Secrets, Lies and Testing Dilemmas: Parents’ Requests for Adolescent Drug Testing, Sexual behavior Information Sharing and Ownership of Diagnostic Results Leslie R. Walker, MD Associate Professor, Chief of Division of Adolescent Medicine Department of Pediatrics Treuman Katz Center for Pediatric Bioethics Conference

Territory to Cover Parent –Provider-Teen Triad Parent –Provider-Teen Triad Providers Dilemma Providers Dilemma Statutes/Laws influence Statutes/Laws influence Context matters Context matters

Communication Relationship Parent Teen

The Triad Teen ProviderParent

Management of Information Assumption: Disclosure of information will allow the parent to monitor and control an adolescent outcome Assumption: Disclosure of information will allow the parent to monitor and control an adolescent outcome Adolescent non-disclosure is typically regarded as negative in studies Adolescent non-disclosure is typically regarded as negative in studies Increased parental monitoring is regarded as positive Increased parental monitoring is regarded as positive

Management of Information: Dynamic Process A parents desire for disclosure is dependent on the adolescents’ willingness to disclose Tilton-Weaver, Marshall 2008 A parents desire for disclosure is dependent on the adolescents’ willingness to disclose Tilton-Weaver, Marshall 2008 Increased disclosure parental monitoring Increased disclosure parental monitoring Decreased disclosure parental monitoring Decreased disclosure parental monitoring

Management of Information Adolescents privacy and disclosure: Adolescents privacy and disclosure: Important for boundary development Important for boundary development Help establish autonomous identity Help establish autonomous identity

Management of Information Darling, et. al.2006 Darling, et. al year old Chilean students year old Chilean students 97.5% reported non-disclosure to parents 97.5% reported non-disclosure to parents Reasons to tell: Reasons to tell: 51% Felt obligated to disclose 51% Felt obligated to disclose 34% To persuade parents 34% To persuade parents 15% Would get caught 15% Would get caught

Management of information Reasons to withhold: 39% fear of punishment 39% fear of punishment 37% emotional reasons 37% emotional reasons 24% their private business 24% their private business

Management of Information Adolescent medical disclosure of information: Adolescents reluctant to disclose without confidentiality assurance. Adolescents reluctant to disclose without confidentiality assurance. Ford C et. al Ford C et. al. 1997

Management of Information Parents demand to know Parents demand to know Adolescent need for autonomy Adolescent need for autonomy Providers charge to provide care to Providers charge to provide care to patient patient THE DILEMMA

Management of Information Provider contribution: Culture plays a role Culture plays a role Trust plays a role Trust plays a role Agenda to improve/treat adolescent Agenda to improve/treat adolescent Legal considerations have a role Legal considerations have a role Increased possibility of cooperative adherence to recommendations Increased possibility of cooperative adherence to recommendations

Provider 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 her “Doctor, we do not want to tell her yet she has terminal cancer….. yet she has terminal cancer…..

Challenge To slow down To slow down To communicate effectively To communicate effectively To negotiate with parent To negotiate with parent To negotiate with teen To negotiate with teen To achieve workable rapport with both To achieve workable rapport with both To maintain trust To maintain trust

Legal Considerations State statutes must be known by provider State statutes must be known by provider Can be helpful for Provider to form clinic process/treatment guidelines Can be helpful for Provider to form clinic process/treatment guidelines Have little to do with successful negotiation of the conflict Have little to do with successful negotiation of the conflict

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

“I need you to tell me if he is using drugs” Already you know useful information that may diffuse the urgent situation. Already you know useful information 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 Needed Time Time Confidential inquiry with Sam Confidential inquiry with Sam Outcome oriented discussion with Mom Outcome oriented discussion with Mom Agreed upon information that can be used in joint conversation Agreed upon information that can be used in joint conversation Next steps plan Next steps plan

Information Exchange Sexual Behaviors Sexual Behaviors Secretive Behaviors Secretive Behaviors Seeing the boyfriend/crew again Seeing the boyfriend/crew again Chronic or Terminal ….. Chronic or Terminal ….. STD’s STD’s Drugs Drugs Adherence to medication Adherence to medication

Context Matters Private Primary Care office Private Primary Care office Public Health Clinic Public Health Clinic School based Health Clinic School based Health Clinic Closed HMO system Closed HMO system Payment Source Payment Source Ease of Access Ease of Access

Road Map to Consensus No clear answers No clear answers Many considerations Many considerations Awareness of personal beliefs/bias Awareness of personal beliefs/bias Awareness of cultural concerns Awareness of cultural concerns Need to provide effective care to teen Need to provide effective care to teen Context matters Context matters

Ultimate Goal Accessible Accessible Acceptable Acceptable Appropriate Appropriate Effective Effective Equitable Equitable