_ _ _ _-=..::AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4, 2002/1 WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS: A REVIEW OF FACTITIOUS DISORDER BYPROXY Jose R. Maldonado, M.D. FACTITIOUS DISORDER BY PROXY (FDP) Definition Factitious disorders refer to those conditions that individuals willfully create by producing signs and/or symptoms of physical or mental illness in order to assume the sick role. Formerly known as Munchausen's~by-proxy in DSM-llI-R (1), factitious disorder by proxy (FDP), in DSM~IV, is defined as the deliberate production or feigning of physical or psychological signs or symptoms in another person who is under the individua1~s care (2). Thus, in cases ofFDP, there is a perpetrator and a victim. The perpetrator is usually an adult in a position of caring for someone else in a dependent position. Usually the perpetrator is a parent or caregiver caring for a child or elderly parent or other relative. The victims are usually children at preverbal or early verbal stages of development (i.e., newborns, infants, or toddlers), but may also include elderly parents or relatives, usually a disabled or somehow dependent adult. History In 1977, Meadow (3) described the first case in the literature of with physical symptoms. In 1982, Woollcott and colleagues (4) used the phrase "doctor shopping with the child as proxy patient" to define similar cases. In 1984, Fialkov (5) described the «peregrinating pediatric patient," and in 1992, Waring (6) described the "persistent parent." Finally, in 1987, Rosenberg (7) described Munchausen syndrome-by-proxy as ~a form of child abuse wherein the mother falsifies illness in her child through simulation and/or production of illness, and presents the child for medical care, disclaiming knowledge as to the etiology ofthe problem." In 1993" Fisher and colleagues (8) described the first case of factitious disorder by proxy, involving psychiatric symptoms. Schreier and Libow (9) developed the psychodynamic formulations of Munchausen's-by-proxy in Munchausen'~by~proxy copyright 2002 American Journal of Forensic Psychiatry, Volume 23, Issue 4. The JoumaJ is a publication ofthe American CoHege of Forensic Psychiatry, P.O. Box 5870, Balboa Island, Cali fOrnia 92662. 21 MALDONADO: WHEN PARENTS DECEIVE THEIR CH~REI!~~1P~ _ _ _ _ _ _. what has become the classic text on the subject. Meadow (10) and Schreier (11) both reported on cases where mothers made false accusations of sexual abuse in which the usual dynamics of FDP were noted. Even though the diagnosis of Munchausen-by-proxy was included in the formal diagnostic criteria of DSM-m-R (1), it has now been removed by DSM-IV from the factitious disorder section and placed in Appendix S, "Criteria Sets and Axes Provided for Further Study", under the name factitious disorder by proxy (2, pp.725-727). Clinical Features In cases of FDP, there is a perpetrator and a victim. The perpetrator is usually .an adult in a position of caring for .someone else. Usually this is a parent, caregiver, babysitter, or other relative caring for a child or an elderly or disabled parent or relative. The perpetrator usually appears to be a loving and concerned caregiver and is creative in their induction and report of symptoms. Often perpetrators are medically sophisticated or at least somewhat knowledgeable of medical issues. A child's mother is the perpetrator in 98% of the cases. Rosenberg (7) examined 117 reported cases in the- literature and found that nearly aU perpetrators of MSBP were the mothers of the victims. It has been estimated that 27% ofmothers involved in .the creation of FDP were nurses .(having fonnal medical .training .and access to medical paraphernalia (7, 12). There was also a high incidence of mothers presenting false claims of having completed nursing related training (7). Infrequently, some adults in positions of care (e.g., nurses, paramedics) may factitiously create symptoms in non-related adults or children (13-16). The victims are usually children at preverbal or early verbal stages of development (Le., newborns, infant, or toddlers). Adolescents and dependent elderly adults (e.g., a demented parent) are victims in a smaller number of cases. Young victims of FDP are at increased risk for either later development of FD in themselves or for later becoming the ill-inducing parent (FDP perpetrator) (17). Libow (18) reported that a review of the literature of the past 30 years found 42 cases of illness falsification by children. Her sample did not clearly differentiate between children who were coached by their parents versus cases in which the parents created the symptoms with little· conscious participation from the victim. In her sample, the mean age of the children was 13.9 years, with a range from 8 to 18 years. In this sample. the majority of patients were female (71%). She noted that the gender imbalance was greater for cases involving older clilldren. The mean duration of falsification before detection was almost 16 months. AMERICAN JOURNAl OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4. 