Ethics Forum: Prescribing Teratogenic Medications to Adolescents Can Raise Confidentiality, Ethical Concerns

Dr. Onel

Dr. Tesher

Case

A 17-year-old girl returns to the rheumatology clinic for scheduled follow-up for systemic lupus erythematosus (SLE). She is accompanied by her mother and father. She has a history of autoimmune cytopenias and Class III lupus nephritis. She has responded well to treatment with mycophenolate mofetil and hydroxychloroquine and was successfully weaned off of prednisone three months prior. She and her parents report that she has been feeling well with no recent complaints. Laboratory tests from the previous week, including CBC with differential, inflammatory markers, complement levels and urinalysis, are unremarkable except for stable, low-level proteinuria. A urine pregnancy test—performed routinely for reproductive-age patients taking mycophenolate—is negative. There are no notable abnormalities on physical examination.

Per the rheumatologist’s usual practice when treating adolescents, the parents are asked to leave the exam room, and the patient is interviewed confidentially. Upon questioning, the patient discloses that she has recently become sexually active (consensually) with her 17-year-old boyfriend. She reports using condoms “almost every time” for pregnancy prevention. She states that she knows that mycophenolate can cause birth defects if taken during pregnancy, because her rheumatologist has provided previous education on the topic.

The patient’s parents are not aware that she is sexually active, and she asks the physician not to disclose this information because she fears her parents would be very angry if they knew. The physician recommends that she use a second, non-estrogen contraceptive method in addition to condoms. The patient expresses willingness to use a long-acting, highly reliable reversible contraceptive method, such as a progesterone implant or progesterone-releasing IUD. However, she does not want her parents to find out that she is using contraception. She worries that even if she goes alone to a medical visit to request contraception, her parents will receive a bill from insurance that divulges this information.

Teratogenic Medications & Teens

This case presents a number of ethical challenges to the treating rheumatologist. Examples: Mycophenolate mofetil has been remarkably effective in managing this patient’s SLE, but should the rheumatologist continue to prescribe it if the patient is at risk for pregnancy? If a different immunosuppressant is selected, what rationale for the change can be provided to the patient’s parents? Is there a way for this patient to obtain safe and appropriate contraception without unintended disclosure of sensitive information to the parents?

For some adolescents, parents and guardians can be allies in obtaining contraception if needed; in the case described above, the rheumatologist caring for this patient may want to explore the option of encouraging the patient to discuss the situation with her parents. However, many young people are uncomfortable discussing sexual health with their parents or lack trusting, supportive family relationships. In extreme instances, the disclosure of a teenager’s sexual activity to her parents could put her at risk for parental abuse or expulsion from the home.

Specific laws determining an adolescent’s right to confidentiality in medical situations vary by state, and it’s important physicians be aware of the regulations specific to their region of practice. Each state has provisions allowing adolescents to legally consent to medical care in certain situations, including emergencies, pregnancy-related care, STDs and HIV infection, contraceptive care, substance abuse and mental health care.¹ However, a right to consent does not guarantee confidential or accessible care.

In this case, the patient’s health insurance is provided by her parents. If she uses the insurance to pay for contraception, the billing process would likely generate an explanation of benefits report, which would be mailed to her parents, thus disclosing sensitive information.²

Title X (& Its Limitations)

In the U.S., many young people can independently access reasonably priced contraceptive care. The Title X publicly funded family planning program was enacted in 1970 with broad bipartisan support and signed into law by President Richard Nixon. Title X provides federal funds for family planning clinics, which are required to provide care regardless of patients’ ability to pay. For individuals with incomes above the poverty level, fees for service are based on a sliding scale.³

Title X clinics are present in every state. However, the accessibility of these clinics is variable and may be more limited in areas with widely dispersed populations due to transportation barriers.⁴

Rheumatologists who frequently prescribe teratogenic medications should acquire familiarity with family planning laws and resources in their region. Confidential, low-cost contraceptive services broadly enable all physicians to provide necessary medical care and are particularly essential for vulnerable populations, including adolescents. In the case above, if confidential family planning services are inaccessible to the patient, the physician will be unable to provide care without contradicting at least one of the central principles of medical ethics: autonomy, beneficence, non-maleficence and justice.

