Prolonged grief disorder (PGD), also known as complicated grief (CG),
traumatic grief (TG)
and persistent complex bereavement disorder (PCBD) in the DSM-5,
is a
mental disorder
A mental disorder, also referred to as a mental illness or psychiatric disorder, is a behavioral or mental pattern that causes significant distress or impairment of personal functioning. Such features may be persistent, relapsing and remitti ...
consisting of a distinct set of symptoms following the death of a family member or close friend (i.e.
bereavement
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogniti ...
). People with PGD are preoccupied by grief and feelings of loss to the point of
clinically significant In medicine and psychology, clinical significance is the practical importance of a treatment effect—whether it has a real genuine, palpable, noticeable effect on daily life.
Types of significance Statistical significance
Statistical significance ...
distress and impairment, which can manifest in a variety of symptoms including
depression,
emotional pain
Psychological pain, mental pain, or emotional pain is an unpleasant feeling (a suffering) of a psychological, non-physical origin. A pioneer in the field of suicidology, Edwin S. Shneidman, described it as "how much you hurt as a human being. It ...
,
emotional numbness,
loneliness
Loneliness is an unpleasant emotional response to perceived isolation. Loneliness is also described as social paina psychological mechanism which motivates individuals to seek social connections. It is often associated with a perceived lack ...
,
identity disturbance
An identity disturbance is a deficiency or inability to maintain Multiplicity (psychology), one or more major components of identity. These components include a sense of continuity over time; emotional commitment to representations of self, role re ...
and difficulty in managing
interpersonal relationship
The concept of interpersonal relationship involves social associations, connections, or affiliations between two or more people. Interpersonal relationships vary in their degree of intimacy or self-disclosure, but also in their duration, in t ...
s. Difficulty accepting the loss is also common, which can present as rumination about the death, a strong desire for reunion with the departed, or disbelief that the death occurred. PGD is estimated to be experienced by about 10 percent of bereaved survivors, although rates vary substantially depending on populations sampled and definitions used.
In March 2022, PGD was added as a mental disorder in the ''
Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR)'' with diagnostic code F43.8. PGD is also in the
eleventh revision of the ''International Classification of Diseases (ICD-11)'' under code 6B42. To meet diagnosis, symptoms must occur frequently (usually at least daily) and be present for at least 6–12 months.
Symptoms
PGD behavioral symptoms include:
* Elevated rates of
suicidal ideation
Suicidal ideation, or suicidal thoughts, means having thoughts, ideas, or ruminations about the possibility of ending one's own life.World Health Organization, ''ICD-11 for Mortality and Morbidity Statistics'', ver. 09/2020MB26.A Suicidal ideatio ...
and attempts
* Functional impairment
* High treatment-seeking behaviors
* Adverse
health behaviors
PGD is also a risk factor a variety of somatic symptoms
possibly including:
* Reduced quality of life in adults
and in children
*
Cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
*
Immunological dysfunction
*
Hypertension
Hypertension (HTN or HT), also known as high blood pressure (HBP), is a long-term medical condition in which the blood pressure in the arteries is persistently elevated. High blood pressure usually does not cause symptoms. Long-term high bl ...
*
Cardiac events
The individual's relationship to the deceased accounts for a large amount of variance in symptoms. Spouses, parents, and children of deceased tend to display highest severities, followed by siblings, in-laws, and friends. Subjective closeness to deceased has also been found to be an important predictor of pathologic grief responses. Bereaved persons often feel a need to understand why their loved one died by suicide, particularly if a message was not left behind by the deceased.
Grief
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogni ...
is a common response to
bereavement
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogniti ...
, occurring in a variety of severities and durations, however only a minority of cases of grief meet the severity and duration criteria to merit diagnosis of PGD; it is considered when an individual's ability to function and level of distress over the loss is extreme and persistent. People with PGD can experience a chronic aching and yearning for the dear departed, feel that they are not the same person anymore (
identity disturbance
An identity disturbance is a deficiency or inability to maintain Multiplicity (psychology), one or more major components of identity. These components include a sense of continuity over time; emotional commitment to representations of self, role re ...
), become emotionally disconnected from others, or lack the desire to "move on" (in some cases feeling that doing so would be betraying the person who is now deceased).