200213 Even though most published reports on FDP suggest that the perpetrator is nearly always the child's mother, cases have also been reported in which the father was actively involved in the abuse. Confimring the rare instance of fathers causing factitious illness, Meadow (19) reported on 15 cases he encountered in 20 years of practice. In nine ofthe 15 families, the index child or siblings had incurred false apnea or seizures in association with smothering. The father was the person who witnessed the events, who was present at and/or involved in their initiation, and/or was involved in resuscitation procedures. All the children had had the usual range of investigations seeking cause for bouts of apnea, without a natural cause being found. Two fathers were observed by staff to be smothering their child in a hospital. two other smothering incidents were revealed by covert video surveillance (CVS), and another three confessed to smothering their child in the course of criminal proceedings. It was uot known how many times the reported episodes of apnea were merely falsifications, rather than true episodes of smothering. Two children had incurred repetitive poisoning, one had blood smeared about his body and in his samples to simulate bleeding, two suffered from reports of fictitious epilepsy, one had factitious gastrointestinal problems and two bad factitiously caused fractures. In Meadow's sample (19), the fathers were of average or above average intelligence and had attended schools or postgraduate training. Interestingly, none had regular employment or had been in long-term employment before. In fact, five were receiving a disability allowance. Six of the fathers had been previously examined by psychiatrists, who had not identified mental illness but had commented on features such as "hypochondriacal nature," "aggressive personality," "hysterical amnesia," "neurotic panic attacks,., and "personality disorder with schizoid features." The study suggested that the degree of direct physical harm and the chance of death were high in those families in which the father was the petpetrator. Eleven children (73%) died and another six survived repetitive smothering or poisoning. In the men displaying features of FDP, it was common to find that they had previously suffered from bouts of personal false illness behavior which had gone into remission at the time that they were inventing or causing false illness in their child, and then re-emerged when the child was healthy or dead. The fathers also had a history of multiple personal catastrophes (e.g., home fires, being a victim of burglary), acts of heroism (e.g., having a child abducted by a stranger who was subsequently rescued by father) or tremendous personal achievement. Even though, as a group, these fathers took a prominent role in the care of the child, they were perceived by the hospital staff as being overly demanding, overbearing, and unreasonable and were quick to make formal complaints and to seek legal redress for the 41 MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS perceived failure of the health care system to provide either satisfactory service or care for their child. Modes of Presentation As in cases of FD, FDP perpetrators may create a factitious scenario by either falsely reporting .a child's medical histOlY, surreptitiously simulating medical symptoms, or surreptitiously inducing symptoms. Any of these patterns generates a response from medical practitioners, initiating a cycle of inappropriate invasive testing and treatment and further simulation of illness. Invasive diagnostic tests and inappropriate therapeutic procedures usually result in extended hospitalizatious. Worse yet, they often create iatrogenic illnesses or processes, which perpetuate the cycle of factitious symptoms, illness behavior and further testing. This in turn validates and compounds the pattern initiated by the perpetrator, which further enhances the perpetrator's role as caretaker. By unknowingly engaging in this cycle, physicians become the parent's unwitting accomplices, fulfilling the parent's pathologic wish for sympathy and attention. In fact, several authors (20-26) have suggested that by virtue ofeagerness top.erform .diagnostic tests, failnre to obtain an .adequate history, and a low threshold to treat these conditions, physicians and nurses are accomplices in the exacerbation and perpetuation of FDP. Donald (20) argues that, "medical interest and active participation with the child and parentes) through the investigative and diagnostic process is the crucial factor in the maintenance of the [FDP] syndrome." Methods of Illness/Symptom Induction The methods of symptom induction used by FDP perpetrators are in many ways similar to those utilized by adult patients suffering from factitious disorder. As a rule, these include altering laboratory test results, (e.g., tainting laboratory samples or specimens with bacteria or blood), injecting or otherwise administering poisons or medications (e.g., injecting insulin to cause seizures or hypoglycemia, force feeding emetics or cathartics to create gastrointestinal symptoms, anticholinergic poisoning to cause mental status changes [27], or adding sodium to formula to induce seizures), irritating the child's skin with abrasive products (to create dermatitis), starving or dehydrating infants leading to failure-to-thrive (28, 29), suffocating children .mtached toc.a;rdiorespjratorymonitors to mimic infantile .apnea (30, 31), or directly infecting infants or children to create infectious processes (e.g., introducing fecal material into a child's urethra), preventing the healing of a natural or accidentally occurring event (e.g., contaminating or re-iqjuring AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4,2002/5 ,I!,..._,.:.......-;.",."...,.... ~~ .... ;"""'"'.'"'"~ ". H-'--~'- "'.~-"" A. superficial wounds to prevent adequate healing. re-fracturing broken bones). reporting psychological or behavioral symptoms (e.g., reporting tics, "petit mal" seizure activity, developmental disability, dissociative symptoms) (32). or reporting a false histOIY of a troubled past (e.g., sexual or physical abuse or neglect) (33. 