Delusions of Fatal Contagion Among Refugee Patients JOSEPH WESTERMEYER. M.D., M.P.H., PH.D. TOUXA LYFOUNG. M.D.
B.S. MICHELLE WESTERMEYER. B.A. KAREN W AHMENHOLM.
Delusions offatal contagion were encountered in about 10% ofrefugee psychiatric patientsfrom Southeast Asia belonging to one ethnic group. the Hmong. Psychotic depression was the most common diagnosis among the Hmong patients with delusions of contagion. whereas paranoid and schizophrenic diagnoses predominate in patients with similar delusions from other refugee groups. Some cases also occurred as a shared delusional disorder. Associatedfindings included isolation from the community. intrafamilial conjlict,jailure to acculturate. and sexualfrustration or conjlict. Most patients responded to tricyclic medication. later supplemented in about halfofthe cases with a neuroleptic. This syndrome. which does not appear to have been described previously. should be considered in cases ofsomatizing refugees who present repeatedly to medical facilities.
ajor depression has been shown to be a common psychiatric problem among refugees in clinical and epidemiological studies. ' .2 Psychotic depression, which occurs relatively frequently among refugees,3 usually includes somatic delusions, specifically, delusions of infection, parasitosis, or infestation. This study was undertaken to report the delusion of fatal contagion among refugee patients, to describe demographic and clinical characteristics ofthe patients at risk for this clinical entity, and to describe our
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Received March 28. 1988; revised August II. 1988; accepted September 14. 1988. From the Department ofPsychiatry of the University of Minnesota in Minneapolis. Address reprint requests to Dr. Joseph Westermeyer. Depamnent ofPsychiatry. Box 393. University ofMinnesota Hospital and Clinic. Harvard Street at East River Road. Minneapolis. MN 55455.
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clinical approach and experience with these patients. Delusions of fatal contagion generally involve a belief that one is infested with various organisms, such as bugs (referred to in the literature as acarophobia4 ) or a venereal disease (referred to as venereophobias). These conditions are not phobias in the technical sense of that tenn, and we refer to them here as delusions.
METHODS The group studied consisted of 30 Hmong refugees from Laos who presented to the department of psychiatry at the University of Minnesota over a five-year period. Approximately half of the patients were self-referred, and the remainder were referred by social agencies, mental health professionals, and a family physician. Demographic data, including the usual social infonnaPSYCHOSOMATICS
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tion plus migration-relevant infonnation, were obtained by a bilingual staff member who was an ethnic peer of the patients. Clinical and methodological approaches described elsewhere6-ll were used to ascertain the presence, fonn, and content of the patients' symptoms, including the delusions. DSM-Il/ criteria, using all five axes, were employed. FINDINGS Demographic Characteristics There were 17 women and 13 men ranging in age from 18 to 78 years, with a mean±SD age of 40.7±16.6 years. On average, men were younger than women (31.1±8.4 and 48.2±17.1, respectively). Marital status also showed different trends between the sexes. Three men and no women were single, ten men and eight women were married, and no men and nine women were widowed. The educational level in this patient group was low, even for the general Hmong community.9 A total of 24 had never attended school, four had some grade school education, and two had graduated from high school. Most had not acculturated well to the U.S., as evidenced by their high unemployment rate (n=24). Length of stay in the U.S. among these patients varied from three months to eight years. Clinical History Delusions of both parasitosis and venereal disease were reported by 13 persons. Nine individuals stated that they had only venereal disease, and seven people believed that they had parasites alone (bugs, small insects, or crawling buglike organisms). One stated that he had been infected with tuberculosis by medical personnel. Patients believed that their contagious diseases were debilitating, and that ultimately they would be fatal. Several patients also reported gustatory hallucinations of a foul odor emanating from their bodies. The alleged source ofcontagion was a sex partner (spouse, dating partner, or casual friend) in 13 cases. Eleven patients reported that the VOLUME 30 • NUMBER 4 • FALL 1989
sources were Hmong relatives, including in-laws in four cases. Non-Hmong female contacts were blamed in five cases (i.e., a Korean immigrant, a black American, a Mexican American, and two white Americans). Non-human fomites were named in six cases (i.e., public toilets in two cases, used or secondhand clothes in two cases, and vegetables and household carpeting in one case each). More than one possible cause was posited in five cases. The mode of transmission of the alleged venereal diseases was remote in several cases and did not involve any genital contact. Some examples were living in the same house, using the same toilet facilities, enjoying a friendly embrace, wearing "contaminated" clothes, and talking with someone. Some individuals also reported that the disease could be transmitted through the telephone lines, radio, or television, although none stated that his or her own illness had originated in this way. Duration of symptoms ranged from three weeks to eleven years. Excluding the shortest case (three weeks) and the two longest cases (nine and II years), the duration of the illness prior to the referral ranged from one month to 60 months, with a mean±SD duration of 16.8±17 months. All patients had sought previous medical attention. Ten out of 30 had also employed some traditional healing method, for example, a ua neeng ceremonial, a magic charm, or herbal medicines, a rate four times the rate at which the Hmong at large typically pursue traditional healing.9 One patient first had the delusions in Thailand after he fled Laos; the other cases started in the U.S.
