Secrets, Lies and Testing Secrets, Lies and Testing Dilemmas: Dilemmas:

Parents’ Requests for Adolescent Drug Parents’ Requests for Adolescent Drug Testing, Sexual behavior Information Testing, Sexual behavior Information Sharing and Ownership of Diagnostic Sharing and Ownership of Diagnostic

ResultsResults

Leslie R. Walker, MDLeslie R. Walker, MDAssociate Professor, Chief of Division of Associate Professor, Chief of Division of

Adolescent MedicineAdolescent MedicineDepartment of PediatricsDepartment of Pediatrics

Treuman Katz Center for Pediatric Bioethics - 2009 Conference

Territory to CoverTerritory to Cover

Parent –Provider-Teen TriadParent –Provider-Teen TriadProviders DilemmaProviders DilemmaStatutes/Laws influenceStatutes/Laws influenceContext mattersContext matters

Communication Communication RelationshipRelationship

Parent Parent TeenTeen

The TriadThe Triad

TeenTeen

ProviderProviderParentParent

Management of Management of InformationInformation

Assumption: Disclosure of information Assumption: Disclosure of information will allow the parent to monitor and will allow the parent to monitor and control an adolescent outcomecontrol an adolescent outcome

Adolescent non-disclosure is typically Adolescent non-disclosure is typically regarded as negative in studiesregarded as negative in studies

Increased parental monitoring is Increased parental monitoring is regarded as positiveregarded as positive

Management of Information: Management of Information: Dynamic ProcessDynamic Process

A parents desire for disclosure is dependent A parents desire for disclosure is dependent

on the adolescents’ willingness to discloseon the adolescents’ willingness to disclose Tilton-Weaver, Marshall 2008Tilton-Weaver, Marshall 2008

Increased disclosure parental Increased disclosure parental monitoringmonitoring

Decreased disclosure parental Decreased disclosure parental monitoringmonitoring

Management of Management of InformationInformation

Adolescents privacy and Adolescents privacy and disclosure:disclosure:

Important for boundary developmentImportant for boundary developmentHelp establish autonomous identityHelp establish autonomous identity

Management of Management of InformationInformation

Darling, et. al.2006Darling, et. al.2006703 11-19 year old Chilean students703 11-19 year old Chilean students97.5% reported non-disclosure to 97.5% reported non-disclosure to

parentsparents

Reasons to tell: Reasons to tell: 51% Felt obligated to disclose51% Felt obligated to disclose 34% To persuade parents34% To persuade parents 15% Would get caught15% Would get caught

Management of Management of informationinformation

Reasons to withhold: Reasons to withhold:

39% fear of punishment39% fear of punishment

37% emotional reasons37% emotional reasons

24% their private business24% their private business

Management of Management of InformationInformation

Adolescent medical disclosure of Adolescent medical disclosure of information:information: Adolescents reluctant to disclose without Adolescents reluctant to disclose without

confidentiality assurance.confidentiality assurance. Ford C et. al. Ford C et. al.

19971997

Management of Management of InformationInformation

Parents demand to knowParents demand to know

Adolescent need for autonomy Adolescent need for autonomy

Providers charge to provide care to Providers charge to provide care to

patientpatient

THE DILEMMATHE DILEMMA

Management of Management of InformationInformation

Provider contribution: Provider contribution: Culture plays a roleCulture plays a roleTrust plays a roleTrust plays a roleAgenda to improve/treat adolescentAgenda to improve/treat adolescentLegal considerations have a roleLegal considerations have a role Increased possibility of cooperative Increased possibility of cooperative

adherence to recommendationsadherence to recommendations

Provider requestsProvider requests

“ “Can’t you just test him secretly?” Can’t you just test him secretly?”

“ “I want to know, is he/she….”I want to know, is he/she….”

“ “Doctor, we do not want to tell Doctor, we do not want to tell her her

yet she has terminal cancer…..yet she has terminal cancer…..

ChallengeChallenge

To slow downTo slow downTo communicate effectivelyTo communicate effectivelyTo negotiate with parentTo negotiate with parentTo negotiate with teenTo negotiate with teenTo achieve workable rapport with To achieve workable rapport with

bothbothTo maintain trustTo maintain trust

Legal ConsiderationsLegal Considerations

State statutes must be known by State statutes must be known by providerprovider

Can be helpful for Provider to form Can be helpful for Provider to form clinic process/treatment guidelinesclinic process/treatment guidelines

Have little to do with successful Have little to do with successful negotiation of the conflictnegotiation of the conflict

““I need you to tell me if he is I need you to tell me if he is using drugs”using drugs”

You are in the middle of a busy You are in the middle of a busy clinic day and Sam B’s mother calls clinic day and Sam B’s mother calls and leaves a frantic message to the and leaves a frantic message to the office from her car to inform you she office from her car to inform you she is on her way with Sam to be drug is on her way with Sam to be drug tested. She has just found a baggie tested. She has just found a baggie of marijuana and a lighter in his of marijuana and a lighter in his backpack.backpack.

““I need you to tell me if he is I need you to tell me if he is using drugs”using drugs”

Already you know useful information Already you know useful information that may diffuse the urgent situation.that may diffuse the urgent situation.

Is it likely he is using?Is it likely he is using? Is it likely mom is not happy it and wants Is it likely mom is not happy it and wants

it to stop?it to stop? Is it likely that a drug test will solve the Is it likely that a drug test will solve the underlying issues?underlying issues?

What’s NeededWhat’s Needed

TimeTimeConfidential inquiry with SamConfidential inquiry with SamOutcome oriented discussion with Outcome oriented discussion with

MomMomAgreed upon information that can be Agreed upon information that can be

used in joint conversationused in joint conversationNext steps planNext steps plan

Information ExchangeInformation Exchange

Sexual BehaviorsSexual BehaviorsSecretive BehaviorsSecretive BehaviorsSeeing the boyfriend/crew againSeeing the boyfriend/crew againChronic or Terminal …..Chronic or Terminal …..STD’sSTD’sDrugsDrugsAdherence to medicationAdherence to medication

Context MattersContext Matters

Private Primary Care officePrivate Primary Care officePublic Health ClinicPublic Health ClinicSchool based Health ClinicSchool based Health ClinicClosed HMO systemClosed HMO systemPayment SourcePayment SourceEase of AccessEase of Access

Road Map to ConsensusRoad Map to Consensus

No clear answersNo clear answersMany considerationsMany considerationsAwareness of personal beliefs/biasAwareness of personal beliefs/biasAwareness of cultural concernsAwareness of cultural concernsNeed to provide effective care to Need to provide effective care to

teenteenContext mattersContext matters

Ultimate GoalUltimate Goal

AccessibleAccessibleAcceptableAcceptableAppropriateAppropriateEffectiveEffectiveEquitableEquitable