34). The most common physical presentations are bleeding (44%), seizures (42%). eNS depression (190AI), apnea (15%), diarrhea (11%), vomiting (10%), fevers (10%), and rash (9%) (7, 24, 35). The most common psychiatric presentations are autistic-like symptoms, psychotic disorders, dissociative symptoms, reports of physical or sexual abuse, learning disabilities, attention deficit-like" symptoms, chronic fatigue syndrome, temporal lobe epilepsy with rages, and Tourette's symptoms (24,35). In rare occasions, expectant mothers have been known to induce factitious disorder by proxy in their unborn child. The most likely method of injmy is the self injection of contaminant material into the amniotic fluid with the intention of causing an infection (36-38). In Rosenberg's (7) sample the most common presentations were bleeding, seizures, central nervous system depression, apnea, diarrhea, vomiting, fever, and rash. Failure to thrive was associated with FDP in 14% of cases. The short-term morbidity rate was 100%, with a long-term morbidity rate estimated at 8% and a mortality rate of 9%. In Bools' study (39) of psychopathology of FDP mothers, they found that approximately one-half of the mothers in their sample had either smothered or poisoned their child as part of their fabrications. Of note, 20% of the mothers had a forensic history independent of convictions related to child abuse. In Libow's study (18) ofchildren presenting with factitiously created physical symptoms, the most commonly reported falsified or induced conditions were fevers, ketoacidosis, purpura, and infections, and the fabrications ranged from false symptom-reporting to active injections, bruising, and ingestions. Characteristic Behaviors Typical of FOP Perpetrators Perpetrators often present as the "ideal" concerned parent. Usually, they are inseparable from their hospitalized child. As a rule, perpetrators insist on being an integral part of the treatment process, usually developing close relationships to hospital staff. Their devotion often misleads the staff, thus minimizing and delaying suspiciousness of their illness-generating behavior. and thus preventing timely and adequate diagnosis and appropriate intervention. In a study of the psychopathology of perpetrators, Bools and colleagues (39) studied 47 FDP mothers. A clear psychiatric picture was not evident in 61 MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS any of them. Nevertheless. it appeared that at some time in their lives, 34 (nearly 80%) of the mothers had suffered from "factitious disorder with physical symptoms" or somatoform disorder. There had also been many reports of "somatization disorders." Furthermore, 26 (55%) of the mothers (perpetrators) bad a history of self-harm, and 10 (21%) had a history of substance abuse. Regarding their characterological makeup, 36% (17 of 47) had a history of a personality disorder, predominantly histrionic and borderline types. Most subjects met the criteria for more than one category of personality disorder. Perpetrators appear to be compliant with the medical team, but they tend to be very controlling. FDP perpetrators usually insist that medical personnel vigorously pursue medical intervention, often suggesting and even insisting on obtaining invasive tests and diagnostic procedures, even when the yield appears low and the risk high. In fact, perpetrators are usually less anxious than the medical staff about the victim's lack of response to medical treatment, or the possible dangers or adverse effects of tests, procedures or medical treatment. Perpetrators have a tendency to continuously change physicians until the desired medical response is obtained. They may even praise and console physicians struggling to treat the perplexing illness afflicting the patient, especially when the condition fails to respond to treatment. When they are somehow excluded as part of the treatment plan or their reports are questioned, perpetrators are quick to accuse physicians and other medical personnel of incompetence or of failing to recognize the severity of the medical problem. In fact, when physicians are unwilling to escalate the diagnostic efforts or the management plan, perpetrators are quick to request a second opinion, change doctors, or seek treatment at a different facility. As a consequence, a high incidence of AMA discharges (64%) has been reported . in suspected and confinned cases of factitious disorder by proxy. This is an extraordinarily high number, compared to 8% in a matched, comparable population (40). The presumed goal of the induced symptoms is for the perpetrator to vicariously assume the "sick role" through the sick child. Schreier (24) has described the perpetrator as having "a perverse need to be in an ambivalently dependentlbostile, controlling relationship with a physician or powerful public figure." He further postulates, "the motivation usually goes beyond simple attention-seeking. These relations are seen as an attempt to avenge and repair past perceived or real humiliations of childhood through an elaborate scheme that is doomed by its very nature to failure. As a consequence, there is a corresponding mobilization of interest and support of physicians, nurses, AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4, 200211 social workers, other family members and the community at large. As in the case of FD in general, and unlike malingering, there are no external financial incentives. Schreier and Libow (9) have suggested that mothers who induce factitious symptoms in older children are more disturbed than mothers who produce symptoms in infants. In the case of children who create factitious symptoms (with or without parental assistance) their personalities-described as bland, depressed, and fascinated with health care-are remarkably similar to adults with factitious disorders (18). Sometimes adults in positions of care (e.g., babysitters, elderly caretakers, nurses and paramedics) may factitiously create symptoms in non related adults or children (9, 13-16, 4143). The first recorded case of factitious disorder by proxy caused by a nurse in a patient under her care occurred in 1974 (44). Yorker (43) suggests that epidemics of factitious behavior have been recorded in hospitals throughout the world about every one and a half years. Registered nurses are the largest single group of caregiver professionals known to have produced factitious (by proxy) damage to their unwitting patients (45). Diagnostic Problems The flIst and perhaps most difficult barrier to overcome