|Troubled Love:Child Abuse|
|ObjectivesThe purpose of this article is to describe current knowledge about Munchausen syndrome by proxy and to recommend a compassionate and informed response to children and families who struggle with it.At the end of this article, you will be able to:Provide a current professional definition of Munchausen by proxyExplain how victims and perpetrators of Munchausen by proxy are identifiedDescribe compassionate, expert nursing interventions during the management of MBPObtain one continuing education hour for this course, #510A, by completing this exam. Clinical nurse specialist Margaret Ecker, MS, PNP, RN, has worked on the inpatient unit at UCLA Mattel Children’s Hospital and has been a nursing representative on the UCLA Committee for Suspected Child Abuse and Neglect. She is currently director of education at Saint John’s Health Center in Santa Monica, Calif. |
Any one of these signs taken alone will not signify MBP. Careful consideration of the complete clinical and social context is important to the investigation.Persistent or recurrent illnesses that cannot be explained or are very unusual.Laboratory results or physical findings at variance with the general health of the child.Standard treatments that always seem to fail. For example, intravenous lines always come out, or the child always vomits medications.Episodes of seizures, near-miss sudden infant death syndrome, or apneic or cyanotic episodes occurring only in the presence of the caregiver and that do not seem to respond to standard therapy.A history of multiple resuscitations in a child with no recognizable cardiopulmonary abnormalities.Siblings who had a similar episode or died.Caregiver who has had symptoms similar to the child’s within the previous five years.SOURCE: Dolan, B. (1998). “The hospital hoppers.” Nursing Times, 94(30), 26-7Munchausen syndrome by proxy is a rare but devastating form of child abuse. Its victims are made ill, often by the person they love most. The perpetrator, usually a parent or other caregiver, intentionally falsifies history, signs, or symptoms in the child to meet self-serving psychological needs.1 Untreated, the syndrome results in pain and suffering, and may end in the death of the child. Identification of the syndrome can be tricky and often is controversial. In true Munchausen by proxy, a perpetrator expressing complicated emotional problems abuses the child. The identification and management of the victim and perpetrator represent a challenge to healthcare providers.Baron Karl Friedrich H. F. von Munchausen was a legendary figure in 18th century culture who was notorious for his wild adventures as a soldier, hunter, and sportsman. He claimed to have survived a jump into a live volcano, traveled to the moon, and had Catherine the Great as a lover. The term Munchausen now refers to an outlandish story or one told with great charm.As a medical diagnosis, the term Munchausen syndrome was coined in the early 1950s to describe a cluster of behaviors involving adult patients who fabricate illness and subject themselves to painful or harmful medical procedures, primarily for the gain of attention. In the early 1970s, a British pediatrician, Roy Meadow, suggested the term Munchausen by proxy to describe the disturbing behaviors of parents or other caregivers who fabricate illness in a child to gain personal attention.2 The disease has been variously referred to as Munchausen syndrome by proxy, pediatric condition falsification, factitious disorder by proxy, and Meadow’s disease. This article will use Munchausen by proxy (MBP) to describe the abusive behavior as it affects the child and factitious disorder to describe the psychopathology exhibited by the perpetrator.Meadow proposed MBP after an investigation into several puzzling cases. In this group of patients, parents’ descriptions of seizures or apnea spells could not be explained by clinical findings. The caregivers’ insistence on the symptoms resulted in prolonged hospitalization, painful procedures, medication administration, and other medical interventions for the children. Through a combination of history, observation, and clinical investigation, Meadow determined that the caregivers in these cases had fabricated the descriptions. When the child was removed from the caregiver, all reports of seizures or apnea spells ceased.A growing body of literature describes MBP. A 1997 study describes use of covert video surveillance to observe infants whose parents’ behaviors had raised a pediatrician’s suspicions of MBP. Of 39 infants observed, 33 suffered intentional injury inflicted by a parent during the video taping.3 The study is especially compelling in its