Gen Tanaka, MD

Any psychiatric diagnosis has the potential for empowering the clinician to treat the patient’s suffering as well as inspiring the patient to participate in an effective treatment. Alas, diagnosis also has the potential for stigmatization and dehumanization. Whereas diagnoses of personality disorder all too often have been used to stigmatize patients, the rush to eliminate Enduring Personality Change After Catastrophic Experience (EPCACE) from the International Statistical Classification of Diseases, Revision 11 (ICD-11) is foreseeably an instance in which patients vulnerable to aloneness will be less likely to receive effective treatment and thus will become even more voiceless, further disempowered, and more vulnerable to humiliation throughout the life cycle’s inevitable stressors and losses.

EPCACE was incorporated into ICD-11 as a form of Complex PTSD (cPTSD) as of June 2018. EPCACE is defined as an enduring personality change lasting for a minimum of 2 years that a patient experiences following a catastrophic stressor (ICD-10). The events of the stressor must also be so extreme that one should disregard any genetic vulnerabilities or predispositions that would further influence personality changes. These experiences can include imprisonment in concentration camps, disasters, and long-lasting capture with a persistent threat to life.

ICD-10 EPCACE represents the experiences of a particularly vulnerable population group, one marked by great loss, separation from a community, and aloneness. Such isolation from nourishing connections is a major dimension of deep and enduring personality change. Especially in cases of massive psychic trauma such as the Holocaust, involving the loss of an entire community and its way of life, fundamental bonds of social connection, trust, and support are broken, and the individual is left profoundly alone. Such affective changes point to the insufficiency of research on survivors left in such a devastated state.

We acknowledge that there is great variability in the experience and suffering of survivors of catastrophic events. As with any clinical diagnosis, a diagnosis of EPCACE is no substitute for a formulation tailored to the needs of the individual patient and that patient’s family. An EPCACE-based formulation can highlight such factors as extreme helplessness and aloneness, whether human agency was the cause of the catastrophic event, whether the event involved humiliation of the survivor, and whether the survivor remained in the zone of danger after the catastrophic event. These factors may be evident both individually and transgenerationally, as they are in the suffering of some of the survivors of the Holocaust who remained in areas where anti-Semitism and its dangers continued to be prevalent.

With careful attention to individualization of formulation, there is evidence for the benefits of EPCACE being included in the next revision of DSM as its own unique diagnosis. While care needs to be taken to avoid a reductionist and dehumanizing misuse of the diagnosis of EPCACE, the presence of this diagnosis in standard diagnostic taxonomies of psychiatric disorders can guide treatment formulations to good effect. Furthermore, EPCACE is an integrative diagnosis that offers clinicians the capacity to transcend diagnostic categorization by bridging personality disorder with trauma-related disorder, fulfilling an integrated biopsychosocial approach.

Our proposal has strong historical precedent. By 1992, the concept of trauma-inflicted personality changes had been well studied, as described by Herman and colleagues

 and later confirmed by many others, including Beltran and Silove,

 In an effort to distinguish personality changes as a result of catastrophic events from those with other causes, the ICD-10 task force decided on the inclusion of EPCACE. Personality traits such as hostile or distrustful attitude toward the world and social withdrawal, chronic feelings of emptiness or hopelessness, of being on edge as if constantly threatened, and estrangement distinguished EPCACE from related disorders.

With catastrophic genocidal trauma that includes extreme helplessness, humiliation, and the destruction of a validating community, resulting in aloneness, there is also a potentially lifelong vulnerability to shame.

 Such personality traits may emerge post-catastrophe and then become dormant. Nonetheless, they may reemerge with disruptive life-cycle events such as helplessness, humiliation, separation, loss, and grief or with news events, such as can occur for Holocaust survivors when anti-Semitism reemerges. Similar events may result in seemingly divergent personality traits emerging among survivors or even within a survivor, such as when there is an intensification of efforts to avoid massive grief concurrent with a counterphobic adaptation.

To test the validity of such an EPCACE diagnosis, Beltran and colleagues

 undertook a comprehensive survey of clinical psychologists and psychiatrists: 89% of respondents agreed that personality can be altered by trauma occurring in adulthood. Of those 89% of respondents, torture and concentration camp exposure were identified by 91% and 90% respectively as likely to produce changes to personality, followed by 72% for war exposure, 66% for sexual assault, 57% for hostage situations, 52% for domestic violence, 25% for natural disasters, and 24% for motor vehicle accidents.

Despite this substantial evidence, only 16% of clinicians had ever used EPCACE as a diagnosis for their patients, although it had been a valid ICD-10 diagnosis for 7 years before Beltran’s survey. Those who responded to the survey also cited issues of symptom overlap between EPCACE and more commonly used diagnoses, specifically depressive disorders and borderline personality disorder. However, EPCACE is marked by stable changes in personality, whereas borderline and depressive disorders are marked by instability in mood and affect.