DSM-11I Diagnostic Assessment Psychotic depression was the most common diagnosis, occurring in all but two cases. The two exceptions were a case of bipolar psychosis and one of atypical psychosis. Eighteen patients had an associated Axis I psychiatric diagnosis, including shared delusional disorder (n=14), posttraumatic stress disorder (PTSD) (n=3), mild mental retardation (n=I), and opium addiction (n=I). One patient had three Axis I diagnoses 375
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(psychotic depression, shared delusional disorder, and PTSD). Only three patients had Axis II personality disorders (one each of schizoid, schizotypal, and obsessive-compulsive disorders). Axis III somatic illnesses were also infrequent, occurring in seven cases. One person was legally blind, and six others had mild disorders. Although patients initially complained bitterly about these minor disorders (i.e., arthralgia of osteoarthritis, urinary tract infection, hayfever, dry skin, and benign uterine tumors), they later produced minimal problems once the patients recovered from their psychiatric disorders. Distribution of Axis IV psychosocial stressors in the last year was as follows: none (n=4); minimal (n=l); mild (n=6); moderate (n=8); severe (n=7); and extreme (n=4). None of the patients had catastrophic stressors in the previous year. There was a trend for the more recent arrivals to experience more stressors (r=.2l, d/=29), but this correlation was not statistically significant. The patients' highest level of coping in the last year (Axis V) was distributed as follows: superior (n=l): good (n=13): fair (n=ll): and poor (n=5). None of the patients had very good or very poor functioning. A slight but nonsignificant trend existed between greater coping and longer residence in the United States (r=.20, d/=29). Treatment Characteristics The following standard approach was developed to treat psychotic depression in these cases. • Orient the patient and family to the course of treatment, the tricyclic regimen, side effects, time until response (usually several weeks), and duration before recovery (usually several months). • Allow time for the patient and the family to consider treatment and to commit themselves to a course of treatment, which in most cases will be longer than they had anticipated. • Begin low doses of a tricyclic drug (generally imipramine because of low cost and few side effects, hence better compliance), 376
and increase dosage until clinical response or therapeutic blood levels are achieved, whichever occurs first. • Add a neuroleptic drug if hallucinosis or delusions persist despite several weeks of therapeutic tricyclic blood levels. • Hospitalize the patient if suicidal or homicidal threat becomes appreciable or if outpatient treatment is failing. . • Engage the patient in one or a variety of appropriate psychotherapies during regular visits. Of 28 treated patients, 27 received a tricyclic medication. Dosages ranged up to 300 mg imipramine in order to obtain therapeutic blood levels. It was necessary subsequently to add a neuroleptic drug in nine cases, usually in relatively lowto-moderate doses. Only four patients required hospitalization, which ranged from two to four weeks. Two out-of-state patients were seen in consultation and returned to the referral source for subsequent treatment. Outcomes were generally good (11 improved, and 14 recovered) in the 25 patients who eventually complied with treatment recommendations. Two patients were lost after one visit, and another two were lost after two visits. Flight from care in these patients occurred early in our clinical experience with this disorder. Our failure to engage them in treatment was probably due to our routine