argument to allow use of covert video surveillance in carefully selected situations. The researchers recommend use of covert video in suspected cases after consultation with an attorney and hospital ethicists.3Another study describes 11 children whose parents reported their child having an apparent life-threatening event. Upon clinical investigation, however, no evidence of illness existed.4 Two deaths were associated with the syndrome. Many parents in this study had a background in health care.Individual case reports include sad and disturbing stories: children with mysterious skin disorders, the result of a parent’s secretly applying caustic material to the child’s skin; chronic diarrhea as the result of a parent’s administrating laxatives or other poisons; and seizure disorders brought on by prolonged suffocation.5 Although early literature focused on MBP in young children, a growing number of cases are reported in school children. The dynamics of the illness in older children are complicated since the children are often emotionally coerced to succumb to parental suggestion.In a notorious case in Florida, an 8-year-old child who had been featured in local news for her courage in the face of terrible illness was diagnosed with MBP in 1995. According to the mother, the girl had digestive problems, seizures, and an immune deficiency. Her primary diagnosis had been pseudo-obstructive bowel disease. The child had had 40 surgeries and more than 200 hospitalizations. She was receiving nutrition artificially by means of a gastrostomy tube and a central venous catheter. At one point, the family moved the girl to another hospital, behavior common in MBP. The nurses and other providers became suspicious of family motives and behavior. An investigation supported the finding of MBP. The child was removed to foster care, where she regained normal bowel function and normal nutritional intake, and returned to school. She is now functioning well, but evidence of her good health has not changed the testimony of her mother. She was convicted of child abuse in a trial by jury in October 1999.6DiagnosisSince the very foundation of heath care relies on the trust between patient and practitioner, the suggestion that a parent may be falsifying evidence can be shocking and disturbing. Perpetrators of MBP often are able to solicit sympathy from unsuspecting nurses, physicians, and even family members. Furthermore, the healthcare team assumes an unusual amount of responsibility in the case of MBP since the diagnosis involves not only child abuse, but child abuse in the presence of a seemingly caring parent. In one study of nurses who had recently cared for a child with MBP, 65 percent said their experience had significantly changed their views of patients and families. The nurses were more observant, more cautious, and less trusting after an experience caring for a patient with MBP.5The following information about diagnostic strategies reflects the current collaborative work of psychologists, pediatricians, and attorneys who have considerable experience dealing with MBP. Patient and perpetrator profiles have been proposed in past literature, but new recommendations suggest that profiles may be misleading. Some researchers think profiles may inadvertently miss a new or unusual presentation.7 Furthermore, parents of children who are actually chronically ill often present with behaviors of intense involvement in care that are completely justifiable, but may resemble the behaviors of MBP profiles.7MBP experts recommend two separate investigations when MBP is suspected: a thorough and intense review of medical records of the victim to establish the presence of illness falsification and a psychiatric evaluation of the perpetrator to evaluate for psychopathology.7 In order to report child abuse, the first step is essential. The second step helps providers construct effective management of the family, especially the perpetrator.The child victimThe primary focus of an investigation into MBP is the medical record. The quality of the review is critical, and it must be focused and detailed. Reviewers look for evidence of falsification or exaggeration by the perpetrator of symptoms, lab results, and diagnoses. The following kinds of evidence also may be present: patterns of missed appointments, an excessive number of appointments, increased ER use, or experiences of leaving hospitals against medical advice.7 In the event of diagnosis of a rare disease, an independent review of the medical record by a medical expert may be of use. In the Florida case described earlier, the diagnosis of pseudo-obstructive bowel disease was questionable since its occurrence is extremely rare.
