I applaud the new name and official status. To be clear, I am not an advocate of pathologizing grief. I make the assumption that grief is the natural response to loss, and that it is not pathological. There’s no right and no wrong way to grieve. Each of us grieves each loss we experience in a unique way. Also, there is a sense in which all grief is prolonged. It doesn’t go away completely after someone close dies, but it does move into the recesses of our minds where it no longer interferes with our lives and can even contribute to our learning and growth over the years. Grief usually recedes into the background over time, but not always.
A minority of bereaved people find themselves stuck in a place where grief remains strong and invasive, infiltrating their lives and wreaking havoc with their physical, emotional and/or social health. This form of prolonged grief can be identified reliably and causes sufficient distress and impairment to qualify as a mental disorder. People who are caught up in prolonged grief are often at their wits end. The future looks bleak as they struggle to find meaning in their lives. It’s not uncommon for them to have suicidal thoughts and they often criticize themselves for even fleeting moments of pleasure or enjoyment. Their relationships with friends and family suffer. Yet when they seek help they are frequently told they are depressed or have some other mental disorder. Sometimes they are told that they are simply grieving in their own way and no one should tell them otherwise. This is why we need a DSM-5 diagnosis.
Prolonged Grief Disorder (PGD) has been extensively researched over the past three decades under various other names, including “unresolved”, “complicated” or “traumatic” grief and most recently, Persistent Complex Bereavement Disorder. As a result of this research, Prolonged Grief Disorder was approved by member nations of the World Health Organization in 2019 for inclusion in the International Classification of Diseases (ICD-11) scheduled to be implemented in 2022. Correspondingly, in the fall of 2020 the Trustees of the American Psychiatric Association approved the inclusion of a new diagnosis of PGD in DSM5. You can find out more about diagnostic criteria here.
A helpful way to think about prolonged grief disorder
One way I learned about prolonged grief disorder was from reading about loss in a book by John Bowlby, the English psychiatrist who is the originator of attachment theory. In discussing the excruciating pain associated with loss of a loved one, Bowlby asserted that there are natural defensive coping processes that allow us respite from the pain. He went on to say that “The criteria that most clearly distinguishes healthy forms of defensive processes from pathological ones are the length of time during which they persist and the extent to which they influence a part only of mental functioning or come to dominate it completely.” [1] At the same time, he highlighted the importance of making progress in accepting the reality of the loss and restoring the capacity to thrive in the future. He claimed that without doing so - presumably when the defensive processes are too persistent and influential - a person finds themself in “a state of suspended growth in life in which he is held prisoner”. Bowlby’s observations fit well with what I came to understand from listening to the stories of many hundreds of people with PGD, and overseeing their treatment.
What this means is that prolonged grief disorder is not a completely different form of grief. Rather, it is the continuation of natural acute grief beyond the time it usually takes for this intense grief to abate. It’s helpful to understand this tenacious form of intense grief as resulting from the persistence and excessive influence of natural early coping strategies which largely function to keep the reality of the loss at bay. In doing so, they interrupt of the process of accepting the reality of the loss and/or restoring the capacity for wellbeing which, in turn, stalls the natural evolution of acute to integrated grief.
A proven efficacious treatment
About 20 years ago, I began work to develop a short-term therapy to help these people. I led teams from multiple laboratories that tested Complicated Grief Therapy (CGT) in three large studies funded by the National Institute of Mental Health. The therapy, which we now call Prolonged Grief disorder Therapy (PGDT) uses simple, well-studied procedures. We found that it produced strong results, with an overall rate of 71% of study participants considered much improved. This compared to a 30% response rate to Interpersonal Psychotherapy, an excellent treatment for depression. Currently our team at the Center for Prolonged Grief is working to help professionals and others in the community to recognize this condition, and to access helpful therapy. The inclusion of PGD as a new psychiatric diagnosis is a major step forward in the effort to spread the word.
A caveat
Notwithstanding our strong endorsement of its inclusion in DSM-5 and ICD-11, we are respectful of colleagues who are concerned that inclusion of PGD in the psychiatric diagnostic system might stigmatize and medicalize a normal response to loss. Unfortunately, it is the case that mental disorders, in general, are often stigmatized. We consider PGD as being one of many conditions for which we need to fight stigma. Yet we also appreciate the need for extra sensitivity around a grief-related disorder because grief is universal and variable in its manifestations and duration. In fact, we see this “disorder” as a variant of a normal response in which the natural evolution of grief is suspended due to interference with the process of adapting to the loss. In applauding the establishment of a new diagnosis, we must be vigilant to possible stigma or undermining of self-respect that might be associated with the idea of suffering from a mental disorder.
Still, it has been difficult to convince mental health professionals and the educational institutions that train them to prioritize understanding of grief. Inclusion of PGD in DSM-5 will help encourage them to do so. Additionally, the presence of DSM diagnostic criteria will permit researchers to study prevalence rate, to communicate clearly among each other, and to benchmark research findings to a consistent way of identifying this syndrome. There will also be greater awareness of and access to services and better recognition of PGD by bereaved people and their friends and family.
The inclusion of PGD in DSM-5 is a landmark event. Let’s take advantage of the opportunities it affords.
Katherine Shear M.D.
Founding Director Center for Prolonged Grief Disorder
Columbia University School of Social Work
Columbia Vagelos College of Physicians and Surgeons
[1] Bowlby Loss Basic Books 1980 p. 140
Everything is very open with a precise clarification of the challenges. It was really informative. Your website is useful. Thanks for sharing!
Thank you for the information. Is there a directory of PGDT practitioners that I can refer clients to?
Yes! You can access the directory here.
This is such an important, clear and comprehensive explanation of this diagnosis and the need. We are so appreciative of this and of course, all the research and the treatment development that you and your team have provided to the field and those who experience this problem. Thank you.
Thank you for including me in this blog.
I agree that prolonged grief is a special category needing unique approaches for mental health. Thank you for bringing this forth.
Thank you for doing this important work. Yes, to Bowlby- and also don’t forget “Mourning and Melancholia” in conjunction with Kohut’s ideas about self disorders has very much to inform this discussion. Hard to accept and mourn loss when experienced as chunks of self missing.
Although there is some ambivalence among professionals and concern that normal grief will be pathologized with the new diagnosis, I agree with Dr. Shear. It is so important that we properly identify symptoms of grief and not occlude the underlying condition by labeling grief presentation as depression or another diagnostic category so that the person can be treated properly and function optimally.
Well-put. Thank you Katherine for your many years of work in this area and thanks to the Center for Prolonged Grief for working so diligently to improve understanding and treatment of this form or grief.