Maintaining Confidentiality for Teens Obtaining Reproductive Health Services
Background
Today's minors are faced with increasingly complex situations with regard to issues such as reproductive health and pregnancy prevention. While parents often assist teens in making positive health-related decisions, many teens do not have relationships that facilitate open discussion about reproductive health issues for a variety of personal reasons, such as fear of disappointment, punishment, or abuse (19). However, teens' inability to discuss these issues with their parents is not the only reason why they desire confidentiality. From a developmental perspective, the need for confidentiality in teen health care is based on teens' increasing autonomy and capacity (which takes into account chronological age, cognitive, and psychosocial development, as well as other factors) to give medical consent as they approach adulthood (13). Consequently, teens want to make their own decisions regarding health care, and like adults, they desire privacy and confidentiality when discussing these matters with a physician or health care provider. For these reasons, confidentiality for teens seeking reproductive health services is essential to ensure quality medical care.
The fear that personal health information may not be held in confidence prevents some minors from seeking health care services (21). A study conducted in Massachusetts indicated that over half of high school students have health concerns that they prefer not to discuss with their parents (19). This is compounded by the fact that a quarter of the students surveyed reported that they would choose to go without certain types of medical treatment if there were a possibility that their parents would come to know about the treatment (19).
In California, community health clinics report the issue of confidentiality as a significant barrier to treating teens, noting that teens may be hesitant to use services if they fear they may run into a family friend or neighbor. Clinic staff members have stated that teen fears about such a breach of confidentiality, which are often warranted, keep teens from accessing services (14).
A survey conducted by the California Center for Civic Participation and Youth Development found that confidentiality is the "most important factor in teen use of health care" (6). Nearly two-thirds of teens claimed they would be more likely to visit a clinic "if they were guaranteed it would be confidential" (6). Minors are therefore more likely to seek reproductive health care services when their confidentiality is assured (21), and confidential care is essential to safeguard public health and the health of adolescents who might not seek care for important concerns if privacy were not protected (13).
Policies
1. States can consider passing legislation that allows minors access to confidential medical care for reproductive health services.
Though parental consent is generally required for the medical treatment of minors, there are exceptions. A study conducted in July 2000 found that 25 states and the District of Columbia have laws or policies that specifically give minors the sole authority to consent to contraceptive services. Twenty-seven states and the District of Columbia have laws or policies that specifically authorize a pregnant minor to obtain prenatal care and delivery services. Finally, all 50 states and the District of Columbia specifically allow minors to consent to treatment for sexually transmitted diseases (STDs), including HIV (5). In each of these cases, the laws not only give minors' authority to consent to medical care, but allow them to do so without parents' knowledge or permission. Specific state laws include the following:
- California Family Code Section 6925 permits minors to receive confidential medical care related to the prevention or treatment of pregnancy (11). The health care provider is not permitted to inform a parent or legal guardian without the minor's consent in the case of health care services related to pregnancy, contraception, and abortion [California Health & Safety Code 123110(a) and 123115(a) and California Family Code 6925] (20). Minors also have the right to independently consent to a variety of other health-related services, such as STD testing, alcohol and substance abuse treatment, and mental health services (14), although California legal code stipulates that the minor must be age 12 or above to provide independent consent.
- A minor in New York who "understands the risks and benefits of proposed and alternative treatments" can obtain health services related to reproductive health care including family planning, abortion, pregnancy-related care (which includes care during labor and delivery), and care for sexually transmitted infections (12). Decisions about these services must be held in confidence unless the minor gives authorization otherwise (12).