approach to assessment and care. These patients were involved in an intensive search for an instantaneous, totally somatic solution to their perceived fatal illness. We have subsequently avoided this by initiating more rapid assessment and treatment (requiring spending from three to six hours with the patient on the first day). Among the 24 patients who did not immediately drop out of treatment, the number of treatment visits ranged from three to 24, with a mean±SD number of visits of 1O.5±5.9. Duration oftreatment varied from two weeks to 14 months, with a mean±SD length of treatment of 6.l±3.9 months. Recurrence occurred in five patients, all of whom had discontinued treatment prematurely because they reported feeling well again; they PSYCHOSOMATICS
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subsequently recovered when treatment was resumed. Psychiatric Rating Scales The patients who eventually were hospitalized reported a higher mean level of symptoms on the Beck Depression Inventory, 10 a self-rating depression scale, than did patients who were not hospitalized (38.5 and 20.8, respectively; 1=2.78, p<.05). They also reported poorer coping on the Global Assessment Scale II (21.7 and 41.6, respectively; 1=3.34, p<.OO5). Similarly, patients who eventually received a neuroleptic medication reported more symptoms on the Beck than did those who did not (20.4 and 35.0, respectively; 1=2.71, p<.05). A longer duration of treatment was correlated with both higher scores on the Hamilton Rating Scale for Depression 12 (r=.46, p<.05) and higher scores on the Hamilton Anxiety Scale'3 (r=.47, p<.05). The number of treatment visits was correlated with higher scores on the Hamilton Anxiety Scale (r=.51, p<.0 I).
Case Reports Some patients manifested a shared delusional disorder (also known as folie deux or folie famil/e), as this example illustrates.
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A family of four adults presented with the delusion that "little bugs" were wandering into and out of their nose and eyes. The bugs were blamed for waking them up at night. causing them to be irritable and lose their appetites and their libido, producing weight loss, and causing them to emanate "bad odors." The initiator of this folie was a 19-year-old woman. who blamed contagion from her janitorial job at a hospital for her disease. The husband also blamed the American sponsor for getting her the job. and he planned to kill the sponsor and then commit suicide. All four family members met criteria for major depression. A fifth family member. a sevenmonth-old child who suffered from insomnia and periods of crying at night for four months, was perceived by the family as having the same fatal disease. Another folie case also involved four mernVOLUME 30· NUMBER 4· FALL 1989
bers of an extended family. Their delusions involved the spread of venereal disease through "bugs," which then presumably spread through nonvenereal means within the family. Three women and one man presented with reports of "bugs" burrowing into their skin. migrating under their skin, and darting into their muscles to cause sharp pains. They ascribed their symptoms of worry. hopelessness. weight loss. anorexia. and insomnia to their "venereal disease bugs." The family matriarch, a 70-year-old woman. claimed that her son (who had befriended an immigrant Korean woman) had brought the disease into the home. From the son. the illness had "spread" to his wife. who tried to hang herself because of her suffering. The family had been assessed by several physicians in family practice. internal medicine. and dermatology; lotions had been prescribed. This illness had disrupted the family for one year when we first encountered them.
