Physical Address
304 North Cardinal St.
Dorchester Center, MA 02124
What Is Prolonged Grief Disorder and How Can Its Likelihood Be Reduced?
Introduction and Scope of the Problem
Grief is a strong and sometimes overwhelming emotion. Grief is the normal reaction to loss and a universal human experience—individual and personal—creating a unique combination of emotional, psychosocial, physical, spiritual, and existential responses. Grief is not a disorder; however, grieving symptoms can become chronically disabling and distressing for a minority of people. Multiple terms have been used to refer to this type of difficult and lasting grief, including prolonged , abnormal , pathological , atypical , neurotic , unresolved , chronic , delayed , exaggerated , traumatic , and complicated . A form of disabling and distressing grief that does not resolve or subside and causes significant functional impairment is defined as complicated grief (CG). Complicated grief has been defined as a persistent form of intense grief in which maladaptive thoughts and dysfunctional behaviors are present along with continued yearning, longing, and sadness and/or preoccupation with thoughts and memories of the person who died. Grief continues to dominate life, and the future seems bleak and empty for that individual. Irrational thoughts that the deceased person might reappear are common and the bereaved person may feel lost and alone. Bereavement is defined as the time period following the loss of a loved one to death.
Prolonged grief disorder (PGD) has been defined by the WHO in the International Classification of Diseases-11 (ICD-11) as a disturbance following the death of a partner, parent, child, or another person close to the bereaved. There is a persistent and pervasive grief response characterized by longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain (e.g., sadness, guilt, anger, denial, blame, difficulty accepting the death, feeling one has lost a part of oneself, an inability to experience positive mood, emotional numbness, and/or difficulty in engaging in social or other activities). Diagnostic criteria for PGD require a grief response that lasts for more than 6 months and clearly exceeds expected social, cultural, or religious norms. Persistent Complex Bereavement Disorder has been defined by the Diagnostic and Statistical Manual, 5th Edition (DSM-5) as persistent yearning or longing, intense sorrow and emotional pain, and preoccupation with the dead person and circumstances of the death that last at least 12 months after the death. PGD has distinctive neural dysfunctions and cognitive patterns of a disorder and meets the criteria for establishing a mental disorder because it has (A) distinct risk factors (e.g., emotional dependence on the deceased), (B) adverse outcomes (e.g., elevated risk of increases in suicidality over and above symptoms of depression and anxiety), and (C) responsiveness to treatment.
Estimates suggest that 10% to 12% of people experience grief that does not resolve naturally and persists for an indefinite period with varying degrees of incapacitation. Prevalence rates for this type of grief disorder have been found to vary by country and type of loss. Prolonged grief has been estimated to range from 4.2% in Switzerland to 6.7% in Germany; a 2017 meta-analysis of 14 studies revealed a pooled prevalence of PGD of 9.8% among people who experienced a nonviolent and nontraumatic loss. People who have been bereaved by a violent death are likely to have higher rates of disordered grief that ranges from 10% to 15% to as high as 49%. Disabling and distressing grief was reported by 14% to 17% of people who experienced a disaster.
The Evolution of Prolonged Grief Disorder
Disabling and distressing grief has been redefined through the years and has been the subject of disagreement and controversy. Grief responses were thought to overlap with major depressive disorder (MDD) and posttraumatic stress disorder (PTSD). The ICD-9 first mentioned grief and included complicated bereavement as an adjustment disorder. ICD-10 included grief as one of the symptoms of an adjustment disorder, F43.0. ICD-11 provides a formal code for PGD (6B42) and now differentiates among MDD, PTSD, and PGD.
In 1980 the DSM-III excluded major depressive episodes (MDEs) that were preceded by the death of a loved one. This exclusion considered depressive symptoms following bereavement as a normal reaction with expected emotions. However, those same symptoms represent dysfunction in the absence of bereavement. The DSM-IIIR recognized uncomplicated bereavement as a “V” category—or “Other Conditions that May be a Focus of Clinical Attention”—and an exclusion criterion for MDEs, noting that prolonged duration indicated that bereavement had become complicated by MDD.