During assessment of medical records, the reviewers evaluate the veracity of the medical history obtained from the perpetrator. A careful comparison of the medical record to the medical history can be illuminating. This underscores the importance of careful charting, especially documentation of observations by nurses. Making clear the source of the evidence is especially helpful. For example, “seizure for 10 minutes” is less helpful than “mother reports seizure for 10 minutes; child appears stable at this time.”Other evidence of fabrication of illness includes recurrent illnesses that appear unusual or incorporate inconsistencies in the narrative. A parent who reports prolonged and persistent vomiting in a child who appears well-nourished, for example, may raise suspicions. The review may reveal a parent seeking the advice of several healthcare providers but not facilitating communication between them, or the parent may even conceal evidence of consultations.Review of other records may be helpful, such as school records for attendance and performance information, court records, and police reports for evidence of legal issues.If the review of medical records raises the level of suspicion enough to support a child abuse claim, the diagnostic process will include a trial separation between the child and the perpetrator. Staff nurses play a crucial role on the team involved in this step. From the point of admission, the child must be constantly monitored, and there must be careful documentation of behaviors. At least one observer should be in the child’s room at all times. In addition to serving as witness and documenter, the observer enforces visitation guidelines, often established in court. These guidelines require that the nurse remain vigilant but courteous and firm. The obligation of terminating a visit when infractions occur can be daunting, but the nurse must be willing and able to defend the visitation rules. They are designed to provide a safe environment for the child while continuing to allow gathering of objective and accurate evidence.Emotional support of the victim during a trial separation is an important part of the nursing care plan. It is helpful to remember that the abuse may be clear to the healthcare team, but it will be a new and unwelcome suggestion for the child and for the abusive parent. Generally, supportive remarks are appropriate. Building trust and generating an environment of support are important nursing goals.Nursing documentation of patient behavior before, during, and after family visits plays a critical role in determining the plan of action. In general, the more detail, the better. Details about parent behavior, child response, increase or decrease of physical symptoms, and emotional response all are important. This nursing documentation often requires adaptation of existing charting forms to accommodate the volume of detail.The perpetratorResearch about MBP reveals that most perpetrators are women, usually mothers. Meadow found that 90 percent of perpetrators were mothers. In 5 percent of cases, the perpetrator was another female. One report describes two nurses who eventually were found to be perpetrators.8 In only 5 percent of cases, the perpetrator was the father.2 As our understanding of this illness increases, we may discover variations in these findings.The psychiatric evaluation of the perpetrator can be helpful in construction of a plan of management. The goal of the evaluation is to understand the motives. The technical definition of MBP requires that the perpetrator intentionally falsify information specifically with the purpose of gaining attention, respect, or other emotional advantage. The term to describe the behavior of perpetrators who fit this description is factitious disorder. If evaluation of the perpetrator reveals delusional behavior or other psychosis, factitious disorder may not be the most accurate diagnosis, and the situation is not technically one of MBP. Perpetrators who falsify medical information about a child clearly for financial gain or other material goods (for example, narcotics) probably do not have factitious disorder, but are malingering and will require intervention.As the evaluation of perpetrators becomes standard practice, we will learn more about the motives and the effective management of these cases. Reports to date reveal some consistent findings. In one study of 47 mothers, 55 percent displayed self-destructive behaviors, 72 percent had a history of somatoform disorders (psychological issues expressed through physical complaint), and 89 percent had a history of personality disorders. Twenty-six percent revealed a history of learning disorders.9EtiologyThe etiology of MBP remains the subject of debate and investigation. With more conventional child abuse, the abuser usually admits to, or an investigation reveals, a volatile temper, a lack of strategies for dealing with stress, or even a lack of attachment to the abused child. Lack of attachment often is present in MBP, especially as revealed by covert video. But in the case of MBP, perpetrators often are eager to convince the