is the disbelief that FDP may be occurring at all. Medical and mental health professionals often disagree with each other about the possibility of factitious presentation. Similarly, child protective service workers and the courts often find it too preposterous to believe. Due to the lengthy and complex behavior perpetrators engage in to create the factitious symptoms, it is usually an average of 15 months after initial presentation before the possibility of factitious disorder by proxy is contemplated (7). Unfortunately, because of frequent reluctance to act without enough grounds or proof, and frequent inability to believe a caretaker could cause damage to a loved one, there is the possibility of ongoing abuse during the hospital stay that is intended to diagnose or treat the condition. When the condition is finally recognized as a potential FDP case, the medical and nursing staffs reaction is to feel betrayed, resentful, angry, and more suspicious, and conversely less trustful of parents in general (46, 47). Even when the diagnosis is appropriately and timely considered, the legal system may prevent prompt intervention. The courts and the general public are suspicious of medical personnel's interpretation of circumstantial evidence incriminating parents and caretakers as the causative agents of the patients' illnesses, sometimes fearing that this may be a plot to cover the doctors inability to treat the condition or outright incompetence. Similarly, hospital administrators and physicians are worried 81 MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS about the potential liability and associated malpractice suits that such a diagnosis may open the institution to (48). Even when there is credible evidence to suggest the possibility of FDP, diagnostic evidence that satisfies the medical standard may often fail to meet the greater degree of proof required in criminal prosecution. So, even when the courts acknowledge there may be some validity to the charges, they fail to convict based on a lack of sufficient evidence. The issues of abuse, neglect and "good enough parenting skills" are usually raised in these cases. The usefulness of removing a child from the custody of the potential perpetrator and placing the child in a foster home for protection has been questioned. The unwillingness of social services or the court to separate the child from the perpetrator may fail to provide long-term safety. The unwillingness or inability to intervene and request mandatory psychiatric treatment or interventions may also result in failure to protect the child from future abuse. There are a number of factors that make FDP a difficult condition to diagnose. One of the most significant blocks to diagnosis is the lack of awareness. The index of suspicion changes depending on who is caring for the FDP victim. By far, studies suggest that pediatricians are much better at identifYing the signs of FDP and are more prompt in making the diagnosis than are family practitioners (49). Similarly, psychiatrists (96%) are better than psychologists (69%) or social workers (42%) in making the diagnosis (50). Second, there is the fear in the physician that in making the diagnosis of FDP, with its implications (such as reporting the case to the appropriate social service agencies for potential abuse and its consequences [e.g., removal of the victim from 'the household]), the child and his/her family may be subjected to unnecessary discomfort and risk. Third, it is very difficult for most hea1thcare providers to believe or suspect that the loving parent who is bringing their child to them for care could indeed be the perpetrator of such abuse (51). Finally, there is always the possibility that the symptoms presented may represent a legitimate, but uncommon illness that will go on to be diagnosed by others if they don't do everything possible to diagnose it properly. There are a number of warning signs associated with factitious disorder by proxy cases. FDP should be suspected when the presenting symptoms and the illness process is extremely unusual or difficult to explain physiologically (e.g., cases of multiple bacterial strains colonizing a single wound or abscess), repeated hospitalizations and work-ups fail to reveal a conclusive diagnosis or etiology, physiologic parameters are consistent with induced illness (e.g., presence of drugs or medications in toxicology screening), or when a patient fails to respond to appropriate treatments. FDP should also be suspected when the patient's health is inconsistent with laboratory findings AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4, 2002/9 (e.g., the patients weight and electrolytes are completely notmal even though the mother reported a history of "over 20 episodes ofvomiting a day over the course ofthe last five days"). Often, the FDP perpetrator (usually the mother) appears less concerned than the medical staff about the doctor's inability to identifY the cause of the illness (52). Commonly, the perpetrator appears to thrive in the hospital setting and often becomes unusually close to the staff. Usually the perpetrator refuses to go home, insisting on caring for the patient herself and rarely leaving the child's side while on the ward (12t 52, 53). It is almost always the case that the perpetrator is the only witness to the onset of signs and symptoms (e.g., seizures, apnea). When the mother is the perpetrator, the father is rarely seen in the hospital and appears uninvolved in the case. A careful review of the immediate family medical history usually reveals that either the patient's mother or other children in the house suffer from unexplained diseases or there is a history of unexplained death of another child in the family. Often the perpetrator has a medical background (e.g., nurse, paramedic, physician, phlebotomist. physician's assistant or medical office personnel). Often the perpetrator has had exposure to models