Individual cases (Le., those without a shared delusional system) tended to occur among single or widowed persons. Sexual themes, social isolation, and failure at acculturation tasks were prominent features, as the following brief descriptions demonstrate. A 27-year-old single unemployed man. who was mildly retarded and blind since the age of 18. presented with delusional parasitosis and bipolar disorder; his efforts to leam English. acquire a job, and obtain a wife had led to repeated failures over several years. A 39-year-old unemployed widow had become transiently involved with a man following the sudden death of her husband six years earlier: she believed she was dying of a venereal disease. A 42-year-old unemployed widow complained that "bug-like creatures" were eating away at her vagina and progressing inwards and upwards into her body; she believed that she had an AIDS-like venereal disease. A 38-year-old married woman was suffering from a severe depressive disorder. and she became convinced that she had a venereal disease. She was unsuccessful in convincing her sister and husband (who incidentally were both acculturating well) to share her belief. A 71-year-old widow believed that she had been bitten by a bug on her perineal area while sit377
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ting on the floor at horne; although she had had no sexual relations for a decade, she finnly believed she had a fatal venereal disease. A 38-year-old unemployed widow reponed that since her husband's death 15 years ago. she had had two sex partners. She gave these past relations little consideration until she developed weight loss. worry. crying spells, suicidal ideation. difficulty concentrating. and poor memory; then she became convinced that she was in the tenninal stages of a venereal disease. A 32-year-old unemployed married man, who had intercourse with a woman while his wife was away visiting relatives one year previously. developed fatigue. impotence, nine-pound weight loss. insomnia, irritability, and low self-esteem. He believed "small animals" were crawling around inside his body as a result of a fatal venereal disease. A 22-year-old unemployed married man had intercourse with a woman who was a casual acquaintance. Subsequently he began to hear "strange sounds" projecting out of his head and was convinced that he was dying of AIDS or syphilis. An 18-year-old single student. who lived with his widowed mother. had intercourse with a 50-yearold divorced woman. Within several days he developed symptoms of depression and anxiety and became convinced that he had an incurable venereal disease and that his death was imminent.
Only one patient reported contagion due to an infection of other than bugs. bug-like creatures. or venereal diseases. A 30-year-old man presented with chest pain. He accused two nurses at the county hospital of giving him tuberculosis when they administered parenteral injections "to experiment on me." He believed that the injections were causing the organs in his chest to rot, causing a foul "odor of death" to be constantly present about him.
In another case. a former opium addict resumed opium use to relieve his symptoms. Following a brief extramarital relationship with a Hmong woman. the patient, a 43-year-old unemployed fonner addict. began to experience anorexia, insomnia, somatic complaints, and the belief that he had a fatal fonn of venereal disease. When other attempts atlrealment failed, he began to smoke opium to relieve his symptoms. 378
DISCUSSION
Sociocultural Factors Although 40% of our refugee patients were not Hmong, only the Hmong patients were seen with delusions of fatal contagion. (We tested several other refugee patients from other ethnic groups who presented with obsessional fears of one or another disease but who lacked firm beliefs that they had such diseases.) The reason for the preponderance of delusions of contagion among Hmong is not clear, since we had heard reports that refugees from other ethnic groups have presented elsewhere with this syndrome. Our experience may relate to the fact that we have a Hmong physician in our program (TL). making Hmong patients more apt to seek care here. It may also be due to the fact that Hmong refugees in the U.S. have considerably lower educational levels and higher rates of unemployment (i.e., factors frequent among patients with somatic delusions) than members of other refugee groups. A general dictum has been that beliefs that are culturally consistent and supported by ethnic peers should not be considered delusional. However. there were no Hmong folk illnesses in Laos that involved invisible parasites or venereal organisms that could not be documented with laboratory analysis. The associated symptoms in these cases were mostly consistent with psychotic depression. Our patients would not abandon their fixed idea of having a fatal infestation, even in the face of repeated negative test results and reassurances by numerous physicians and healers. Goetzl '4 has previously identified the problem of distinguishing delusions from cultural belief in a mentally ill immigrant. Goetzl's patient, who had become occupationally and socially disabled. presented with symptoms of depression, paranoia, and agitation. The patient and his wife believed that his condition was due to streghe, an Italian folk disorder involving demon possession. The wife was also seriously depressed but not paranoid. Goetzl believed that the couple had a folie Ii deux. a condition we also encountered in PSYCHOSOMATICS