It is foreseeable that post-traumatic avoidance of reminders by both patient and clinician is even more pronounced in catastrophic trauma. This may be another factor that contributed to the underutilization of EPCACE in its debut as a diagnosis. Alas, the underutilization of EPCACE is a loss for a significant proportion of patients who might otherwise have united as a treatment community. This loss is compounded by the fact that aloneness is often seen in the transgenerational transmission of EPCACE-related suffering. Group therapy is therefore a vital modality in EPCACE treatment across generations and in fostering the transgenerational transmission of resilience.

A follow-up study of the validity and utility of EPCACE in 2008 by Beltran attempted to redefine the broad aspects of the diagnosis and identify the key criteria that described a person with EPCACE. Twenty-four mental health clinicians who worked with patients who had experienced war and sexual assault as well as recently displaced refugees provided valuable feedback. Not only were the key attributes of “A hostile or mistrustful attitude toward the world, social withdrawal, feelings of emptiness or hopelessness, a chronic feeling of being ‘on edge,’ as if constantly threatened, and estrangement” identified, but mental health practitioners felt significant features were excluded from EPCACE’s operational definition. These include “somatization, self-injurious/self-damaging behaviors, sexual dysfunction, and enduring guilt,” which if included would differentiate EPCACE from complex PTSD and strengthen the operational validity of the diagnosis.

 Since then, no changes to criteria or follow-up studies have been conducted to improve the utility of EPCACE.

Research into EPCACE has been limited, as manifestations of the core symptoms can often differ depending on viewpoints and type of trauma. A core feature of EPCACE such as “a hostile or mistrustful attitude toward the world” can be operationally expressed by multiple symptoms such as anger, aggression, and other countless variations.

 Holocaust survivors who were identified as “feeling as if the Holocaust experience was continuing” were more likely to suffer symptoms of mental disorder, whereas those who avoided the traumatic memories altogether had a higher mortality rate due to illness.

 Patients with a diagnosis of EPCACE may isolate themselves not only from their communities, but also from proper mental health care.

Alternatives to inclusion of EPCACE as a distinct diagnosis

Critics of the inclusion of EPCACE in diagnostic taxonomy claim that it lacks specificity and is insufficiently utilized. To address these concerns, Maercker and colleagues

 proposed to reconceive EPCACE as part of cPTSD in ICD-11. Following this recommendation, the World Health Organization trauma team eliminated the diagnosis of EPCACE.

 cPTSD incorporates patients with personality changes as a result of exposure to single or multiple traumatic experiences, as long as the requirement of three core features of PTSD is met; these core features include changes in affect, self-concept, and relational function.

Alas, modifying the diagnostic criteria for cPTSD to consolidate EPCACE and other trauma-related disorders may also lead to mislabeling and downgrading the seriousness of personality changes, as well as overlooking potentially transgenerational personality changes. Because different experiences may produce different neurological and behavioral effects, it would be unwise to disregard the type of event and its impact on affect.

A later study noted a more specific set of criteria that must be met, as well as additional symptoms such as changes to somatization, self-injurious/self-damaging behaviors, and sexual dysfunction that would largely be left out of the criteria for cPTSD.

 The current criteria for cPTSD-which encompass the majority of EPCACE cases tested by Keeley and colleagues18-faced diagnostic issues when practitioners became aware of the origin of the trauma.

Another argument against the diagnostic inclusion of EPCACE is symptom overlap between EPCACE and cPTSD. While there is a spectrum of post-traumatic disorders, with overlap among diagnostic categories, the presence of such similarities does not invalidate the clinical usefulness of an EPCACE-inclusive categorical approach in the initial process of clinical reasoning, differential diagnosis, treatment planning, and prognosis. Therefore, future ICD workgroups should reconsider EPCACE’s inclusion into cPTSD, given the weight mental health professionals place on traumatic origin, and restore EPCACE as a distinct diagnosis.

The American Psychiatric Association has opted for a more conservative route in DSM-5 by incorporating elements of cPTSD and EPCACE into the diagnosis of PTSD. DSM-IV had largely suffered from “poor interrater reliability of personality disorder diagnoses, poor stability over time, poor discriminant validity, and poor general coverage of personality disorder as well as poor clinical utility.”

 DSM-5 requires that adult patients being evaluated for stress disorders meet eight symptomatic criteria following exposure to trauma. Galatzer-Levy and Bryant

 found that the current diagnosis for PTSD could arise from 636,120 unique combinations of the eight criteria listed in the newly formulated definition. With so many combinations, PTSD has been utilized as an all-encompassing definition that lacks the specificity needed to adequately diagnose trauma. The diagnosis of trauma-related disorder should not be done on a one-size-fits-all basis, but rather should consider the elements of trauma and its disparate effects on individuals.