of the illness afflicting the child (e.g., having cared for a family member who had the condition she now recreates in the child). The perpetrator often welcomes or even suggests invasive and painful procedures with the stated purpose of diagnosing or treating the condition. As in cases of FD, the primary clue in FOP is a description presented by the mother that does not make clinical sense. Usually this is noted only after careful examination of the records and lengthy follow-up of the case. Unfortunately, the mother usually prevents the timely collection of necessary data by not providing or by falsifYing records, or by not providing timely consent for medical personnel to obtain necessary records and communicate with important sources ofinfotmation. Unfortunately, important data may not be available until after a FOP case is already uncovered or there is a tragic outcome. The perpetrator usually becomes defensive if the infOtmation she provides is questioned or parental lying is proven (4, 54) and usually becomes anxious if the child improves. Masterson and colleagues (55) describe how an initial good rapport between doctor and caregiver changes into a conflict between the perpetrator and medical staff as organic causes for the illness are eliminated. Despite their unusual interest and knowledge ofthe case, past medications and tests perfOtmed "at previous hospitals" or "by a prior physician," perpetrators often report that medical records are missing or have been lost or that the original physician has moved, died or since retired. 10 I MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS Finally, clinical observation yields infonnation that is inconsistent with the perpetrator's report. One of the most important clues to suggest FDP is when the reported signs and symptoms disappear when the mother is removed from the environment or the child is removed from her care. Morbidity and Mortality About 8% of FDP victims experience a protracted period of morbidity (7). In cases where children remain under the custody of the perpetrator there is a risk of further fabrication (9%) and of long-term effects (20%) of ongoing or original abuse (e.g., school absences, behavioral problems, impaired concentration) (56). When these children reach adolescence, they often exhibit symptoms of persistent insecurity, posttranmatic stress disorder like symptoms, occasional deficits in reality testing, and avoidance of needed medical testing or procedures (57). While death is rarely associated with adult FD, the mortality rate in FDP infants and small children may be as high as 9% (7, 9). The mortality rate is even higher (55%) in older children and adolescents (7, 58). When death occurs, it is usually due to miscalculation of damage (e.g., too much toxin/poison, extended airway obstruction), the result of a prolonged condition or the effects of repeated assanlt, or iatrogenic complications (e.g., damage caused by the procedures or medical interventions initially intended to diagnose or treat the condition). Differential Diagnosis The differential diagnosis of FDP includes overanxious, usually first time parents who anxiously bring their children to the emergency department inadvertently exaggerating symptoms, thus exposing their children to unnecessary diagnostic tests and complications, as well as parents of children recovering from a crisis (e.g., premature birth). In some cases, parents have been known to exaggerate symptoms or factitiously create additional symptoms in order to obtain attention for symptoms that may have been of concern to the parents but did not impress physicians during a previous presentation. Other conditions to consider may include the discontinuation of treatment by caretakers due to concerns regarding treatment side effects thus causing exacerbations of symptoms, relapse of the initial condition, or a new set of symptoms. It is also important to consider the possibility that the parents may not be the perpetrators ofthe child's symptoms, but an older sibling may be. Finally, it is important to always consider the possibility that the inexplicable symptoms may indeed represent a true, but rare, medical disorder. AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4,2002/11 Ethical and Legal Issues While factitious disorder is considered a psychiatric condition, FDP is a criminal act, constituting child or elder abuse, depending on the age of the victim. As such, there are legal reporting requirements in cases of child or elder abuse, which supersede all and any claims to confidentiality insofar as the report is reasonable and made in good faith. When the condition is suspected and a report is to be moo, physicians must carefully document all laboratory testing, positive and negative pertinent signs and symptoms, conversations with caregivers and family, and all circumstantial evidence essential to prove the case or used to arrive at the suspicion or conclusion. When a case of FDP is suspected, the primary responsibility is to protect the rights and safety of the child while preventing further abuse. Once FDP is considered, physicians and other medical personnel should meet, share data and gather information, and express concerns with all members of the treating team in an effort to either confirm the suspicion or absolve the parents of culpability. In these cases, FDP should be included in the differential diagnosis, steps should be taken to ensure that the child is not exposed to further trauma from either the perpetrator or medical personnel (e.g., iatrogenic damage), and that only necessary tests or procedures needed to confirm or eliminate suspicions or correct damage already caused (iatrogenically or by the perpetrator) should be performed. Many have advocated the use of covert surveillance methods in cases of suspected factitious disorder by proxy. Despite the controversies surrounding the use of covert surveillance and monitoring due