Pediatric condition falsification PCF Factitious disorder by proxy

Pediatric condition falsification (PCF) + Factitious disorder by proxy (FDP) = Munchausen syndrome by proxy (MSBP) Kenneth W Feldman, MD University of Washington School of Medicine Children’s Hospital & Regional Medical Center (Thanks to Mark Mendelow MSW for assistance)

These cases are albatrosses around your neck

Patterns of fabrication: 1) history v Cut from whole cloth or exaggeration of real, but milder disease v Normally we trust parental history v Symptoms are often of reported episodic events, usually not observed by the physician (eg seizures) v Symptoms pull our chains-demand response v Seizures, apnea, vomiting & diarrhea, fever, bleeding

Patterns of fabrication: 2) signs & symptoms Concrete, but created findings are offered to corroborate history v Bleeding-check blood type, nucleated cells, Y chromosome staining, DNA v Urinary stones-chemistry & micro v Rash v Fever, abnormal samples-do nurse observed recheck/collection v CF sputum v

Patterns of fabrication: 3) induction of symptomatic illness v Apnea-observation, covert surveillance v Vomiting & diarrhea-toxicology, oral exam v Intoxications-seizures, sedation, etc v Bleeding-lacerations, but more often with IV lines v Infections/line sepsis-recurrent, poly-microbial, unusual organisms, bugs that should be killed by antibiotic patient is receiving

Patterns of fabrication: 4) precipitation of unnecessary medical testing & intervention Diagnostic tests v Medications-eg. seizure treatment v Surgery-Nissen, gastrostomy, ENT surgery v Whatever treatment you try, will fail or cause complications v Lots medication allergies & Rx intolerances v Abuse by medical intervention-physician complicity v

Induction of psychiatric/behavioral illness in child (Pediatr 1989; 83: 57, Pediatr 2000; 105: 336) Child’s response is age appropriate v Feeding disturbances v Poor nutrition/failure to thrive v Oppositional behavior/ADD- yet compliant with medical treatment v Symbiosis with mother- home schooling, school phobia, avoidance-”tied to apron strings”, v “Mothering to death” (Arch Dis Child 1999; 80: 359) v Complicity with deceptions-child gets secondary gain v Adult Munchausen, conversion disorder, somatic illness v Adult PTSD v

Munchausen by internet v Seek social strokes/support on line v Often completely factitious (Notre Dame linebacker) v Misrepresent child’s illness v Seek perks-”Wish” programs v Seek $ v The doctors are fools”

You might think someone would need to be nuts to do this

Caretaker/perpetrator characteristics Prior medical knowledge-by training or “on the job” experience v Pressure for diagnosis & treatment v Doctor shopping- run when suspected or Dr. refuses to act v Refusal of access to prior information/records v Florid personal & family medical history v Inappropriate parent/physician boundaries-beware of flattery/gifts v Befriending/ alliances with other parents & staff- “cruise director for the ward” v Splitting of staff v Hyper-attentive, hyper-present mother v

Caretaker/perpetrator characteristics v However, the diagnosis is not made by the caretaker’s profile!

Perpetrator psychopathology Lack of nurture as child v Experience with attention gained from ill role as child v Abuse victimization as child &/or adult v Psychosis & frank dissociation infrequent v Axis II disorders-hysteria, narcissism, borderline v Mood disorders-depression v Substance abuse v Suicidality v Confrontation may cause attempt to “prove” child’s illness v

v Lasher and Feldman: The hallmark of MBP maltreatment is deception. v v v MBP perpetrators are usually accomplished deceivers and manipulators. They are typically extremely convincing and are able to give seemingly plausible reasons for any inconsistent or odd findings or personal behaviors. Schreier: the perpetrator “ gleefully ‘plays’ with the MD, controlling his actions and devaluing him by confusing him”. v When angry, may escalate induction of symptoms to act out her rage.

Getting at motivation

Parents of chronically ill children often become “difficult” v. Behaviors of survival value for child & parent can become dysfunctional & frustrate providers. They may be similar to MSBP behaviors. (Krener. AJDC 1988; 142: 945) v. Social support may vary in chronic childhood illness (Patterson. Devel & Behav Med 1997; 18: 383). v. Overprotection may result (Thomasgard Devel Behav Med 1995; 16: 244).

