A P ractical But N ever E asy A pproach to Navigating These P atient Encounters Anne Beasley MD Advocate Childrens Hospital Chicago IL Jodi Carter MD Phoenix Childrens Hospital Phoenix AZ ID: 917669
Download Presentation The PPT/PDF document "Challenging Patients & Families – ..." is the property of its rightful owner. Permission is granted to download and print the materials on this web site for personal, non-commercial use only, and to display it on your personal computer provided you do not modify the materials and that you retain all copyright notices contained in the materials. By downloading content from our website, you accept the terms of this agreement.
Slide1
Challenging Patients & Families – MSBP, Medical Child Abuse, and Care Giver Fabricated Illness in a Child: A Practical (But Never Easy) Approach to Navigating These Patient Encounters
Anne Beasley, MD, Advocate
Children’s Hospital,
Chicago, IL
Jodi Carter, MD, Phoenix Children’s Hospital, Phoenix, AZ
Kelly Kelleher, MD, Phoenix Children’s Hospital, Phoenix, AZ
Slide2DisclosuresWe have no relevant financial relationships with the manufacturers(s) of any commercial products(s) and/or provider of commercial services discussed in this CME activity. We do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.
Slide3https://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html
Slide4Who Are These Patients?Non-specific medical diagnosesExamples:Mitochondrial DisordersSeizuresHypogammaglobulinemiaBehavior ComponentNon-Pulmonary Cystic FibrosisApneaGI DysmotilityVomiting
Regurgitation
Constipation
Slide5ObjectivesReview recent literature and terminology related to challenging patient encounters, MSBP, medical child abuse and caregiver fabricated illness in a child.Share patient case examples identifying elements that have been successful and, equally as important, unsuccessful encounters.Discuss a practical approach to forming a Complex Care Committee including members of the committee and their role.Discuss legal issues and concerns regarding removal of a child with caregiver fabricated illness from a guardian’s custody.
Slide6AgendaBreak into small groups (15 min) Patient presentation/discussionReturn to large group (20 min)Review literature Discuss Complex Care Committee conceptSmall Group (15 min)Develop a treatment approach for your patientLarge Group (25 minutes)Common pitfallsHow to translate to your home institution
Available resources
Slide7DisclaimerAge, gender and dates have been altered in each case
Slide8Case 112 yo female with autism, MTHFR gene mutation, lead poisoning and mitochondrial disorder admitted for HSP and abdominal painFamily has recently relocated from out of stateAfter admission, pt’s parents request an immune work up and mention that pt’s four younger siblings have functional antibody deficiency, autism, mitochondrial disorder and MTHFR gene mutation for which they receive multiple services and take multiple medications.Patient’s neurologic and developmental exam is completely normal. Patient is articulate, makes good eye contact and follows directions well.
Slide9Case 27-yr-old female with constipation6 hospitalizations in 3 months for constipation
Slide10Case 38 and 10 year old sistersBoth carried tentative diagnoses of Mitochondrial Disorder NOS due to reported severe GI dysmotility of unknown etiology with largely normal work-ups Extensive genetic testing without conclusive diagnoses in multiple statesBoth with diagnoses of GI dysmotility with subsequent GT and then GJ tube placementRepeated hospitalizations for fecal impaction and Go-lytely clean-outs despite aggressive outpatient bowel regimens and monthly follow-up with GI
Slide11Small Group Case DiscussionPlease break into 3 small groupsWhat makes this case challenging?Did you have a “spidey sense” kick in? Would you have listened to it? Why or why not? What is your current approach to these patients and families?
