Non-adherence to Treatment Regimen by
Adolescents with HIV:
A Legal Guide for Clinicians
AETC Adolescent HIV/AIDS Workgroup
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).
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
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.
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.)
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).
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.”
First issue:
Is the minor non-adhering?
 Minor self-disclosing non-adherence.
 Parents alleging non-adherence.
 Medical/laboratory evidence of nonadherence.
 Prescription evidence (e.g., refill frequency).
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.
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.
Worst case scenario
Parents hinder and/or prevent adolescent’s
compliance.
Does this constitute “child abuse or
neglect?”
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?
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)
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.
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.
Caution
 These situations are very case specific.
 Consider consultation with clinical ethicist,
ethics committee, social worker and
adolescent medicine specialists.
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.
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).
Medically emancipated does not
mean competent
 Medical emancipation does not mean that
the minor has full capacity.
 Remember, not all adults have capacity
either.
Regardless of age or “exception,”
determine if minor has capacity
How? Generally, can the minor …
1. Understand the situation?
2. Explain reasons for decision/action?
3. Describe risks and benefits of
decision/action?
If minor has capacity…
 Probably no possible legal action to be
taken.
 Continue to counsel patient appropriately
about the risks of non-adherence.
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).
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.
Case scenario # 2 (continued)
It is apparent that he is not adhering to the
medication regimen on the basis of his selfdisclosed non-adherence and infrequency of
medicine refills.
He appears to be rational and cognitively
appreciates the situation.
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?
Wisdom is not to be found in only
one head
Use resources!
 Clinical ethicists
 Lawyers
 Social workers
 Psychologists
 Adolescent medicine specialists
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.