Failure to Thrive for Investigators · 7/15/2016  · failure to thrive. Pediatrics 2011;128(6):e1467-73. Meadow R. Munchausen syndrome by proxy. The hinterland of child abuse. Lancet

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WI CAN Educational Series Hillary W. Petska, MD, MPH

Child Advocacy and Protection Services

Children’s Hospital of Wisconsin

There are no relevant financial relationships related to this

presentation/program.

There is no sponsorship/commercial support of this presentation/program.

The content being presented will be fair, well-balanced, and evidence-based.

Learners who wish to receive Continuing Education Credit (CME/CLE/CE)

must complete and turn in evaluations to successfully complete this program.

• Medical complexity and medical child abuse may be difficult to differentiate.

• Undiagnosed, rare diseases may raise concerns for medical child abuse when none is present and medical child abuse may be the cause of medical complexity.

• Both conditions require careful consideration to prevent harm to the child and family.

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• Children with multiple medical conditions

• <1-5% of the U.S. pediatric population

• Typically have: • Neurologic impairment • Functional limitations • Technology dependence • Multiple meds,

specialists • High healthcare costs

• Child receives unnecessary and harmful/potentially harmful medical care at the instigation of a caregiver • Exaggeration

• Fabrication

• Induction

Other names for

MCA

First used by Characteristics

Munchausen

Syndrome by Proxy

(MSBP)

Sir Roy Meadow

(1977)

Identified MSBP as a form of child abuse, focused

on caregiver motive

Factitious disorder

by proxy

DSM-IV (1994) Psychiatric disorder in caregivers who falsify

illness in a child for their own needs, focused on

caregiver motive

Pediatric condition

falsification (PCF)

APSAC (2002) A child abused in this manner is a victim of PCF;

focused on caregiver action

Child abuse in a

medical setting

AAP SOCAN

(2007)

Focused on the harm caused to the child

Medical child abuse Roesler and

Jenny (2009)

Focused on the harm caused to the child

Caregiver-fabricated

illness in a child

AAP SOCAN

(2013)

Focused on caregiver action

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• Practitioner = instrument of abuse

• Blood draws

• Exams

• Admissions

• Procedures

• Surgeries

• Medications

• Morbidity = 100% Mortality = 9%

• Delayed diagnosis = 21.8 mos

• Consequences for family and patient-provider relationship

Medical Complexity

Medical Child Abuse

• Avoid assumptions based on perceptions about caregiver/ family

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• Communication challenges

• Health literacy • Stressors • Unreliable information

• Requests for care • Lack of diagnosis • Second opinion • Fear/anxiety, secondary

trauma • Vulnerable child

syndrome • “Catastrophization” • Medical child abuse

• Lack of familiarity with rare disease

• Defensive medicine

• Family-centered care

• Pursuit of “zebras”

• Availability of advanced testing

• Lack of diagnosis

• Lack of communication

• Females > males

• Healthcare background

• Common presentations: • Bleeding

• Seizures

• CNS depression

• Apnea

• Feeding problems

• Diarrhea

• Vomiting

• Fever

• Rash

• ?

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History does not match objective findings

Unexplained, unexpected symptoms, which may only be observed by a single caregiver

Atypical response of child’s illness to its standard treatments

Caregiver insistence that excessive/invasive interventions needed

Incongruent caregiver affect (e.g. parent not relieved when told child is improving or does not have an illness)

Caregiver or sibling(s) with history of unusual, unexplained illness

Disclosure of abuse by child

• “Doctor shopping”

• Multiple providers

• Multiple institutions

• Resistance to release of records

• Previous provider concerns for MCA

Basis of Concern for MCA Strategies

Objective findings do not

match the history

• Define clearly what was known

and what was reported by the

caregiver

• Encourage verbatim

documentation when caregiver

discusses the history

Symptom only occurs when

caregiver present

• Encourage respite time with close

monitoring in caregiver absence

(e.g. sitter)

• Consider talking with the child

alone if verbal

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Basis of Concern for MCA Strategies

Caregiver request for procedures

that appear incongruent with

previously stated goals

• Assess whether goals have changed,

caregiver understanding (e.g. teach back)

• Consider social work consult to better

understand psychosocial factors

• Involve other caregiver supports (e.g.

Health Psych) if struggling with grief or

other issues

• Consider ethics consult

Caregiver obstructs release of

outside records

• Plan family meeting to explain rationale

and to develop a ‘contract’ about

expectations of the caregiver and

healthcare team

• Ask whether there are specific people at

other institutions with whom one can

speak

Caregiver obtaining secondary

gain from child’s condition

• Unless causing the caregiver to

seek additional procedures to

maintain the sick role or causing

other harm to the patient, no

specific interventions needed

Healthcare team is being

triangulated by the caregiver

• Schedule care conference to ensure

consistent message from and to

caregiver

Members of the team make

negative assumptions about the

caregiver’s behavior

• Consider social work consult to

better understand psychosocial

factors

• Involve other caregiver supports

(e.g. Health Psych) if struggling

with grief or other issues

Date,

type of

visit

Provider

and

facility

name

Reason/

chief

complaint

Final

diagnosis

Diagnostic

testing

performed

including

blood draws

Discrepancy between caregiver

report and objective data (observed

behavior, exam, lab, test data)

Specific

location in

the

medical

record

Other

comments

Caregiver

report

Objective

data

Reason for

concern

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• Last resort

• Pre-established institutional protocol with appropriate safeguards

• May diagnose MCA or medical condition

• Caregiver will have to be told

• Re-evaluation of plan of care

• Reporting

• Collaboration with medical providers

• Request for records

• Insurance/EDS reports

• Social media review

• Monitoring for recurrence

• Monitoring for other types of maltreatment

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• Identify

• Stop

• Prevent recurrence

• Repair

• (all in the least restrictive

manner)

• Child > caregiver

• For therapy to be successful, caregiver must take responsibility for actions

• “Contract” with caregiver/family and medical providers to prevent further harm to the child

• Distribute the contract to all involved parties

• Caregiver motivation is not relevant to diagnosis.

• There are a number of possible motives in these cases.

• None of them excuse the harm done to the child.

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• Def: Interpersonal/ social advantages gained indirectly from illness • Attention • Sympathy • Resources • Benefits • Status • Money • Donations

• ≠ MCA in isolation, but may constitute emotional harm

• It can be difficult to distinguish medical complexity and medical child abuse.

• Maintain a high index of suspicion and get more information.

• The child comes first!

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I would also like to acknowledge Dr. Lynn K. Sheets, Dr. John Gordon, and Deb Jablonski who provided additional cases/slide content.