to issues of privacy and confidentiality, given that the safety and life of defenseless children is at stake, the argument for its use without parental permission is more compelling, but the issue is still equally difficult. In fact, there have been many reports of instances in which hidden video cameras have provided the necessary evidence to successfully prosecute an FDP perpetrator (17,30,31, 59-62). Certain jurisdictions may allow for the use of such tactics, though often in coordination with local legal authorities who secure the court's permission. Before one gets involved with the use of covert video monitoring of a suspected factitious case, the matter should first be discussed with hospital counsel, ethicist(s), risk management, and all members ofthe treating team. In a study by Southall and colleagues (63), 39 children referred for investigation of apparent life-threatening events (ALTE) in which induced illness was suspected were followed using covert video surveillance (CVS). In the sample, CVS revealed abuse in 33 of 39 suspected cases, with documentation of intentional suffocation observed in 30 patients. Poisonings 121 MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS (with disinfectant or anticonvulsant), a deliberate fracture, and other emotional and physical abuse were also identified under surveillance. The use of CVS helped understand other symptoms presented by the perpetrators. Bleeding from the nose and/or mouth was reported in 11 of the 38 patients with ALTE undergoing CVS. Four patients who had been subjected to recurrent suffocation before CVS had developed permanent neurological deficits and/or required anticonvulsant therapy for epileptic seizures resulting from hypoxic cerebral injury. The 39 patients undergoing CVS had 41 siblings, 12 of whom had previously died suddenly and unexpectedly. Eleven of the deaths had been classified as sudden infant death syndrome but after CVS, four parents admitted to suffocating eight of these siblings. One additional sibling who had died suddenly with rotavirus gastroenteritis was reinvestigated after CVS of her sister revealed poisoning, and-death was found to be cansed by deliberate salt poisoning. Twenty~three of the abusive parents were diagnosed by a psychiatrist as having personality disorders. Yorker (64) suggests that a sentence added to the consent form signed by the patient's parents upon admission for treatment, indicating that "I consent to the taking and publishing of stin or motion pictures of the patient's diagnosis and treatment, and to closed circuit monitoring of patient care for educational or clinical pmposes unless I request otherwise" may provide the necessary consent for the use of covert video surveillance. Treatment, Management and Outcome A successful and comprehensive management plan usually involves the confrontation and discussion of the factitious behavior with the perpetrator, other family members and medical personnel, and pertinent social service personnel. This is one of the most difficult issues in the treatment plan. If confrontation occurs too early, before the suspicions are validated and there is enough evidence to prosecute or at least justify the removal of the child from the injurious environment, the parent/perpetrator may remove the child from the hospital and flee, leaving physicians with too little data upon which child protective services (CPS) and legal authorities can build a case. On the other hand, if the verification period is extended in order to gather adequate data, the safety of the child may be compromised. Prior to confronting the suspected perpetrator, a multidisciplinary team should be created to study and address the problem. Its pmpose is to share information about the suspected FDP and to develop a management plan that serves the best interest of the child. The team should include members of various aspects of the treatment staff and at a minimum should include the primary care physician, a consulting psychiatrist, a representative from each AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4, 2002/13 of the involved consulting teams (i.e., gastroenterology, infectious diseases, neurology), a representative from the nursing stafI: an ethicist, and a representative from the social service department, as well as risk management The team's mission is to determine the degree of concern with respect to the child's safety while in the hospital, what forensic evidence must be gathered in order to prosecute the case, what amount of delay may be legally provided before confronting parents or suspected perpetrator(s) in order to procure the necessary data, and the ethical and legal dilemmas of covert surveillance methods in order to confrrm the abuse and protect the child (50). Whether the physician has the right to remove a child from a suspected perpetrator, perform tests, or place surveillance cameras to document the abuse depends on the individual state's or jurisdiction's mandatory reporting laws for abuse. On the other hand, there is a federal mandate in all 50 states to report all cases of child abuse to the appropriate child protective service agency. Once the team has gathered all the pertinent information, the appropriate agency (e.g., CPS) must be notified and a report filed. Usually, the parents, including the perpetrator, must be notified within 24 hours after having filed a report with CPS. Once this has been done; it may be impossible to gather any further data regarding ongoing abuse. Before the confrontation takes place, a hold order, facilitated by local authorities or child protective services, should be in place to prevent the parents from removing the child from the hospital. CPS must coordinate custody arrangements. As in the case of FD, the primary physician must direct the confrontation. It is often useful for other members of the team to be present, but this should only include medical staff. That