Although normal grief remains with the bereaved person far into the future, its ability to disrupt the survivor's life is believed to dissipate with time.
Since the 1990s, studies have demonstrated the validity of distinguishing PGD from mental disorders with similar symptom clusters, specifically
major depressive disorder
Major depressive disorder (MDD), also known as clinical depression, is a mental disorder characterized by at least two weeks of pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Introdu ...
and
post-traumatic stress disorder
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
.
Validity has also been demonstrated for the DSM-5-TR criteria.
Diagnosis
DSM-5-TR
In the
DSM-5-TR
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
, prolonged grief disorder is a classified as a "trauma and stressor-related disorder".
Along with
bereavement
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogniti ...
of the individual occurring at least one year ago (or six months in children and adolescents), there must be evidence of one of two "grief responses" occurring at least daily for the past month:
* Intense yearning/longing for the deceased person.
* Preoccupation with thoughts or memories of the deceased person (in children and adolescents, preoccupation may focus on the circumstances of the death).
Additionally, the individual must have at least three of the following symptoms occurring at least daily for the past month:
* Identity disruption (e.g., feeling as though part of oneself has died) since the death
* Marked sense of disbelief about the death
* Avoidance of reminders that the person is dead (in children and adolescents, may be characterized by efforts to avoid reminders)
* Intense emotional pain (e.g., anger, bitterness, sorrow) related to the death
* Difficulty reintegrating into one's relationships and activities after the death (e.g., problems engaging with friends, pursuing interests, or planning for the future)
* Emotional numbness (absence or marked reduction of emotional experience) as a result of the death
* Feeling that life is meaningless as a result of the death
* Intense loneliness as a result of the death
The duration and severity of the distress and impairment in PGD must be
clinically significant In medicine and psychology, clinical significance is the practical importance of a treatment effect—whether it has a real genuine, palpable, noticeable effect on daily life.
Types of significance Statistical significance
Statistical significance ...
, and not better explainable by social, cultural or religious norms, or another mental disorder. PGD can be distinguished from
depressive disorder
A mood disorder, also known as an affective disorder, is any of a group of conditions of mental and behavioral disorder where a disturbance in the person's mood is the main underlying feature. The classification is in the ''Diagnostic and Stat ...
s with distress appearing specifically about the bereaved as opposed to a general low mood. According to
Holly Prigerson
''Ilex'' (), or holly, is a genus of over 570 species of flowering plants in the family Aquifoliaceae, and the only living genus in that family. ''Ilex'' has the most species of any woody dioecious angiosperm genus. The species are evergreen o ...
, an editor on the ''trauma and stressor-related disorder'' section of the DSM-5-TR, "intense, persistent yearning for the deceased person is specifically a characteristic symptom of PG
rolonged grief but is not a symptom of MDD (or any other DSM disorder)".
[Frances, A. (2012, February 28). When Good Grief Goes Bad. The Huffington Post. Retrieved from http://www.huffingtonpost.com/allen-frances/grief-depression_b_1301050.html]
ICD-11
In the
ICD-11
The ICD-11 is the eleventh revision of the International Classification of Diseases (ICD). It replaces the ICD-10 as the global standard for recording health information and causes of death. The ICD is developed and annually updated by the World He ...
, the symptoms required for diagnosis are:
* A history of bereavement following the death of a partner, parent, child, or other person close to the bereaved.
* A persistent and pervasive grief response characterized by longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain. This may be manifested by experiences such as sadness, guilt, anger, denial, blame, difficulty accepting the death, feeling one has lost a part of one's self, an inability to experience positive mood, emotional numbness, and difficulty in engaging with social or other activities.
* The pervasive grief response has persisted for an atypically long period of time following the loss, markedly exceeding expected social, cultural or religious norms for the individual's culture and context. Grief responses lasting for less than 6 months, and for longer periods in some cultural contexts, should not be regarded as meeting this requirement.
* The disturbance results in significant impairment in personal, family, social, educational, occupational or other important areas of functioning. If functioning is maintained, it is only through significant additional effort.
Compared to the DSM-5-TR diagnostic criteria, the ICD-11 requires grief responses to be present for only six months in adults as compared to one year in the DSM-5-TR.
Diagnostic criteria for PGD for inclusion in the DSM-5 and ICD-11 were proposed and revised as early as 2009.