In 1994 the DSM-IV advised clinicians to refrain from diagnosing MDD in individuals within the first 2 months following the death of a loved one (known as the bereavement exclusion [BE]). The bereavement exclusion was removed in DSM-5. Removing this helped prevent MDD from being overlooked and facilitates the possibility of appropriate treatment. Recognizing MDD (and suicidality) in the context of recent bereavement is critically important and requires careful discernment. Removal of the bereavement exclusion was highly controversial, and critics argued that its removal medicalizes ordinary grief and encourages the overprescription of antidepressants.
The DSM-5 (published in 2013) workgroup considered two main proposals for diagnostic criteria. One proposal identified PGD and a second proposed CG. Criteria for PGD and CG have many symptoms in common but they are not identical. Moreover, while distinct differences between PGD and CG exist, the terms are often used interchangeably.
General agreement that available evidence justifies the inclusion of a grief disorder in the ICD-11 and DSM-5 has been established. Despite agreement that prolonged, intense, disabling grief constitutes a psychological disorder, there remains a lack of agreement on the name of the disorder and on the criteria that clinicians should use to assess it. PGD, CG, and persistent complex bereavement disorder (PCBD) show commonalities, but the question of which criteria are most clinically useful remains controversial ( Table 66.1 ).
Table 66.1
Comparison of the Criteria for Prolonged Grief Disorder and Persistent Complex Bereavement Disorder
Table is adapted from Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, Goodkin K, et al. (2013): Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med 10(12): https://doi.org/10.1371/annotation/a1d91e0d-981f-4674-926c-0fbd2463b5ea .
| Prolonged Grief Disorder (ICD-11) | Persistent Complex Bereavement Disorder (DSM-V) | ||
|---|---|---|---|
| A | At least one of the following 1. A persistent and pervasive longing for the deceased OR2. A persistent and pervasive preoccupation with the deceased | A | The individual experienced the death of someone with whom they had a close relationship |
| B | Accompanied by intense emotional pain 1. Sadness, guilt, anger, denial, blame 2. Difficulty accepting the death 3. Feeling one has lost part of oneself |
B | Since the death, at least one of the following symptoms is experienced on more days than not and to a clinically significant degree, and has persisted at least 12 months after the death: |
| 4. An inability to experience a positive mood | 1. Persistent yearning/longing for the deceased | ||
| 5. Emotional numbness | 2. Intense sorrow and emotional pain | ||
| 6. Difficulty engaging in social or other activities | 3. Preoccupation with the deceased | ||
| 4. Preoccupation with the circumstances of the death | |||
| C | Time and impairment criteria | C | Six of the following symptoms on more days than not for at least 12 months after the death |
| 1. Persisted for an abnormally long period of time (>6 months) following the loss | Reactive emotional distress1. Marked difficulty accepting the death | ||
| 2. Clearly exceeds expected social, cultural, and/or religious norms for the individual’s culture and context | 2. Experiencing disbelief or emotional numbness over the loss3. Difficulty with positive reminiscing about the deceased | ||
| 2. Grief reactions that have persisted for longer periods that are within a normative period of grieving given the person’s cultural and religious context are viewed as normal bereavement responses and are not assigned a diagnosis. | 4. Bitterness or anger related to the loss5. Maladaptive appraisals about oneself in relation to the deceased or the death (e.g., self-blame) | ||
| 3. The disturbance causes significant impairment in personal, family, social, educational, occupational, or other important areas of functioning | 6. Excessive avoidance of reminders of the loss (e.g., avoidance of individuals, places, or situations associated with the deceased) | ||
| Social/identity disruption | |||
| 7. A desire to die to be with the deceased | |||
| 8. Difficulty trusting other individuals since the death | |||
| 9. Feeling alone or detached from other individuals since the death | |||
| 10. Feeling that life is meaningless or empty without the deceased, or belief that one cannot function without the deceased | |||
| 11. Confusion about one’s role in life, or a diminished sense of one’s identity (e.g., feeling that a part of oneself died with the deceased) | |||
| 12. Difficulty or reluctance to pursue interests since the loss or to plan for the future (e.g., friendships, activities) | |||
| D | The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning . | ||
| E | The bereavement reaction is out of proportion to or inconsistent with cultural, religious, or age-appropriate norms . | ||
| Source: ICD-11 | Source: DSM-5 |
Risk Factors for Prolonged Grief Disorder
Certain types of losses are more challenging to adapt to than others. Risk factors associated with developing PGD include sudden and violent losses that do not allow those left behind the chance to prepare either for the loss of their relationship or for roles they may take on such as financial or caregiving duties. Losses that are sudden and violent (including from COVID-19) have also been associated with slower recovery and an increased risk of mental health disorders such as PTSD and depression compared to bereavement from natural deaths. Issues surrounding attachment have been associated with higher risk for PGD, including first-degree relationship to the person who died, separation anxiety in childhood, controlling parents, abuse by or death of parents during childhood, a poorly functioning marriage or insecure attachment style before widowhood, and emotional dependency; a lack of preparation for the death and in-hospital death are also factors. Being female, younger, and more recently bereaved; experiencing the death of a parent/child; and unnatural losses plus maladaptive cognitions and avoidance behaviors have also been associated with PGD.
