NEW: HIV Disclosure to Parents and Consent to HIV Treatment Among Adolescents
Posted November 2012
The primary goal for clinicians who treat HIV-infected minors is to provide appropriate care that minimizes HIV disease progression. Although most medical treatment for HIV-infected minors requires parental or guardian disclosure, the rare situation may arise when someone under 18 years of age who is ineligible to consent to care has not disclosed his/her HIV status to a parent or legal guardian. This chapter aims to provide guidance on how to engage youth in the process of disclosing to parents or legal guardians and how to medically manage these patients while resolving issues of consent.
II. ADOLESCENT CONSENT ACCORDING TO NEW YORK STATE LAW
Whenever possible, clinicians should obtain parental or legal guardian consent for HIV-related treatment for adolescents under 18 years of age who may be unable to consent to care according to New York State law.
Clinicians should be versed in New York State laws regarding consent and confidentiality for adolescents under 18 years of age and should educate their HIV-infected adolescent patients about these laws. (AIII)
Clinicians should refer to their institutional policy or consult with the institution’s legal department regarding adolescents under 18 years of age who refuse to disclose their HIV status to their parents or legal guardians and may be unable to consent to care according to New York State law.
A. Minors Who Are Eligible to Consent to HIV Treatment
Clinicians should encourage adolescents who consent to their own care to identify an adult who can provide support.
According to New York State Public Health Law, any person who is 18 years of age or older or who is the parent of a child or who is married may give effective informed consent to HIV-related treatment. Any minor who is pregnant may give consent to prenatal care (including HIV-related treatment or termination of pregnancy).1
B. Minors Who Are Ineligible to Consent to HIV Treatment
Clinicians should clearly document discussions regarding consent and disclosure of HIV status to parents and legal guardians in the HIV-infected adolescent’s medical record. (AIII)
For minors who are ineligible to consent to HIV treatment and who are not ready or who choose not to disclose their status to their parents or legal guardians, a multidisciplinary approach is often required to successfully engage these youth in the process of disclosing to parents or guardians. Clinicians who provide care for HIV-infected adolescents should be versed in New York State laws regarding adolescent consent and confidentiality and should refer to their institution’s policy regarding adolescents under 18 years of age who refuse to disclose their HIV status to their parents or legal guardians. Consultation with the institution’s legal department may be required for patients with special circumstances or when a policy for adolescent consent has not been established.
III. MEDICAL MANAGEMENT AND ENGAGEMENT IN THE PROCESS OF DISCLOSURE
Adolescents who have not yet discussed their HIV status with their parents or legal guardians and who may be unable to consent to care according to New York State law should receive education about the importance of remaining in care and should receive medical services to which they may consent, including:
- Standard disease monitoring (e.g., physical and laboratory assessments such as CD4 counts and viral load tests)
- STI screening and treatment
- Family-planning services
- Risk-reduction, mental health, and substance use counseling
Under most circumstances, antiretroviral therapy (ART) and other HIV-related medications may not be prescribed without parental or guardian consent. When the clinician believes that it is medically necessary to initiate ART or other HIV-related medications for a minor who will not disclose to his/her parent or legal guardian and the minor understands his/her condition, including the risks, benefits, and treatment options, every effort should be made to engage the patient in a dialogue with the goal of disclosure to parents or legal guardians. Although parental or legal guardian consent should be obtained before initiating ART, the clinician may not disclose confidential HIV-related information if, in the judgment of the clinician, the disclosure would not be in the best interest of the minor.2 Such a disclosure may also jeopardize the patient-provider alliance, as well as the patient’s future acceptance of care.
A dialogue with the patient involving the long-term goal of disclosure to parents or legal guardians is necessary for establishing conditions for a minor’s HIV treatment. Determination of whether a minor’s health or well-being may be at risk if he/she discloses to his/her parent or legal guardian is part of establishing a framework for patient care. For example, a young man who has sex with men (YMSM) may risk being forced out of his home if he discloses his HIV status, and thereby his sexual identity, to his parents or legal guardians; or a female adolescent who has acquired HIV through sexual transmission may fear physical abuse if her family learns of her sexual activity.
- Adolescent patients may be at risk for abuse if they disclose their HIV status. Appropriate referrals and assistance should be offered to patients reporting such risks.
- Discussions about disclosure and possible risks to the adolescent should be documented in the medical record.
- Coordination with insurance companies is necessary to ensure that confidentiality is managed according to patients’ wishes.
Many healthcare facilities have established policies and procedures to determine how to obtain consent for minors to receive HIV care. In the absence of such policies and procedures in their facilities, clinicians should seek consultation with their facility’s legal or risk management departments.
Clinicians should educate HIV-infected adolescents about the importance of working with their insurance plan’s member services regarding the following rights:
- To “opt out” of explanations of benefits (EOBs) that are mailed to their parents or legal guardians regarding HIV care
- To request that insurance cards be mailed to an alternate address
- To ensure that information is not inadvertently disclosed through electronic portals that parents or legal guardians may be able to access
The NYSDOH AIDS Institute’s Dear Colleague Letter provides information about minors’ confidentiality rights with insurance companies.
Additional resources for information on adolescent confidentiality include:
- New York State Confidentiality Laws—Laws pertaining to HIV/AIDS testing, reporting, and confidentiality of HIV-related information. Refer to www.health.ny.gov/diseases/aids/regulations
- Society for Adolescent Health and Medicine (SAHM)—Clinical care resources information includes the CDC’s changes to 2010 STD Guidelines, confidentiality, and a recommended immunization schedule for adolescents 10-25 years old. Refer to www.adolescenthealth.org/Clinical_Care_Resources/4032.htm