Prolonged grief disorder

Prolonged grief disorder
SpecialtyPsychology

Prolonged grief disorder (PGD) is a disorder consisting of a distinct set of symptoms following the death of a loved one. PGD is experienced by about 10 percent[1] of bereaved survivors, though rates vary depending on the circumstances. The affected person is incapacitated by grief, so focused on the loss that it is difficult to care about much else. He or she often ruminates about the death and longs for a reunion with the departed, while feeling unsure of his or her own identity and place in the world. The victim will develop a flat and dull outlook on life, feeling that the future holds no prospect of joy, satisfaction or pleasure. The bereaved person who suffers from PGD feels devalued and in constant turmoil, with an inability to adjust to (if not a frank protest against) life without the beloved.

PGD is defined by its symptoms, duration and intensity. The symptoms are intense yearning for the person, identity confusion, difficulty accepting the loss, bitterness, emotional numbness, inability to trust others and the feeling of being trapped in grief. These are present every day, causing significant distress and functional impairment, and remaining intense, frequent, and disabling for six months or more after the death.[2]

Presentation

PGD symptoms have been associated with:

Risk factors

Known risk factors include one-time and ongoing events and condition:

These risk factors and clinical correlates have been shown to relate to PGD symptoms and not symptoms of major depressive disorder (MDD), posttraumatic stress disorder (PTSD), and generalized anxiety disorder (GAD).[13][25]

Bereavement due to suicide and PGD

Losing a loved one to suicide may disrupt and sometimes completely halt the natural grieving process, contributing to a greater likelihood of developing pathological grief responses.[27] When an individual loses a loved one to suicide, distress tends to center around yearning, separation, and inability to acknowledge the loss.[27] Evidence suggests that even after adjusting for variables such as time since death and relationship to deceased, losing a loved one to suicide predicts worse prognoses compared to other types of loss such as accidental death, homicide, war, and death from natural causes.[28]

Noteworthy variables

Relationship to the deceased accounts for a large amount of variance in symptoms. Spouses, parents, and children of deceased display highest severity on average, followed by siblings, in-laws, and friends. Subjective closeness to deceased has also been found to be an important predictor of pathologic grief responses.[29] Although there has been a common belief that bereavement symptoms are heightened if the bereaved's relationship to the deceased is ambivalent at the time of death, the majority of evidence suggests that the opposite may in fact be the case (i.e., bereavement symptoms are more severe if the relationship to the deceased is harmonious).

Experiences of the bereaved

Bereaved persons often feel a consuming need to understand why their loved one decided to die by suicide, particularly if a message was not left behind by the deceased.[30] People may struggle to understand why this person eventually decided to end their life and find themselves fixating on questions that cannot adequately be answered. For example, bereaved individuals are often unaware of the nature of the deceased’s suffering and inner turmoil, leaving them looking back in retrospect on previous events to try and determine whether they may have “missed the signs.” Furthermore, bereaved persons may have been purposefully excluded from the aspects of the deceased’s life that lead to their suicide completion. These lingering questions and confusions are understood to impede the normal grieving processes of both acknowledgment and acceptance.[27]

Often, bereaved individuals feel responsible for the death of their loved one. This may lead to persistent experiences of guilt revolving around a sense of what the individual may have been able to do to prevent the death. This is particularly relevant if the bereaved individual is a parent who has lost a child. In this case, parents often feel that they are at fault for not fulfilling their duty as a parent to protect their child from harm.[27]

Stigma

Historically, there have been systemic consequences for family members that survive a loved one's suicide. During the Middle Ages families were often excommunicated and taxed by the Church if a family member had died by suicide. This often lead to families losing their landholdings, inevitably being forced to live in poverty or emigrate to another region.[31]

In modern day, structural stigma is much more rare. However, some insurance policies do prevent benefits from being accessed if an individual has died by suicide within a certain timeframe of taking out the policy.[31]

Suggestions for treatment

A combination of relational and cognitive-behavioral interventions have shown evidence for efficacy when treating individuals who have lost loved ones to suicide.[30] This includes interventions that target the client's sense of self and lingering emotional attachment to the deceased, as well as any experiences of intrusion, anxiety, and/or avoidance.[30] It is of particular importance to target the bereaved's acceptance of irreversibility of the death, as this is a prerequisite for acceptance and acknowledgement of the loss.[30] Exposure interventions can be helpful, but the current evidence is mixed as they can sometimes intensify symptoms. It is also important to make note of the bereaved's relational status to the deceased as an indication of potential symptom severity. Group therapy has mixed evidence, and has been shown to be less helpful when compared to other treatment modalities.[30]

Diagnosis

Factor analytic studies have determined that the symptoms of PGD form a unitary construct that is separate from symptoms of bereavement-related depression and anxiety.[6][7][32][33][3][34][35][36][37][38] Extensive research has been conducted to identify and isolate the symptoms that constitute PGD and distinguish it from diagnostic "nearest neighbors" such as Major Depressive Disorder or Posttraumatic Stress Disorder.[6][7][32][33][3][34][36][37][38] These analyses integrate clinical insights with rigorous empirical analysis to determine the set of symptoms that best indicate which bereaved survivors will be at risk of long term dysfunction and distress (e.g., suicidality, excessive alcohol use, disability days, sleep impairment, quality of life impairment, high blood pressure, hospitalizations for serious medical events such as heart attacks).[6][7][4][3][8][9][10][39][11]