Challenging Choices

In the absence of accessible contraceptive care for the patient in the case above, the rheumatologist might consider changing her immune suppressant from mycophenolate mofetil to azathioprine, which poses less risk during pregnancy.⁵ Although this approach reduces the risk of teratogenic effects (should the patient unexpectedly become pregnant), beneficence is compromised because the physician would not ordinarily consider changing medications when the patient’s current treatment is highly effective. Moreover, to avoid violating confidentiality, the rheumatologist might be in the awkward position of providing the patient’s parents a false, or at least disingenuous, rationale for the change in medication.

Justice would also support equal access to treatment, which is not attained when treatment is determined by a patient’s age, gender and geography. Continuation of mycophenolate mofetil treatment while warning the patient to be consistent with use of barrier contraception is similarly unsatisfactory. The annual typical-use failure rate of condoms is about 15%, exposing the patient to an unacceptable risk of serious complications that violates the principle of non-maleficence.⁶

Among rheumatologists, contraceptive access for young people is not generally considered an issue of central importance. This case illustrates the challenge of caring for adolescents with medical conditions in which teratogenic medications are indicated.

Recently, contraceptive care has raised political controversy, exemplified by a movement to defund Planned Parenthood (a major provider of Title X family planning services). National health organizations, such as the Society for Adolescent Medicine, have emphasized the importance of eliminating barriers to contraceptive care for adolescents.⁷ This clinical vignette demonstrates that availability of confidential family planning services is a necessary prerequisite that can allow physicians of all specialties to provide outstanding, evidence-based care for women and girls of childbearing age while also maintaining the highest ethical standards.

Karen B. Onel, MD, is section chief of pediatric rheumatology and associate professor of pediatrics at the University of Chicago. She is a member of the ACR’s Committee on Ethics and Conflict of Interest.

Melissa Tesher, MD, is assistant professor of pediatrics and program director for the pediatric rheumatology fellowship training program at the University of Chicago.

References

1. English A, Ford CA. The HIPAA Privacy Rule and adolescents: Legal questions and clinical challenges. Perspectives on Sexual and Reproductive Health. 2004 Mar/Apr;36(2):80–86. https://www.guttmacher.org/about/journals/psrh/2004/hipaa-privacy-rule-and-adolescents-legal-questions-and-clinical-challenges#24a.
2. Tebb K, Sedlander E, Pica G, et al. EOB Policy Brief: Protecting adolescent confidentiality under health care reform: The special case regarding explanation of benefits (EOBs). Philip R Lee Institute for Health Policy Studies and Division of Adolescent and Young Adult Medicine, Department of Pediatrics, University of California: San Francisco: June 2014.
3. Hasstedt K. Title X: An essential investment, now more than ever. Guttmacher Policy Review. 2013 Summer;16(3):14–19.
4. Fowler CI, Gable J, Wang J, et al. Family Planning Annual Report: 2014 National Summary. Research Triangle Park, N.C.: RTI International, 2015 Aug.
5. Ponticelli C, Moroni G. Immunosuppression in pregnant women with systemic lupus erythematosus. Expert Rev Clin Immunol. 2015 May;11(5):549–552.
6. Whitaker AK, Gilliam M. Contraceptive care for adolescents. Clin Obstet Gynecol. 2008 Jun;51(2):268–280.
7. Society for Adolescent Health and Medicine, et al. Sexual and reproductive health care: A position paper of the society for adolescent health and medicine. J Adolesc Health. 2014 Apr;54(4):491–496.

Editor’s note: If you have comments or questions about this case, or if you have a case that you’d like to see in Ethics Forum, email us at [email protected].