorder and even what to call it.

Two decades ago, Holly Prigerson, PhD, now a professor in geriatrics at Weill Cornell Medicine and co-director of the Weill Cornell Medicine Center for Research on End-of-Life Care, and colleagues demonstrated that bereavement-related depression was different from what they called "complicated grief" (The American Journal of Psychiatry, Vol. 152, No. 1, 1995). Some researchers still use that name, though "prolonged grief" appears to be emerging as the favored term. In 2009, Prigerson and colleagues proposed a set of criteria for prolonged grief disorder. Those criteria differed somewhat from previous definitions of complicated grief and described the primary experience of yearning, as well as several other symptoms: feeling emotionally numb, stunned or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; and difficulty moving on with life (PLOS Medicine, Vol. 6, No. 8, 2009).

Seeking a compromise between definitions of complicated and prolonged grief, the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5) created yet another condition: persistent complex bereavement disorder, listed in the appendix as a disorder requiring further study. The diagnosis set 12 months as the threshold after which normal grief may become disordered.

Many researchers take issue with that cutoff point, however. "If you are suffering for one year, by that point the psychopathology is a downward spiral," says George A. Bonanno, PhD, a professor of psychology at Teachers College of Columbia University who studies loss and trauma. "The point of diagnosis is to capture people earlier on, but the recent DSM is not allowing that." He and other experts are hopeful that the ICD-11’s simplified description of prolonged grief, which sets the threshold at six months after loss, will help the field coalesce around a more functional definition.