Legal Guide for Clinicians on Non-Adherence to HIV Treatment by Adolescents

1. Non-adherence to Treatment Regimen by Adolescents with HIV:A Legal Guide for Clinicians AETC Adolescent HIV/AIDS Workgroup

2. This presentation was developed by the Adolescent HIV/AIDS Workgroup, and its Legal Rights and Entitlements Subgroup, in collaboration with the AIDS Education and Training Centers National Resource Center (AETC NRC).

3. Subgroup Members • David Korman, JD — Subgroup Leader (Pennsylvania/MidAtlantic AETC) • Vera Holmes, LCSW (FXB Center) • Cathy Samples, MD, MPH (New England AETC) • Subgroup Members from AETC NRC • Megan Vanneman, MPH – Subgroup Coordinator • Supriya Modey, MPH, MBBS

4. Importance of adherence • Importance of patient adherence to medication protocol cannot be overstressed. • Non-adherence: • Mitigates efficacy. • Increases mutability and resistance. • Increases secondary infection risk.

5. General legal rule • Legally competent (or capacitated) person can lawfully refuse treatment. • Minor (someone under 18 years of age) is usually not competent to make medical decisions. (Exceptions will be discussed later in the presentation.)

6. Conflict between law and medicine • Law generally takes an inflexible approach to capacity primarily based on age. • Most adolescent medicine practitioners prefer a more fluid, individualized approach based on the maturity of the minor and his/her capacity (generally increasing with age).

7. Typical case • In case involving HIV-positive minor, minor’s parents typically aware of adolescent’s condition and treatment. • Parents are part of the decision-making process and an integral part of “medical provider- patient team.”

8. First issue:Is the minor non-adhering? • Minor self-disclosing non-adherence. • Parents alleging non-adherence. • Medical/laboratory evidence of non-adherence. • Prescription evidence (e.g., refill frequency).

9. Second issue:Are the parents a problem? • Parents compromised and/or unable to take care of minor. • Parents do not understand importance of adolescent’s adherence. • Parents’ beliefs regarding ARV and their side effects. • Clinician should consider appropriateness of social services intervention for parents.

10. Other factors/barriers to adherence • Plethora of reasons for non-adherence should be examined. Many do not amount to “legal issues,” but must be addressed. • Barriers may be systemic, financial, time constraints, peer obligations/pressures, etc.

11. Worst case scenario • Parents hinder and/or prevent adolescent’s compliance. • Does this constitute “child abuse or neglect?”

12. Case study # 1 • HIV positive teen lived with his mother who was also HIV infected and active injection drug abuser. • Mother actively frustrated possible medicine regimen adherence of her son by her conduct. • Could this be abuse/neglect for which the teen may be removed from her house?

13. Typical definition of “child abuse” • The term "child abuse" includes: • Serious physical neglect by a perpetrator constituting prolonged or repeated lack of supervision or the failure to provide essentials of life, including adequate medical care, which endangers a child's life or development or impairs the child's functioning. From 23 PA CS Sec. 3603 (Pennsylvania)

14. Mandatory reporting • Mandatory reporting: Persons who, in the course of their employment, occupation or practice of their profession, come into contact with children shall report …when they have reasonable cause to suspect, on the basis of their medical, professional or other training and experience, that a child coming before them in their professional or official capacity is an abused child. From 23 PA CS Sec 6311(Pennsylvania) • Clinician may be legally mandated to report child abuse to child protective agency and/or law enforcement.

15. Difficult decisions and outcomes • Investigation of abuse/neglect by state agency disruptive to already stressed family. • Potential removal of minor from family may be opposed by adolescent and parents. • Medical provider/patient/parent relationship damaged.

16. Caution • These situations are very case specific. • Consider consultation with clinical ethicist, ethics committee, social worker and adolescent medicine specialists.

17. Court remedies • Counseling and monitoring of parents. • Appointment of medical guardian for minor. • Removal of child from parents and appointment of foster parents or placement in residential program.

18. What if minor is “medically emancipated?” • Medical emancipation= minor can be treated without a parent/guardian’s knowledge or consent. • Cases in which adolescent patient does not live with parent/guardian and is medically emancipated (usually due to age or a condition pursuant to a particular statute).

19. Medically emancipated does not mean competent • Medical emancipation does not mean that the minor has full capacity. • Remember, not all adults have capacity either.

20. How? Generally, can the minor … • Understand the situation? • Explain reasons for decision/action? • Describe risks and benefits of • decision/action? Regardless of age or “exception,” determine if minor has capacity

21. If minor has capacity… • Probably no possible legal action to be taken. • Continue to counsel patient appropriately about the risks of non-adherence.

22. If minor lacks capacity … • Legal remedies are same as for adult lacking capacity. • Petition court for appointment of guardian for minor. • Most states provide for limited guardianships (i.e., for medical purposes).

23. Case scenario # 2 • HIV positive 17 year old male residing in a state which treats HIV as an STI and provides that minors of 16 years or older may be tested and treated without parental notification or consent. • He resides alone, without any parent or guardian and appears to be self-sustaining by lawful work.

24. Case scenario # 2 (continued) • It is apparent that he is not adhering to the medication regimen on the basis of his self-disclosed non-adherence and infrequency of medicine refills. • He appears to be rational and cognitively appreciates the situation.

25. Questions • Is there a legal way to “coerce” adherence? (Hint: Probably not) • What can/should be done? (Hint: questions) • What are the problems? Time? Money? Housing? Rational or irrational beliefs about efficacy of medication?

26. Wisdom is not to be found in only one head • Use resources! • Clinical ethicists • Lawyers • Social workers • Psychologists • Adolescent medicine specialists

27. Suggested readings • Weir and Peters, “Affirming the Decisions Adolescents Make About Life and Death,” Hastings Center Report 27, no. 6 (November-December 1997): 29-40.