What happens when a parent has a chronically ill child? v v They develop feelings of competence & learn medical vocabulary from managing complex treatment regimens. Admiration from others for that competence The equilibrium in the marital system may become upset as mother’s attention shifts away from the husband onto the child Defend child from medical misadventures. v v v Depression/anxiety Lack of empathy Marital problems/social stressors, few outside supports v Attention v v v Admiration from family Admiration from community Gifts Publicity Lack of challenge from medical system

What happens when a parent has an ill child? They often receive much support and sympathy from friends and family v They may develop a close relationship with their pediatrician. They develop a new support system in the milieu of the hospital v Staff v Other parents v

Transference v. A warm, caring physician offers an intensely tempting, but ambivalently regarded ideal transference object v The physician shares the mother’s emotional space, values her opinion and admires her (countertransference) v This may be the first time the mom has ever experienced this in a relationship

The Context: Predisposing Factors A history of emotional abandonment as a child v History of childhood illness v Familial MBP or Factitious disorder v They are not simply overwhelmed & needing help v They do not look like parents who overtly abuse their children v Often fascinated with medical field v Fathers who perpetrate are often more overtly disturbed than the mothers who perpetrate v

Common Features Pathological lying v Need for an audience v Causing repeated serious harm to the infant v A compulsive need to repeat the behavior v Can focus on one, several or serial children (youngest) v Displaying excitement or some other unusual affect that is not appropriate for the situation, e. g. at a time when the child’s life may be in danger v

Psychodynamic Formulation v Schreier: the mother is “engaged in a masquerade of of mothering that springs from roots that were quietly traumatic and that include a profound absence of recognition”

Psychodynamic Formulation v The mother uses the child to forge a relationship with the physician in which lying is the primary mode of interaction v The mother becomes a “perfect” parent in a perverse, fantasized relationship with a symbolically powerful physician who represents the idealized parent for the mother 1 Schreier, “The Perversion of Mothering: Munchausen Syndrome by Proxy”

Perpetrator psychopathology Behavior speaks more strongly than MMPI v No specific psychiatric profile or test v Psychiatry can explain why & help understand treatment needs & prognosis, but can’t deny proved fabrication v Schrier-female perversion, with child as fetish objectsimulating the “good mother” v Learned means of obtaining nurture v Anger/revenge at authority figures for lack of nurture v Attention seeking occurs in multiple forums-medical, veterinary, fires, school, legal, press v

Partner issues Absent or unavailable dad v Substance abuse v Abusive relationship v “Head in the sand”-can pay amazing medical costs, without recognizing child ill v Collaborate with or facilitate abuse v Child’s illness defends/distracts from marriage dysfunction v Suicidality v

Nomenclature-it guides thinking v v v v “MSBP”-memorable/evocative-but we don’t know if we’re talking about victim or perpetrator British Working Group-”Fabrication or induction of illness in a child” Irish guidelines-”Induced illness (MSBP)”-lacks false history DSM IV-TR- “ 300. 51: Factitious disorder with physical symptoms” -only talks about perpetrator Rosenberg (CAN 2003; 27: 421)- “intent” not part of definition APSAP- Pediatric condition falsification AAP: Medical child abuse/child abuse in the medical setting 14 labels only accounted for 51% of article titles

APSAC guidelines (Child Maltreatment. 2002; 7: 105) v Define harm/abuse to child- “Pediatric Condition Falsification (PCF)”. v Define caretaker motivation to fabricate“Factitious Disorder by Proxy (FDP)”. v Differential of caretaker motivation (Child Mal. Tx 2002; 7: 160) Anxiety/vulnerable child Help seeker Delusions Malingering Allegations in divorce/custody FDP can involve sex abuse claims

Other associated motivations for FDP v Escape from adverse environment v Develop complicated social support network v Thrill of the chase-outwit authority figures & seek revenge for lack of nurture v Intellectual interest in medicine v Secondary gain (eg. malingering) can co-exist, but not be the primary motivation

Epidemiology v British Pediatric consultants– 2. 8/100 K < 1 yo, 0. 5/100 K <16 yo (Mc. Clure. Arch Dis Child 1996; 75: 57). v New Zealand Pediatric survey-2. 0/100 K < 16 yo (J Paediatr Child Health 2001; 37: 240). v Atlanta – 23 cases diagnosed by videotape in 4 years @ 165 bed tertiary care hospital (5. 75/yr) (Hall. Pediatr 2000; 105: 1305).