Prigerson et al. proposed diagnostic criteria for PGD for inclusion in the DSM-5 and ICD-11.[6]

Criteria for PGD proposed for DSM-V and ICD-11

Description

Grief is a normal response to bereavement. Researchers have found that 10–20%[1] of people experience a prolonged response to bereavement that impacts functioning and has adverse long-term effects on health.[6][40]

Prolonged grief is considered when an individual's ability to function and level of distress over the loss is extreme and persistent. People with PGD feel "stuck" in their grief, experience a chronic aching and yearning for the dear departed, feel that they are not the same person anymore (e.g., unsure of their identity, loss of a sense of self and self-worth), become emotionally disconnected from others, and lack the desire to "move on" (sometimes feeling that doing so would be betraying the person who is now deceased).[6][7][32][33][4][3][34]

Treatment

The unique symptom profile and course of PGD requires targeted treatment. Randomized control trials (RCT) have proven tricyclic antidepressants alone or together with interpersonal psychotherapy ineffective in reducing PGD symptoms, while psychotherapy designed specifically for PGD has been proven to be beneficial.[41][42][43][44][45] Preliminary results of an online, self-management intervention to prevent PGD in recently bereaved individuals, in a study called "HEAL" (Healthy Experiences After Loss), are very promising.[46] A larger randomized controlled trial is being planned.

Incidence

Out of the people surveyed who have experienced a loss, 10–20% display a prolonged and severe grief response.[6][40][47] Global incidence needs further investigation.

History

The DSM-IV and ICD-10 do not distinguish between normal and prolonged grief.[48][49] Based on numerous findings of maladaptive effects of prolonged grief, diagnostic criteria for PGD have been proposed for inclusion in the DSM-5 and ICD-11.[6][50] In 2018, the WHO included PGD in the ICD-11[51] and it is currently the only official diagnosis for PGD.[52] The APA is investigating adding PGD in the DSM-5-TR (text revision).[53]

The proposed diagnostic criteria were the result of statistical analysis of a set of criteria agreed upon by a panel of experts.[6][34] The analyses produced criteria that were the most accurate markers of bereaved individuals suffering from painful, persistent, destructive PGD.[6] The criteria for PGD have been validated and dozens of studies both internationally and domestically are being conducted, and published, that validate the PGD criteria in other cultures, kinship relationships to the deceased and causes of death (e.g., earthquakes, tsunami, war, genocide, fires, bombings, palliative and acute care settings).[54][55]

Recognizing prolonged grief as a disorder would allow it to be better understood, detected, studied and treated. Insurance companies would also be more likely reimburse its care. On the other hand, inclusion of PGD in the DSM-5 and ICD-11 may be misunderstood as the medicalization of grief, reducing its dignity, turning love into pathology and implying that survivors should quickly forget and "get over" the loss. Bereaved persons may be insulted by having their distress labeled as a mental disorder. While this stigmatization would not be the intent, it might be an unintended consequence. In spite of this concern, studies have shown that nearly all bereaved individuals who met the criteria for PGD were receptive to treatment and their families relieved to know they had a recognizable syndrome.[56] In addition, a recent study found that labeling PGD symptoms with a grief-specific diagnosis does not produce additional public stigma beyond the stigma of these severe grief reactions alone.[57]

Traumatic grief (TG) was the first term that identified a complex syndrome in which an individual experiences a unique distress resulting from the simultaneous occurrence of psychological trauma and the loss of a loved one. It was understood to be closely related to, but distinguished from, normal grief and post traumatic stress disorder. The central components included yearning, separation distress, and inability to acknowledge the loss.[27]

Difference from normal grief

Although extremely painful, grief is the normal process of accommodating to a new life without the deceased loved one. Most bereaved survivors manage to get through the worst of their grief and continue to function and find meaning in life. Normal grief differs from PGD in that it is not as intense, persistent, disabling and life-altering and is not experienced as a severe threat to the survivor's identity, sense of self-worth, feeling of security, safety or hopes for future happiness. Although normal grief remains with the bereaved person far into the future, its ability to disrupt the survivor's life dissipates with time.[2]

In traumatic grief, the normal grieving process is theorized to be hindered by the avoidance of painful memories and events that cannot be separated from the loss of the loved one.[58] During the normal grieving process an individual is generally capable of acknowledging the loss of their loved one, whereas in TG the individual may be completely unable to do so. In normal grief the bereaved is still able to maintain and invest in emotionally valuable relationships, but in TG an individual may feel that their trust in others and sense of self was destabilized by the loss. The central role of distress results from a yearning and searching for the loved one.[59] Traumatic grief is also separate from symptom clusters of bereavement related depression and bereavement related anxiety.[58]

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