Slide12Literature Review“The largest impediment to early diagnosis of MSBP was omission of factitious illness from the differential diagnosis1”
Slide13Current Problems in Pediatric Adolescent HealthcareJackson et al.2Unique complexities of Medical Child AbuseIncorporates physical abuse, emotional abuse and neglectStresses that the threshold to report MCA is suspicion, not diagnosisMultidisciplinary Team Approach
Slide14Current Problems in Pediatric Adolescent HealthcareHeightened awarenessHistorian’s consistency with informationChronic discrepancies between presentation of child and history givenExpanding list of familial ailmentsMultiple nonspecific diagnosesMedications prescribed solely on history
Slide15Current Problems in Pediatric Adolescent HealthcareDocument and Obtain Outside DocumentationHistorianImplausible historiesEscalating behaviorExaggerated symptoms in the setting of actual pathologyUnexplained tests with no medical findingsSuspicious polymicrobial infections
Slide16Current Problems in Pediatric Adolescent HealthcareChildren can be intentional or unintentional active participants in MCAIdentify with the sick roleChildren using adult terminology Responding inaccurately to pain scales Self injurious behavior to feign symptomsDocument inconsistencies with history (wheelchair bound) vs. clinical picture (running down the hall)
Slide17PediatricsRabbone I et al3 Highlights how induced illness can simulate true medical conditionsPhysicians search for what they knowEasy to lose objectivity Especially in the instance of medical conditions not easily feignedTrust your gutRed flags
Slide18Child Abuse and NeglectBrown AN et al4Other Clues in the Social Media AgeCaregiver blogsGo Fund MeCare Pages Facebook Pages
Slide19Child Abuse and NeglectDistortion PatternsEscalation PatternsAttention PatternsExposure of pediatric patients to public viewingAttitude towards medical providersFundraising and charity
Slide20LancetBass C et al5Effects of MCA on the childPhysical HealthRepeated investigations, treatments, admissionsSerious harm, 6% MortalityDaily life and functioningLow school attendanceFew normal activitiesAssuming sick roleSocial isolation
Slide21LancetPsychological healthDistorted view of healthConfused about state of healthMay develop somatoform disorder or factitious disorderTherapeutic needs of the ChildTherapeutic needs of the familyTherapeutic needs of the perpetrator
Slide22LancetPrognosis: Better OutcomesIllness fabrication is acknowledged Willingness to work with agenciesCapacity of the treating team to work with psychiatric plan formulation Stressors at the time of abuse*Little evidence on reunification 20% of cases abuse reoccurs if the child stays with the caregiver
Slide23Hospital PediatricsGreiner et al.6 Hospital Pediatrics 2013Chart review screening instrument for early identification of medical child abuse (MCA) in hospitalized childrenAssessed children, caregiver and illness characteristics
Slide24Hospital PediatricsChildren admitted for evaluation of emesis/diarrhea, apnea, seizuresRetrospective case/control chart reviewScreened the 1st hospitalization of cases where MCA was confirmed
Slide25Hospital Pediatrics15 item screening tool Score > 4 with sensitivity and specificity of 0.947 and 0.956 respectively; (p<0.5)Most predictive patient items: illness abatement out of care of the primary caregiverMost predictive caregiver items: personal history of child abuse, features of Munchausen syndrome, mental illness, and caregiver requests to leave AMA or be transferred
Slide26PCH Complex Care TeamMotivation“I am intimately involved with a clinical case with concern for medical child abuse and feel really uncomfortable making a final determination and plan for this patient by myself.” Jodi Carter email to PCH Social Work Manager, 2013SolutionAd hoc committee that convenes when a PCH team member has a concern for medical child abuse Any PCH team member may request to present to the committee (Physician, SW, RN, etc.)ObjectivesReview clinical information to determine if PCH should report medical child abuse to DCS
Identify a comprehensive care plan to ensure a child does not receive unnecessary and/or potentially life threatening procedures or treatments while investigation is underway
Slide27PCH Complex Care TeamStanding Members:Physicians – Hospitalist, Psychiatrist, Forensic PediatricianSocial Work ManagerForensic Social WorkerRisk/LegalAvailable Members invited after the committee has determined the need for their involvement in a particular casePoliceCPS RepresentativePediatric subspecialistsPCPOther
Slide28Complex Care Team ProcedureAny concerned staff member may convene the committeeConcerned party may request presence of any subspecialist or other team member
Slide29PCH Complex Care TeamPotential outcomes There is sufficient evidence to make a DCS and/or police report immediatelyMore information is needed (medical records from other hospitals, search for previous DCS reports, etc.)Plan made to monitor situationMay involve a plan for the next presentation to medical attention (office visit, admission, ER visit)Follow up meeting arranged
There is not sufficient evidence to support a concern for medical child abuse and case is dismissed
Slide30Small Group CasesHow would you present this case to a Complex Care Committee?Who would you want to be present to hear the case? Begin to develop a treatment approach.