healthcare team that they are essential to the child’s well-being. In public, they may appear to treasure the relationship with the child. One author offered a thoughtful proposal about the combined forces of culture and personality that may exist for perpetrators: “Women as nurturers often associate self-worth with caring for others, especially children. If, in addition, they experience powerlessness—in family structure or in social structure, and especially if abuse is in the background—they may become MBP perpetrators as a strategy for safely but pathologically reclaiming power and self-esteem by making their role as caretaker absolutely essential.”5 Meadow found emotional abuse and neglect in the histories of 70 percent of mothers who had suffocated their children.2ManagementThe first step in management usually requires removing the child from the perpetrator. In other situations of child abuse, the extended family may provide foster care. In cases of MBP, however, more distance is the usual recommendation. Family members often are deeply incorporated in the deception and may subvert the therapeutic management.2The victim of MBP will undergo therapy based on the kind of abuse suffered. Physical and occupational therapy may be necessary to secure a healthy physical life. Psychotherapy will help the child process the confusion and pain associated with the abuse. Psychotherapy also is recommended for the perpetrator, but this therapy may be more difficult to secure. Perpetrators who continue to deny the diagnosis will often refuse treatment or deceive the therapist during sessions. In some cases, the perpetrators eventually do gain insight. The therapeutic effort to help perpetrators redefine strategies for gaining personal attention can be successful.In any event, the management plan requires collaboration of a widely multidisciplinary team. Nurses can contribute their intimate knowledge of the physical and mental health of the victim and the perpetrator. They should be prepared with thoughtful interpretations of behaviors and clinical data. This information should be well-defended by thorough documentation in the medical record.Most experts remain pessimistic about the efficacy of family reunification in the presence of MBP.5 Well-monitored visitation by parents, however, can play an important and therapeutic role. In any case, current recommendations include having a court-appointed pediatrician serve as the primary healthcare provider for the remainder of the victim’s childhood so that all medical decisions are overseen by a practitioner well-informed about MBP. It is usually recommended that the child resume normal school attendance as soon as possible.PrognosisThe prognosis for children with MBP can be good if they are removed from the family soon enough and if therapeutic intervention is aggressive. Many children are able to regain complete physical function after removal from the perpetrator. Psychological health also can be achieved. Long-term studies of survivors will shed light on the effectiveness of current management.Prognosis for the perpetrator is less optimistic.5,7 To date, therapeutic interventions have not produced uniform or predictable outcomes. Imprisonment of perpetrators is probably not a constructive response since they suffer from complicated dysfunctions, not necessarily a failure of character. We need to understand more about the dynamics of this challenging and disturbing syndrome before we can provide a better outcome for the perpetrators.Munchausen by proxy remains a complicated, challenging form of child abuse. Perpetrators violate the conventions of trusting communications between providers and clients. They defy our expectations about loving parents. Nurses play a critical role in the recognition and management of this troubling form of child abuse. An informed response will help ensure an effective and compassionate response. ReferencesAyoub, C.C., & Alexander, R. (1998). “Definitional issues in Munchausen by proxy.” APSAC Advisor, 11(1), 7-10.Meadow, R. (1977). “Munchausen syndrome by proxy: the hinterland of child abuse.” Lancet, 2(8083), 343-5Southall, D.P., et al. (1997). “Covert video recordings of life-threatening child abuse: lessons for child protection.” Pediatrics, 100(5), 735-754.Mitchell, I., et al. (1993). “Apnea and factitious illness (Munchausen syndrome) by proxy.” Pediatrics, 92(6) 810-814.Levin, A.V., & Sheridan, M.S. (Eds.). (1995). Munchausen Syndrome by Proxy: Issues in Diagnosis and Treatment. New York: Lexington Books.”Mother abused girl, Broward jury decides.” (1999, Oct. 9.). Coral Springs (Fla.) Sun-Sentinel [online]. [2000, March 1].Sanders, M.J., & Bursch, B. (2000). “Forensic assessment of illness falsification, Munchausen by proxy, and factitious disorder, NOS.” unpublished paper.Brewer, S., & Cox, C. (1998). “The legacy of Allitt.” Nursing Times, 94(30), 27-8.Bools, C.N., Neale, B. A., & Meadow, R., (1994). “Munchausen syndrome by proxy: a study of psychopathology.” Child Abuse and Neglect, 18(9), 773-788.Obtain one continuing education hour for this course, #510A, by completing this exam.