is, administrative personnel, although useful in the planning stages, should not be directly involved in the treatment phase. During the confrontation, the primary physician explains the findings and explains the steps that have been taken in order to ensure the safety of the child (e.g., notification to CPS). Other team members present during the intervention are welcome to echo the decision and reinforce the need for treatment of both the victim and the perpetrator. The psychiatric consultant should be available to offer counseling and initiate an evaluation ofthe family system after the confrontation. The primary goal of management is the protection of the child. Data suggest that the efficacy of therapeutic intervention with the perpetrator is discouraging, especially in the case of parents who deny culpability. In most cases, the child's safety can only be ensured by removing the child from the home. Usually, reunification of families should be undertaken only if the child's continued safety can be guaranteed. 141 MALDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS The treabnent of the victim usually begins with the removal from the abusive home and placement in a custodial situation that will ensure safety. A pediatrician with knowledge about FDP should become the court-mandated gatekeeper of the child's health care needs. The following steps are directed at addressing the physical problems created by the perpetrator's factitious behavior as well as at the need for psychiatric evaluation. Often, removal from the abusive environment results in immediate improvement of the child and little additional treabnent is needed to correct ongoing medical problems. Unfortunately, in some instances permanent damage may have been inflicted by the factitious behavior and further medical treatment may be required. It is recommended that the most conservative treatment plan be followed. Further invasive procedures and surgery should be avoided and performed only if absolutely needed. The need and intensity for psychiatric treabnent will depend on the age of the victim and their level of awareness of the situation. In newborn and other small children there may be little need for immediate intervention, although this may be necessmy later to explain why they were removed from their family. In the case of older children or adolescents, intensive psychiatric intervention is usually needed. The victims are usually pathologically enmeshed and dependent on the perpetrator/caregiver and usually report disbelief on the physician's claims of harm. In fact, not uncommonly, the older child may express disbelief or denial and experience profound sadness or depression when removed from the perpetrator's care. As discussed above, FDP victims may go on to develop FD themselves and/or become the perpetrators of FDP in their children. Part of the psychiatric intervention is directed at preventing this behavior from developing in the future. These children may also develop multiple somatic preoccupations in older life, including any form of somatoform disorder, after having learned to obtain attention and love via somatic symptoms. This too needs to be addressed. The treatment of the perpetrator is more difficult. As mentioned before, FDP perpetrators are not considered patients, but criminals. Nevertheless, they may indeed suffer from any nwnber ofpsychiatric conditions. Ifpresent, these should be identified and treated; In most known cases of FDP, psychosis or other significant form of mental illness has not been identified. In fact, to date, mental illness has not been successfully used to excuse from culpability in any case of FDP. Thus, the most significant intervention may be preventing them from causing further damage to the identified victim or new victims. Because some time may pass before the perpetrator is brought to justice, shelhe may be allowed to return home. Periodic audits ofthe health AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4,2002/15 status of other children (e.g., siblings of the FDP victim) who have remained in the custody of the mother or any child born after the removal of the index child must be perfonned for an extended period, given the pervasiveness of the perpetrator's behavior and .the ongoing vulnerability ofthe children. Bools and colleagues (56) followed 54 children for a mean of 6 years after the fabrication of illness had been identified. Of these, 30 (55%) of the children were living with their biological mothers and 24 were with other. family members or in foster homes. Of those living with their mothers, further fabrications were identified in 10 children (33%), and there were "other concerns" in an additional eight (26%) cases. That is, there was suspicion or confinnation of further illness fabrication or abuse in 59% ofthe cases returned to the care of the original perpetrator. About 50% of all children followed were diagnosed with a variety of psYchiatric conditions, including conduct and emotional disorders as well as problems related to school, including difficulties in attention, concentration and non-attendance. Overall, 49% of those successfully followed bad outcomes that were considered to be unacceptable. Berg and Jones (65) followed a total of 17 children suspected of suffering from FDP. Follow-up infonnation was obtained from general pmctitioners and social workers. About half of the subjects and caregivers were interviewed. They found that all patients were at the severe end of the abuse spectrum. Twelve cases involved direct induction of illness, one involved tampering with samples to mimic illness, and four involved sYWptom fabrication. The biological mother was the abuser in 100% of the cases. In 13 of the 17 cases, patients were hospitalized for assessment (and treatment) to decide whether family reunification was viable. Those admitted to the family unit were selected on the basis of the likelihood of successful