Why EPCACE should be reborn as a distinct diagnosis

As it currently stands, EPCACE has lost its core values in the newly revised ICD-11 and the previously published DSM-5. Given that EPCACE is marked by hostile attitudes toward society, withdrawal, emptiness, and hopelessness as well as constant vigilance and estrangement, the salient characteristic of the disorder is the sense of aloneness that leads to massive social disconnection. EPCACE has significant features in common with the kinds of compounding trauma seen in autism spectrum disorder or adolescent-onset psychosis as a person becomes isolated and marginalized. With EPCACE, patients suffer a loss of community and trust with the outside world. With the loss of community, as in the Holocaust, there is an ever-greater risk of the transgenerational transmission of trauma and far fewer transgenerational resources for resilience such as loving grandparents or an extended healthy family.

EPCACE should be a stand-alone diagnosis rather than a formulation because diagnoses are heuristics for formulations, which guide prognosis and treatment planning. Also, if diagnoses are missing key ideas, those will also be missing in formulations. Aloneness and vulnerability are distinct factors characteristic of EPCACE that are coherent only at the diagnostic level. Moreover, with catastrophic experiences the life cycle and transgenerational dimensions of trauma and resilience are more likely to be central.

The majority of mental health clinicians in active practice or completing graduate education will utilize either DSM-5 or ICD-11. When Evans and colleagues

 surveyed a global sample of psychologists, they noted that 78% of respondents opted for a diagnosis that is flexible enough to account for cultural differences. Severity of a diagnosis was highly rated as a goal of clinical care, as 88% of the respondents believed that it should take the form either of a subtype based on severity or degree of functional impairment or of a separate diagnosis.

Further research has linked trauma to quantifiable changes in personality. In a comparison of late-onset personality pathology due to wartime trauma with prior personality disorders, 24.3% of patients had a personality disorder develop only after exposure to catastrophic events. When compared with those who had preexisting personality disorders, those with late-onset personality pathology had a three-fold higher rate of PTSD symptoms. Moreover, there were higher rates of suicidal ideation and self-reported emotional distress compared with persons with pre-trauma pathology.

Additional research has shown not only physical changes to the brain but also transgenerational effects that pass from parent to offspring.

 Such a link between catastrophic experiences and personality necessitates the use of integrative criteria such as EPCACE, which will serve the interests of patients and empower clinicians in making treatment decisions.

Self-help networks for EPCACE patients not only ease personal growth but also offer a safe communal space for patient empowerment. For example, since the aftermath of World War II, displaced and persecuted populations have found themselves unified and united by their shared experiences. Illustrative are reports of suffering experienced throughout Europe by survivors of massive psychic trauma with loss of their nurturing emotional milieu. Having the capacity to identify such traumatized populations from various countries and backgrounds and to unite them under a self-help support network enables survivors to create community for one another and foster therapeutic approaches which, via an empowering community, seek transgenerationally to treat the transmission of trauma and encourage the transmission of resilience.

Aloneness, along with helplessness about being alone and feeling humiliated, has increasingly been found to be a major risk factor across the illness spectrum. Aloneness post-trauma and in the midst of grief, to which persons who suffer from EPCACE are highly vulnerable, can reasonably be expected to compound this risk factor. Therefore, the diagnosis of EPCACE can be an important step toward remediation rather than exacerbation of the aloneness, helplessness, and humiliation that, in a vicious cycle, can lead to further isolation.

To avoid the misuse of EPCACE, it is vital to be aware that some survivors of catastrophic experiences in which terror involves dehumanization, degradation, and humiliation may therefore experience a heightened sensitivity to helplessness and humiliation. Receiving any psychiatric diagnosis is humiliating; therefore, patients frequently avoid seeking clinically based help. However, a newly empowered population brought together by that very catastrophic experience can provide solace, rebuild self-esteem, and relieve ongoing collective suffering.

All too often, both the fragility of aging and disturbing news events bring home to EPCACE sufferers disturbing reminders of catastrophic trauma. When applied with care, EPCACE as a diagnosis is not only helpful in clinical formulation and treatment planning but also has the potential to support the creation of healing communities for life-cycle stressors and losses. EPCACE-informed development of additional treatment modalities, such as group bereavement therapy and support groups outside of the clinical context that are focused on supporting survivors’ agency, empowerment, self-respect, connectedness, and creativity, has the potential to reduce post-catastrophic isolation, demoralization, and suffering.

Dr Bursztajn is corresponding author and can be reached at 

Dr Bursztajn wishes to dedicate his contribution to this work to his family, friends, and patients, Shoah (Holocaust) survivors and resisters.

Dr Tanaka is Assistant Professor of Psychiatry, Oregon Health & Science University (OHSU) School of Medicine, Portland, OR; Mr Tang is MS-1, Pacific Northwest Health Sciences, Yakima, WA; Dr Haque is Lecturer on Global Health and Social Medicine, Harvard Medical School, Boston, MA; and Dr Bursztajn is Associate Professor of Psychiatry, Part-Time, Harvard Medical School, Boston, MA. The authors report no conflicts of interest concerning the subject matter of this article.

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