However, the DSM-5 did not include PGD, only later being included in the DSM-5-TR.
Assessment tools
Multiple assessment tools specifically for grief related to bereavement have been developed. The first such assessment tool was the ''
Inventory of Complicated Grief (ICG)'' in 1995.
the ICG remains widely used.
According to a 2020 systematic review, there were eleven assessment tools at the time, three of which are designed for clinical interviews.
The ''
Traumatic Grief Inventory Self-Report
Trauma most often refers to:
*Major trauma, in physical medicine, severe physical injury caused by an external source
*Psychological trauma, a type of damage to the psyche that occurs as a result of a severely distressing event
*Traumatic inju ...
'' was the only assessment tool found to have empirical evidence supporting use as a diagnostic tool.
Later evidence suggested the ICG also remains an effective clinical assessment tool.
Causes
No specific causes guarantee onset of PGD. Known risk factors include one-time incidents along with chronic conditions and neurological abnormalities. One-time incidents include:
*The death was due to a violent method, such as homicide or suicide
* The death occurred in a hospital
*
Miscarriage
Miscarriage, also known in medical terms as a spontaneous abortion and pregnancy loss, is the death of an embryo or fetus before it is able to survive independently. Miscarriage before 6 weeks of gestation is defined by ESHRE as biochemical lo ...
* Lack of preparation for death, or high levels of anticipatory grief
Long-term predictors include:
* Childhood
separation anxiety
Separation anxiety disorder (SAD) is an anxiety disorder in which an individual experiences excessive anxiety regarding separation from home and/or from people to whom the individual has a strong emotional attachment (e.g., a parent, caregiver ...
* Controlling parents
* Parental abuse or death (other than that of the bereaved death)
* Close kinship relationship to the deceased (e.g., parents)
*Insecure
attachment styles
Attachment theory is a psychological, evolutionary and ethological theory concerning relationships between humans. The most important tenet is that young children need to develop a relationship with at least one primary caregiver for normal ...
* Emotional dependency
*Emotional closeness to the deceased before death
Two neurological abnormalities are also suspected to correlate with PGD:
* No shortened
rapid eye movement (REM) latency
* Activation of the
nucleus accumbens
The nucleus accumbens (NAc or NAcc; also known as the accumbens nucleus, or formerly as the ''nucleus accumbens septi'', Latin for "nucleus adjacent to the septum") is a region in the basal forebrain rostral to the preoptic area of the hypotha ...
These risk factors and clinical correlates have been largely shown to relate to PGD symptoms and not symptoms of
major depressive disorder
Major depressive disorder (MDD), also known as clinical depression, is a mental disorder characterized by at least two weeks of pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Introdu ...
,
posttraumatic stress disorder
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
and
generalized anxiety disorder
Generalized anxiety disorder (GAD) is a mental and behavioral disorder, specifically an anxiety disorder characterized by excessive, uncontrollable and often irrational worry about events or activities. Worry often interferes with daily function ...
.
Management
Randomized control trial
A randomized controlled trial (or randomized control trial; RCT) is a form of scientific experiment used to control factors not under direct experimental control. Examples of RCTs are clinical trials that compare the effects of drugs, surgical te ...
s have proven
tricyclic antidepressants
Tricyclic antidepressants (TCAs) are a class of medications that are used primarily as antidepressants, which is important for the management of depression. They are second-line drugs next to SSRIs. TCAs were discovered in the early 1950s and wer ...
alone or together with
interpersonal psychotherapy Interpersonal psychotherapy (IPT) is a brief, attachment-focused psychotherapy that centers on resolving interpersonal problems and symptomatic recovery. It is an empirically supported treatment (EST) that follows a highly structured and time-limite ...
ineffective in reducing PGD symptoms, and psychotherapy designed specifically for PGD has been proven to be beneficial.
A combination of relational and cognitive-behavioral interventions have shown evidence for efficacy when treating individuals who have lost loved ones to suicide.
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. Acceptance of irreversibility of the death is considered a prerequisite for acceptance and acknowledgement of the loss.
Exposure therapy
Exposure therapy is a technique in behavior therapy to treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger (desensitization). Doing so is thou ...
has mixed evidence and in some cases intensifies symptoms, suggesting effectiveness does not vary significantly compared to non-exposure therapies especially with comorbid PTSD.