intervention. Many more were seen in the outpatient clinic but were considered unsuitable for psYchiatric treatment-usually because of persistent parental denial or the severity of the perpetrator's personality disorder. Admission to the unit was offered in cases where the perpetrator showed a degree of acknowledgement of the nature of the problem, and where the team considered that psYchological treatment was possible. The presence of personality strengths was considered an optimistic prognostic sign. Other family members or friends were asked to assist in the treatment process, which was comprised of psYchological assessments and interventions targeted at the parent-child relationship, the quality of the child's attachment to each parent, the abuser's own childhood experiences, and the current social network and family dynamics, together with work with the parental couple, as well as intensive liaison work with key professionals from the family's local area. Following discharge, most families were followed for a mean of 27 161 MAlDONADO: WHEN PARENTS DECEIVE THEIR CHILDREN'S DOCTORS months. Of the 13 treatment cases, 10 were reunited with parents after a mean of 7 112 weeks' admission, whereas three were discharged to out foster homes. The results suggest there was a further episode of induced illness in one of the reunited children. Although some mothers had continuing mental health difficulties, only one of the other reunited cases had appreciable parent-child relationship difficulties (not requiring referral to psychiatric services). The children did well in their development. growth, and adjustment. suggesting that in vel)' selected and adequately screened cases, family reunification is feasible, but long-term follow-up is necessaI)' to ensure the child's safety and to identity deterioration in parent's mental health. Meadow (66) studied the health and social service records of 81 children judged by criminal and family courts to have been killed by their parents. He discovered that, initially, 42 (52%) children had been certified as dying from sudden infant death syndrome (SIDS), and 29 (36%) were given another cause of natural death. In 24 families, where more than one child died, 58 (72%) died before the age of 6 months and most died in the afternoon or . evening. Seventy percent had experienced unexplained illnesses, with over half having been admitted to the hospital within the previous month. Furthermore, 15 (19%) died within 24 hours ofhaving been discharged. Most patients came from disadvantaged or low-income families, and most received income support. Half of the perpetrators had a history of somatization or factitious disorder themselves. Death was usually by smothering, with up to 43% of children having bruises, petechiae, or blood on the face at autopsy examination. In the case of children who create their own factitious symptoms, many admit to their deceptions when confronted, and some have positive outcomes when appropriate treatment is provided (18). In October 2000, a Florida circuit court jury found 42-year-old Kathy Bush guilty ofaggravated child abuse and Medicaid fraud after a three month trial. She had been charged of fabricating illnesses in her 12-year-old daughter, Jennifer, in an attempt to gain attention and sympathy for herself Because of the deceitful behavior that Mrs. Bush used to create her daughter's symptoms, the victim was hospitalized 200 times and underwent about 40 operations, including removal of her gall bladder, appendix and a portion of her intestines. The state of Florida had been involved in the case years earlier and had removed Jennifer from the custody of her mother in Apri11996. Since her custody was taken over by the state, Jennifer had not AMERICAN JOURNAL OF FORENSIC PSYCHIATRY, VOLUME 23, ISSUE 4,2002/17 been hospitalized. Yorker (64) provides an excellent summary of other pertinent legal cases offactitious disorder by proxy and their outcomes. Some patients with factitious disorder and factitious disorder by proxy initiate lawsuits (17, 67). There are several scenarios associated with malpractice liability. The first of these scenarios includes denial of factitious behavior and subsequent suing of the physician, accusing himlher of factitious behavior, for defamation. The second scenario involves the issue of negligence, that is, the physician's inability or failure to consider and/or identifY the factitious behavior as part of the differential diagnosis. Thus, the claim would be that unneeded procedures should have been avoided by an astute clinician. Usually, these follow complications associated with unnecessary diagnostic tests or procedures. 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Journal of the American Academy of Child & Adolescent Psychiatry. 36(1):112-115, 1997 Ostfeld B, Feldman MD. Factitious disorder by proxy: awareness among mental health practitioners. Oen Hosp Psychiatry 18: 113-116, 1996a PoweU R, Boast N. The million doUar man: resource implications for chronic Munchausen's syndrome. Br J Psychiatry 162:253-256, 1993 World Medical Association: Declaration of Geneva, reprinted in Ethics in Medicine: Historical Perspectives and Contemporary Concerns. Reiser 81, Dyck AJ, Curran WL (Eds.). Cambridge, MA, MIT Press, 1977 ABOUT THE AUTHOR Jose R. Maldonado, M.D. is an Assistant Professor and Chief of the Medical and Forensic Psychiatry Section in the Department of Psychiatry and Behavioral Sciences at Stanford University. He is the Medical Director of the ConsultationILiaison Psychiatry Service and co-Chair of the Ethics Committee, Stanford University Hospital; and Director of the Medical Psychotherapy Clinic, Stanford University School of Medicine, Stanford, California. Dr. Maldonado was the 2001 recipient of the Teacher of the Year Award, presented at the 14th U.S. Psychiatric and Mental Health Congress in Boston, Massachusetts.
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