Outcome is poor v v v General Review (Rosenberg. CAN. 1987; 11: 547) 10/117 (8. 5%) die 20% deaths after confrontation 10 sibs died-of suspicious causes Abuse continues under observation General Review (Sheridan CAN. 2003; 27: 431) 6% die, 7. 3% long term injury 25% had dead sibs & 61% sibs with similar problems Bools (Arch Dis Child 1992; 62: 77) 29% of index children had FTT & 29% physical abuse, 39% of sibs illness falsification, 11% mortality

Outcome: Induced apnea Overlap of PCF with routine physical abuse- can’t stand crying vs seeking attention v Meadow (J Pediatr. 1990; 117: 351) 9/27 die 1/27 impaired Only 2 survivors returned to mom in two years 18/33 prior sibs die, 13 history apnea, seizures or cyanosis v Rosen (Pediatr. 1983; 71: 285) Out of normal SIDS age range (1 -12 months), repetitive spells/begin with mom-child observed later, compromised v

Case evaluation Usually no smoking gun v Doctors & legal system don’t believe v Toxicology, sample evaluation v Covert surveillance v Collect all records on child, mom & sibs-time line v Check collateral contacts-eg. day care v Insurance records as source of care information v CPS access to records (WAC 26. 44. 056. 10) v Compare caretaker reported vs actual diagnoses v Consult widely-seek proof of your “Good faith” in numbers (WAC 26. 44. 060) v

Should you do covert video-surveilance? It can prove illness induction (Southall. Pediatr 1997; 100: 735). v It can also can disprove false history (Hall. 2000). v Is it ethical? v Are you monitoring child or caretaker? v Consent for diagnosis & treatment? Private vs state facility. v Are you putting the child at risk? v If enough to monitor, you can get court trial separation v (Flannery. U Mich J Law Reform 1998; 32: 105) v Who monitors? Crawford v Wash issue?

8 month old girl with seizures & apnea Febrile seizures @ 3 months v Afebrile Sz at 9 months, EEG & MRI nl, Rx phenobarb. v Sz continued, with apnea + Sz v Nurse at outside hospital questioned seeing mom covering child’s nose & mouth, at onset of a spell. v Admitted for video EEG, then ward room observation with covert video-no events, till discharge plans discussed v Mom caught suffocating child-trying to get “Drs to pay attention” to child’s problems v Guilty plea, child no events out of her care. v

Making your legal case We’re often in a jam v Tendency to not believe possible v Get ducks in a row v Moms look good v The injury to the child is what counts v Maternal motivation/psych only for Rx/prognosis v

Protect child from further abuse by your staff v Notify all involved medical providers. v Try to limit care to through a primary care “gatekeeper” v Consider flagging record; “Concern for illness falsification, undertake diagnosis and treatment based on objective signs and symptoms. ”

Intervention v Feldman & Lasher: MBP case plans must contain elements & activities specific to MBP maltreatment v v v A court finding of facts that confirms MBP is essential to establishing an appropriate case plan that can be legally justified. Case plans contain specific and unique elements and activities that must be successfully completed prior to consideration of reunification. Without a case plan appropriate to MBP maltreatment, it is unlikely that the victim will be protected in the short and long term.

Intervention v Lasher and Rosenberg note that placement with relatives is potentially very dangerous in MBP cases v. A specialized relative evaluation process must be completed in addition to usual relative evaluation activities v Falsification often familial v Goal is to ensure there is no potential for allowing access to the child by the parent.

Treatment v There is very limited literature about long term treatment for these mothers with psychotherapy v The high level of denial is a barrier to successful treatment Of those who do enter treatment, many do it only to mollify the system and to have their children returned v Consider dual therapists-one to be reality check for primary therapist v

Good Prognostic Indicators For Success v Early admission of MBPS (may be partial) v Awareness of harm to child victim v Developing empathy for child v Belief that child's health will improve v Motivation for treatment v Intelligence

Major goals of treatment v Insight into CONTEXT of the abuse v More adaptive ways to meet one’s needs v Development of empathy

v These Professional backlash are vindictive ladies. Any attention desired. v Legal & media attention are as rewarding to them as is medical. v “A powerful & dangerous man”

Avenues for complaint/intimidation v Complaint to one’s superiors v Complaints to hospital board v State medical disciplinary board v DSHS- ombudsman, administrators, legislators, governor v Hospital/university/NIH- research impropriety v Freedom of information act

Avenues for complaint/intimidation State hospital commission v JCAH v Law suits for referring or evaluating case, slander, negligent evaluation v State “good faith” reporting immunity v Criminal liability for failure to report v DSHS Child Protection Team-unprotected v Future testimony- “You’ve been sued X times for false diagnosis. ” v When all else fails, there’s always the media v

Immunity from civil liability Previously explicitly for referring and testifying in child abuse. v “Reasonable cause to believe”/”good faith” (? who’s) v Legal precedent for evaluating mongolian spot case v “Good faith, without gross negligence cooperates in an investigation of a report” (WAC 26. 44. 060 (5) v

Review articles v Rosenberg. Web of deceit. (CAN 1987; 11: 547). v Sheridan. The deceit continues. (CAN 2003; 27: 431). v Kinscherff. Extreme MSBP: The case for termination of parental rights. (Juvenile & Family Court J. 1991: 41).