Group therapy
Group psychotherapy or group therapy is a form of psychotherapy in which one or more therapists treat a small group of clients together as a group. The term can legitimately refer to any form of psychotherapy when delivered in a group format, i ...
has mixed evidence, and has been shown to be less helpful when compared to other treatments.
Epidemiology
According to a 2017 meta-analysis, prevalence rages are estimated to be 9.8%, although later evidence in 2020 has suggested higher prevalence estimates, as high as 49% of bereaved individuals.
PGD is also more prevalent when the death is by a violent method such as homicide or suicide, with an estimated 70% of those with PGD in the study having been exposed to bereavement by a violent method.
Conversely, PGD is less common in cases where the bereaved death was due to natural disasters.
PGD has higher prevalence in women.
There is a high comorbidity rate with
somatic symptom disorder
A somatic symptom disorder, formerly known as a somatoform disorder,(2013) dsm5.org. Retrieved April 8, 2014. is any mental disorder that manifests as physical symptoms that suggest illness or injury, but cannot be explained fully by a general ...
s,
depression, anxiety and
post-traumatic stress disorder
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
, with PGS being observed as
heterogenous
Homogeneity and heterogeneity are concepts often used in the sciences and statistics relating to the uniformity of a substance or organism. A material or image that is homogeneous is uniform in composition or character (i.e. color, shape, siz ...
.
There exists conflicting evidence on whether PGD is more or less common eastern countries compared to western countries.
History
The DSM-IV and ICD-10 do not distinguish between normal and prolonged grief.
[National Center for Health Statistics (2009) International Classification of Diseases, Tenth Revision (ICD-10).; Available at]
CDC
Accessed 12 July 2012. 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.
In 2018, the WHO included PGD in the ICD-11,
and in March 2022 the
American Psychiatric Association
The American Psychiatric Association (APA) is the main professional organization of psychiatrists and trainee psychiatrists in the United States, and the largest psychiatric organization in the world. It has more than 37,000 members are involve ...
added PGD in the
DSM-5-TR
The ''Diagnostic and Statistical Manual of Mental Disorders'' (DSM; latest edition: DSM-5-TR, published in March 2022) is a publication by the American Psychiatric Association (APA) for the classification of mental disorders using a common langua ...
.
The proposed
diagnostic criteria
Medical diagnosis (abbreviated Dx, Dx, or Ds) is the process of determining which disease or condition explains a person's symptoms and signs. It is most often referred to as diagnosis with the medical context being implicit. The information req ...
were the result of statistical analysis of a set of criteria agreed upon by a panel of experts.
The analyses produced criteria that were the most accurate markers of bereaved individuals with painful, persistent, destructive PGD.
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).
Traumatic grief (TG) or complicated grief was a term initially used to identify 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 originally included yearning, separation distress, and inability to acknowledge the loss.
Controversy
Although evidence suggesting the validity of PGD has existed since 1995,
its inclusion into the DSM-5-TR and ICD-11 was slow, including many rejections of earlier proposals for inclusion as a diagnosis. Part of the rationale for this rejection was a concern that "
..introducing a grief diagnosis would pathologize normal grief reactions and potentially lead to over-prescription of psychotropic medication for the bereaved."
Recognizing prolonged grief as a disorder was argued to allow it to be better understood, detected, studied and treated. Insurance companies would also be more likely reimburse its care. However, inclusion of PGD in the DSM-5 and ICD-11 was thought at risk of being misunderstood as
medicalization
Medicalization is the process by which human conditions and problems come to be defined and treated as medical conditions, and thus become the subject of medical study, diagnosis, prevention, or treatment. Medicalization can be driven by new evid ...
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
stigmatization
Social stigma is the disapproval of, or discrimination against, an individual or group based on perceived characteristics that serve to distinguish them from other members of a society. Social stigmas are commonly related to culture, gender, rac ...
would not be the intent, it might be an unintended consequence. In spite of this concern, studies have shown good accuracy for the ICD-11 and DSM-5-TR definitions, and 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.
In addition, a 2020 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.
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 led to families losing their landholdings, inevitably being forced to live in poverty or emigrate to another region.
Some insurance policies prevent benefits from being accessed if an individual has died by suicide within a certain timeframe of taking out the policy.
References
{{reflist, 30em
Grief
Types of mental disorders