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14 ofour 30 patients (five families). Goetzl 's case and our cases involved three common factors: psychopathology (predominantly depression) in the affected family members, isolation of the family from community contacts, and hostility or hostile dependence within the family. A report by Tseng lS also identified the role of isolation in the development of folie in a refugee family in Taiwan. Interpersonal and Psychological Factors A common theme in the delusions of our patients was that some other person had passed on the disease to the refugee through contagion. Generally a spouse, a former lover, or a family member was presumed to be the source of contagion. Among five cases in which indigenous Americans were blamed, the source was generally impersonal (i.e., a stranger or an unnamed person). "Deflection of hostility" into a delusional system has long been known and well described in association withfolie adeux. 16 However, the somatic delusions of depression typically do not have a contagious element to them. Instead, they usually involve cancer, organ deterioration, or other noncontagious pathology. In these refugee cases, the elements of psychotic depression and "deflection of hostility" are both present in the delusions of fatal contagion. Delusions of parasitosis and venereal disease have long been associated with sexual conflicts and guilt.4.17.18 Sexual themes were also present in many of these refugee cases. For example, blatant Oedipal issues were evident in the 18-year-old man, who, in trying to break out of a mutually dependent relationship with his widowed mother, had a brief affair with a 50-year-old woman. Feelings of sexual guilt and romantic disappointments were involved in several cases of extramarital affairs. Frustrated sexuality was present among widowed patients, as well as in some married couples whose sexual companionship had been interrupted by depression or marital strife. In some cases it was not the patient's own sexual behavior that was the focus for concern but the sexual behavior of a son or daughter or the imagined sexual infidelity of a spouse. VOLUME 30· NUMBER 4· FALL 1989
Psychopathological Factors Several aspects of contagious disease delusions in these refugee patients resembled somatic delusions in other populations. Delusions of contagion are encountered infrequently in psychiatric practice, but students of this phenomenon believe that it is probably more common than reports indicate. '9.20 Reports of such patients occur in the medical literature as often as they do in the psychiatric literature,21-23 probably due to these patients' insistent search for a medical cure. Some of these patients do not come to the attention of psychiatrists since they insist on the existence of an infectious disease. For example, a survey of dermatologists identified 365 patients with paranoid delusional parasitosis,24 but only a minority of cases were referred for psychiatric consultation. 2S Delusions of venereal disease do present to venereal disease clinics in the U.S. 26 and in Britain. s Sufferers of this disorder tend to be unsophisticated persons or in lower socioeconomic groups,27 which may also augur against psychiatric referral. While folie deux is not an inevitable component of the syndrome, it may be present and can seriously complicate assessment, treatment, compliance, and outcome. 2O.27 A paranoid axis is often reported in American patients,28 and paranoid symptoms were manifested in the projection of cause onto others by these refugee patients. Certain differences also exist between these refugees and other reported cases of contagious disease delusions. Native-born American patients with delusions of contagion tend to be female and over age 40,20 whereas 43% of the Hmong patients were male, and about two-thirds were younger than 40. Any depression or anxiety in American patients tends to be seen as secondary to the somatic delusion,28 whereas depressive symptoms predated onset of delusions in most Hmong cases. Most of these refugees met criteria for major depression with psychosis, rather than paranoia, as observed in other groups. Observations of two hypoparathyroid patients with basal ganglia calcification have led a German investigator to posit an organic basis for this syndrome in the brain stem. 29 Only one of our patients had
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experienced an organic brain lesion (with onset of blindness), and it had occurred a decade before his delusions of infestation. AIDS delusions (reported by a few Hmong patients) have not been reported yet in American patients, although factitious AIDS complaints have occurred in several American patients with Munchausen's syndrome.30-32 (We have also treated one American "Munchausen AIDS" patient, who was clearly unlike these refugee patients.) Treatment Factors Literature from a decade ago on treatment of delusional parasitosis strongly lauded the neuroleptic pimozide as a treatment modality for this disorder. 20.28.33-3S One group went so far as to call it a specific treatment for the disorder, since it performed well in one double-blind study of II patients. 