Slide31Case 1 ResolutionThis patient and many of the siblings subsequently frequently admit to the hospitalClinical picture consistently differs from historyParents consistently request escalation in care without justificationAll 5 children removed from the homeAll diagnoses disproved
Slide32Case 1 Resolution
Slide33Case 2 Resolution7-yr-old female with constipationPt hospitalized 6 times in 3 monthsMom also reported feeding refusal and vomitingPlaced on NG tube feedsMother requesting G-tube placement and cecostomy tube placement
Slide34Case 2 ResolutionComplex Care Committee met following a hospitalization to develop a treatment plan for the next hospitalization.Final hospitalization, parents were removed from bedside by DCS.Patient ate all meals without difficulty. Bowel regimen was decreased.Pt remains in foster care, on miralax.No hospitalization since the final discharge when removed from biological parents care
Slide35Case 3 ResolutionYounger sister hospitalized for fecal impaction and a clean-out through her G-J tubeHospitalization utilized as a springboard to convene all concerned team members to review the cases of the two sisters and determine treatment planSeveral days later, the older sister was brought in by mother to the hospital for fecal impactionFurther meetings held with Complex Care Committee and DCS revealed multiple internet donation-based care pages and “Go Fund Me” pages managed by the mother claiming completely fabricated illnesses for the two sisters
Slide36Case 3 ResolutionOverwhelming belief by all physician members of the care team including all outpatient providers that the children should be removed for their safety and risk of further harm by remaining under their mother’s careBoth children were taken into DCS custodyAfter removal independent review of the case and psychiatric evaluation of the mother revealed MSBPYoungest sister now doing well, GJ tube removed, eating everything by mouth with normal stooling habits, maintaining a healthy weight.Older sister with more psychiatric sequelae resulting from the prolonged abuse and difficulties with deep-rooted beliefs that she possesses the diagnoses her mother told her she had. GJ tube removed. Eating by mouth.
Slide37Slide38How can you translate this concept at your institution?Would you appreciate having a committee like this at your institution?Is this feasible at your institution?What barriers do you predict might exist when trying to create a committee like this?Can you think of cases you’ve been involved with that might have benefitted from this type of committee?
Slide39Available ResourcesWhat/Who do you have at your disposal?HospitalSocial WorkHospital Care ManagersLegal DepartmentPhysician ChampionInsurance PlanMedical Director (CMDP)Care ManagersCommunityChild Protective ServicesLaw enforcement
PCP
Other Providers
Psychiatry
Forensic
Pediatrician
Other subspecialty
providers
Slide40Questions/Discussion
Slide41ReferencesRosenberg DA. Web of deceit: a literature review of Munchausen by proxy. Child Abuse Negl. 1987;11(4)547-563Jackson AM, Kissoon N, Greene C. Aspects of Abuse: Recognizing and Responding to Child Maltreatment. Curr Probl Pediatr Adolesc Health Care. 2015(45)58-70.
Rabbone
I,
Galderisi
A,
Tinti
D,
Ignaccolo
MG,
Barbetti
F,
Cerutti
F. Case Report: When an Induced Illness Looks Like a Rare Disease.
Pediatrics
2015;136(5)1-5.
Brown AN, Gonzalez GR,
Wiester
RT, Kelley MC, Feldman KW. Care taker blogs in caregiver fabricated illness in a child: A window on the caretakers thinking?
Child Abuse
Negl
. 2014;(38)488-497.
Bass
C, Glaser D. Early recognition and management of fabricated or induced illness in children.
Lancet
2014;383:1412-1421
.
Greiner
MV,
Palusci
VJ,
Keeshin
BR, Kearns SC,
Sinal
SH. A Preliminary Screening Instrument for Early Detection of Medical Child Abuse.
Hospital Pediatrics
. 2013(3)39-44.
Slide42Contact InformationDr. Anne BeasleyAnne.beasley@advocatehealth.comDr. Jodi Carterjcarter@phoenixchildrens.comDr. Kelly Kelleherkkelleher@phoenixchildrens.com