People with PGD experience serious psychosocial and health problems, including other mental health difficulties such as suicidality and substance use disorder, harmful health behaviors, or physical disorders such as high blood pressure, and elevated rates of cardiovascular disorder. A prolonged state of abnormal grief has been associated with higher rates of suicidal ideation and suicide attempts. Cancer, hypertension, and cardiac events are more likely after several years, and immune disorders and evidence of immune dysfunction are more frequent. Adverse health behaviors are more frequent, and reported functional impairment is greater. Health care services are used to a greater extent and more sick leave is taken.
Considerable evidence indicates the presence of an identifiable syndrome of disturbed and distressed grief across cultures in virtually every area of the globe, and the WHO ICD-11 workgroup has recognized the public health burden of this condition. There is strong international consensus around the need for a diagnostic category for disabling and distressing grief. There have been efforts to improve the global applicability of psychological disorder criteria by including culturally specific features, but little consensus about what symptoms are relevant to all cultures. Killikelly and colleagues introduced the International Prolonged Grief Disorder Scale (IPGDS), which assesses PGD symptoms believed to be relevant to all cultures—core symptoms of disturbed and distressed grief—and provides a method operationalizing global applicability through culturally adapted items. Numerous organizations around the world have created resources for health care professionals to guide both assessment and management of prolonged grief ( Table 66.2 ).
Table 66.2
Selected Websites With Resources for Assessments, Interventions, and Materials About Prolonged Grief
Data from Hauer J, Houtrow AJ. Pain assessment and treatment in children with significant impairment of the central nervous system. Pediatrics . 2017 Jun;139(6):e20171002. https://doi.org/10.1542/peds.2017-1002 .
| Website | Resources Available |
|---|---|
| Gippsland Region Palliative Care Consortium: http://www.grpcc.com.au/ | Palliative care resources: multiple sets of guidelines for providers including the Bereavement Risk Screening and Management Guidelines |
| The Center for Prolonged Grief: https://complicatedgrief.columbia.edu/professionals/complicated-grief-professionals/overview/ |
|
| Weill Cornell Medicine Center for Research on End-of-Life Care: https://endoflife.weill.cornell.edu/ |
|
| WHO Mental Health Gap (mhGAP) program: https://www.mhinnovation.net/resources/mhgap-humanitarian-intervention-guide-mhgap-hig |
|
A classification that is applicable across cultures is difficult to achieve for global use. Indeed, the new ICD-11 criteria take into account social, cultural, or religious norms with reference to the duration criterion. Along with duration, there may also be differences in the symptom content of normal and disabling grief. Descriptions of PGD include caveats about cultural differences in the duration of symptoms and the expression of grief. A diagnosis of PGD cannot be ascertained unless it is clear that the symptoms violate sociocultural norms. The new ICD-11 guidelines including specific references to such norms is a clear step toward increased international applicability.
Race is also a potential risk factor for the development of PGD. The experience of minoritized populations can affect how they grieve and experience loss. Racism, violence, inequitable health care, and financial insecurity that result in early and untimely deaths can contribute to PGD. A secondary analysis with 538 individuals in the United States found rates of PGD were higher for Black bereaved participants as compared to those who were White (21.2% vs 11.6%).
You're Reading a Preview
Become a Clinical Tree membership for Full access and enjoy Unlimited articles
If you are a member. Log in here