36 Our experience did not confirm these earlier conclusions. One of our patients had previously received pimozide without benefit. In the cases requiring neuroleptic medication, we successfully employed fluphenazine, perphenazine, trifluoperazine, thioridizine, and haloperidol in low to medium doses. These non-pimozide neuroleptics have also proven effective for this syndrome in the hands of other clinicians. 3S.31.38 Tricyclic antidepressants were the central therapeutic modality used to treat most of our refugee patients. Other clinicians have also observed good effects with tricyclic medications. 39 We agree with Freinhar2° that pharmacotherapy should be contingent on the patient's total psychopathology, not based solely on the content of the patient's delusions and hallucinations. Psychotherapy was instituted in all of our cases. The goals of therapy were three: to reduce social isolation from the expatriate Hmong community and the American community; to reduce hostility and hostile dependence within the family; and to facilitate the ability to identify affect in patients in whom somatization had substituted for self-recognition of affect. The inability to identify one's own affect or mood is a common among refugees, many of whom have experienced war and terror, losses and missed grief, acculturation failure and racism, social isolation, 380
and fear of the majority society. Psychotherapeutic approaches, which varied with the needs and abilities of the particular patient and the phase of treatment, included desensitization, contingency contracting, other forms of behavior modification, social network reconstruction, rehabilitation and acculturation counseling, education, suggestion, support, reassurance, and insight-oriented psychotherapy. A refugee-specific approach, especially relevant to this patient group, was "affective relearning." This consisted of aiding the patients to again recognize the affects attached to their own thoughts, behaviors, successes, failures, relationships, and other events in their daily life, a skill that many had abandoned while attempting to cope with overwhelming loss and change during the flight from their country and resettlement. One young, acutely ill patient improved so much from the first assessment interview to the next visit that medications were withheld and treatment was limited to psychotherapy. Families were also seen for assessment and reassurance in most cases. Family therapy, especially in the folie families, was undertaken once patients were recovering nicely. As with treatment for any delusion, there was no benefit to trying to "prove" to the patients that contagious disease was not present, argue them out of it, or tell them that "it is in your head." Treatment of this syndrome, as in treatment of any psychotic disorder, involved accurate diagnosis, establishment of rapport, pharmacotherapy as indicated, and~specially in the early stages of recoveryavoiding confronting the delusion. Transcutaneous electrical stimulation has been used to treat delusions of parasitosis. 40 We did not employ this modality. However, three of our patients had been previously treated unsuccessfully with electroacupuncture. They had not received concomitant psychiatric care while receiving the electroacupuncture. Delay in Psychiatric Treatment Although each of these patients had seen numerous physicians, only one had been referred to psychiatric care. Absence of early referrals PSYCHOSOMATICS
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from physicians probably prolonged the patients' morbidity, contributed to the difficulty and length of treatment, and increased the cost of care. Part of this failure by physicians may be ascribed to the "bound-up affect" so common in patients who manifest somatic delusions. They typically present as placid, even smiling patients who focus their own attention (and often succeed in focusing the physician's attention as well) on the somatic complaint. Or if affect is present, it is related to the delusion, taking the form of obvious distress and consternation about failing health or imminent death from the delusional contagion. Other patients are rageful toward either the source of their infestation or their previous physicians and healers who have failed to cure the malady. Some refugee patients' frenetic, panic-stricken search for immediate relief may also contribute to lack of referral, since some clinicians are reluctant to initiate psychiatric referral until good rapport has been established.
Patients with delusions offatal contagion are often difficult for physicians to manage; they are often described in the literature as being suspicious, antagonistic, irascible patients with hysterical or compulsive symptoms.4•2S •41 -43 Most of these refugee Hmong patients did not fit this stereotype, but several did. While we recognize the dilemmas these patients pose for physicians, nonetheless it appeared that refugee community leaders and even refugees themselves sought psychiatric care independently or on a word-ofmouth basis when other medical facilities had failed them, since about half of these patients (especially those seen earlier) were self-referred. Hopefully, earlier referrals and reduced morbidity can be accomplished by alerting primary care physicians to the prevalence of this disorder.
The authors express their appreciation to Allan Callies. John Neider. and Thitiya Phaobtong for assistance in tabulating and analyzing these data.
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