Prolonged grief disorder: detection, diagnosis, and approaches to intervention
The recent addition of prolonged grief disorder (PGD) to the ICD-11 and the DSM-5-TR has brought changes in what many mental health experts consider to be best practice in bereavement care. Because PGD is newly recognized as an official mental disorder, clinicians may be unfamiliar with current approaches to its detection, diagnosis and treatment. Here we provide answers to common questions that have arisen regarding: a) the settings in which clinicians are likely to encounter a person meeting criteria for PGD; b) who typically initiates help-seeking and the receptivity of those with PGD to treatment from mental health professionals; c) how to distinguish PGD from typical grief as well as from major depressive disorder (MDD) and post-traumatic stress disorder (PTSD) secondary to bereavement; d) implications of diagnostic criteria for treatment; and e) how to apply criteria to ensure their cross-cultural sensitivity and validity.
Where might clinicians encounter someone who might be diagnosed with PGD? Although the age of the mourner has proven inversely associated with PGD risk, older adults are more likely to experience the death of a spouse or partner – a kinship relationship to the deceased person posing elevated PGD risk1. Therefore, geriatricians serve populations at high risk for PGD. Moreover, due to a high concentration of deaths, nursing homes, assisted living facilities, cancer clinics, hospices and palliative care services, hospitals (particularly intensive care units), war zones, and places where natural or man-made disasters occur, are settings in which clinicians are likely to encounter persons – surviving family and friends – at elevated risk of PGD.
Counter to the claim that those who meet criteria for PGD are uninterested in treatment, our research revealed that 100% of the bereaved respondents who met criteria for PGD indicated that they would be interested in receiving treatment for it2. However, though they might be interested in treatment, few bereaved individuals with PGD actually seek help3. In a study of bereaved caregivers of patients who died of cancer, we found that, despite 71% of caregivers with PGD reporting increased suicidality, only 43% reported accessing mental health services following the patient's death – a rate significantly below those for bereaved study participants diagnosed with MDD or PTSD3.
Anecdotally, our Cornell Center for Research on End-of-Life Care is frequently contacted by concerned family members seeking treatment for someone whom they believe has PGD. These people typically describe a situation in which their bereaved family member has struggled with grief for many years, been diagnosed with MDD or PTSD, and received treatment for those disorders to no avail. Such experiences are consistent with results which prompted our initial interest in grief – findings from a randomized controlled trial demonstrating that an antidepressant (i.e., nortriptyline) alone and together with psychotherapy addressing role transitions (i.e., interpersonal psychotherapy), while effective for symptoms of late-life bereavement-related depression, did not prove effective for the resolution of grief symptoms4. These findings highlight the need to distinguish PGD from MDD among mourners, and to identify effective treatments for the reduction of symptoms of distressing and disabling grief. Currently, many psychotherapeutic interventions, particularly cognitive behavioral therapies (CBTs)5, have proven efficacious for reducing PGD symptoms.
How can a clinician determine whether a bereaved person's grief response is ordinary or pathological? Diagnostic criteria for PGD found in the ICD-11 or DSM-5-TR require responses that, while seemingly normal, at severe levels and after six or twelve months from the loss (depending on whether ICD-11 or DSM-5-TR criteria are applied), identify mourners at risk of enduring distress and dysfunction. Missing the deceased person and loss of interest in socializing and concentration at work are not abnormal in the initial months following a significant interpersonal loss. Beyond the first anniversary of the death, however, it is surprisingly rare (4-15%6) for bereaved individuals to yearn intensely for the deceased person throughout the day (a preoccupation with thoughts of the deceased making it difficult to focus and engage in usual activities); feel disturbingly detached from others; be agonizingly alone; and lack a sense of meaning, purpose and identity without the deceased person. Individuals who survive a significant other's death from natural causes who exhibit these thoughts and feelings beyond the first anniversary of the death should be evaluated for PGD.
Differences between PGD and MDD focus on the distinction between the deceased person-specific trigger in PGD versus a generalized sense of sadness and pessimism about present and future outcomes in MDD. Yearning for the deceased person is specific to PGD and is not present in MDD (nor PTSD). In PTSD, avoidance is focused on fear of a life-threatening event either to oneself or a significant other and helplessness to prevent harm. In PGD, avoidance is focused on disbelief and lack of emotional and cognitive acceptance of the fact that the loved one has died.
Because the core symptom in PGD is yearning, there are similarities with diagnostic criteria for addictive disorders. For example, PGD symptoms of yearning, anger, and protest of separation from the source of reward resemble the craving and withdrawal symptoms of substance use disorder. These similarities suggest that persons at risk of PGD are those for whom the deceased person was a primary source of love, support, security, identity and validation; that is, a source of psychological reward. They also suggest that interventions – both psychosocial and pharmacological – which blunt reward derived from the deceased person (e.g., naltrexone) might reduce yearning and promote an openness to interacting with living others who might fill social voids, thereby reducing symptoms of PGD and promoting bereavement adjustment more broadly7.
Lastly, while we consider grief a universal human (but not uniquely human, given evidence of its presence in other mammalian species – e.g., elephants, monkeys, voles) response to separation from a significant other, we also acknowledge important cultural influences on the form that grief responses take. What may be considered normal or expected in one culture (e.g., prohibitions on dating or dress) may be regarded as abnormal in another. Linguistic differences may affect the ability to assess symptoms (e.g., if a language has no words or imperfect synonyms for the PGD criteria). The ICD-11 and DSM-5-TR note a “cultural caveat” whereby judgments about normal versus pathological grief reactions are considered within the mourner's cultural context8.
The Grief and Bereavement Cultural interview9 has been developed to assist clinicians in factoring in the role of culture in making a PGD diagnosis. Statistical techniques such as item response theory can be used to determine which items provide the most unbiased information with respect to an underlying grief “attribute” within a specific culture or language. Both clinical and data analytic techniques should be employed to ensure cross-cultural reliability and precision in the application of the PGD criteria.
In conclusion, PGD is a new mental disorder that clinicians may not know how to detect, diagnose or treat. We have briefly addressed some of the most common questions asked by clinicians about assessing PGD, and offered guidelines for intervening to ensure consistency with current best practices in bereavement care.