Despite legal protection of confidentiality rights, certain payment methods can inadvertently compromise the minor patient's confidentiality (12). For example, itemized billing statements can reveal confidential information if the service is charged to a parent's health insurance plan (12). Patients can try to avoid such situations by asking their insurance company about the risks of disclosure through the payment or reimbursement process (12). However, in the event that confidentiality through private health insurance plans cannot be ensured, teens face two significant barriers to obtaining reproductive health services – the possibility of a breach of confidentiality if the insurance covered services are used, and significant costs if the services are obtained without the use of medical insurance. To remove these barriers to access to care, states can create subsidized programs that provide reproductive health services to teens for free, or at a low cost, with confidentiality assured by program regulations. Currently, all states can draw down federal funds from programs such as Title X of the Public Health Services Act (Title X), a federal program that provides family planning health services to anyone in need, regardless of age, on a confidential basis (2,5). However, in some states, such as California, there are many medically uninsured or underinsured residents who require additional reproductive health programs to address their unmet needs (2). States can address these needs by providing low-cost or free, confidential reproductive health services through programs such as the following:
- In 1996, California enacted legislation to create the Family Planning, Access, Care, and Treatment Program (PACT), which provides low-cost or free contraceptive services, STD diagnosis and treatment services, cervical cancer screening, and HIV screening services for low-income individuals, including teens (8). Low-income individuals are defined as having a family income at or below 200 percent of the federal poverty level with no other source of family planning coverage – this includes Medi-Cal recipients that have an unmet share of cost (9). However, if confidential health services are required, as in the case of teens, there is no income requirement (1). This program was created to address the lack of comprehensive reproductive health care services for low-income Californians, despite the existence of other programs such as Title X and previous state family planning programs (9). The program is particularly innovative because it allows licensed Medi-Cal providers in good standing to enroll as Family PACT providers, which greatly expanded the provider network, making services more accessible (10). In addition, the services provided through Family PACT are comprehensive, including full reproductive health exams and family planning services for both men and women (10). Providers who serve teens through Family PACT must agree to comply with program guidelines, including confidentiality and the right of minors to consent to services (14).
Another important component of the Family PACT program is the Teen SMART outreach program, designed by the California Office of Family Planning to provide reproductive health care, including counseling, pregnancy prevention, and STD risk reduction to teens enrolled in Family PACT TeenSMART clinics (7). In addition to the provision of reproductive health services, 23 providers perform outreach in their communities to assist teens who are at high risk of pregnancy to access clinical family planning services. Outreach activities include the establishment of referral networks, providing information about clinic services to teens in either group presentations or small group education and counseling sessions, and one-on-one sessions (7). This outreach is an important component of the program, as many teens in California are not aware of the confidential, low-cost services that are accessible to them.
Effectiveness Data
The American Medical Association (AMA) affirms that confidential care for adolescents is integral to improving health (4), and that physicians who treat minors must involve them in the medical decision-making process commensurate with the abilities of the minors. The AMA also states that when the law does not require otherwise, physicians should allow competent minors to consent to their own medical care and should not notify parents without the patient's authorization (3). A study performed by the AMA found that 75% of physicians surveyed generally favor confidential treatment for teens and 45% unconditionally favor confidential treatment of teens, even if it means withholding information from parents (18).
In addition, multiple studies have indicated that teens are more likely to utilize health care services in instances where confidentiality is assured. For example, a survey by the Kaiser Family Foundation found that confidentiality greatly affected where teens chose to receive HIV testing (16). A study in Philadelphia found that 63% of teens would be more likely to seek health care if the providers emphasized the confidential nature of the services (15). This implies that the assurance of confidentiality will increase utilization of reproductive health services.
Studies have also shown that when teens are not assured confidentiality, they will be less likely to seek out services. A survey of teenage girls in Wisconsin indicated that 59% would stop using all sexual health care services, delay testing or treatment for HIV and other STDs, or discontinue use of specific sexual health care services if parents were informed of their use of prescribed contraceptives (22). Only 1% of the teens indicated that they would stop engaging in sexual activity if they were not assured confidential access to contraceptives (13). Therefore, it is likely that if teens were required to obtain parental consent, use of reproductive health services would decrease, but sexual activity among teens would not (14).
Finally, an evaluation of the Family PACT program in California demonstrated that three years after the implementation of the program, unmet need for family planning services for teens decreased despite a growth in the number of teens eligible for services (17). Over a quarter of teens in need of family planning services received them from Family PACT in the first year of the program, a 67% increase over the prior year. By the end of the first year, almost 200,000 teens were enrolled in the program, or 22% of the total service recipients (17). It is estimated that in the first year of the program, 108,000 unintended pregnancies were prevented, of which 24,000 would have been born to teens (14). The success of Family PACT can partially be attributed to the confidential nature of these services, as a lack of confidentiality has clearly been identified by teens as a barrier to accessing services. In 1999, Family PACT was deemed successful enough to be eligible for a five year federal Medi-Cal Demonstration Project wavier, which allowed the program to access federal funds and expand services. There are currently over 4000 Family PACT service providers in California, up from 2600 in 2000 (10).
Resources
Adolescent Health Working Group
http://ahwg.net/
The Adolescent Health Working Group (AHWG) is a coalition of committed youth, adults, and representatives of public and private agencies whose mission is to significantly advance the health and well being of San Francisco's youth. The following is a publication of AHWG, as part of the Adolescent Provider Toolkit, a set of publications addressing issues that health care providers face when working with teens:
- Simmons, M., Shalwitz, J., & Pollock, S. (2002). Understanding confidentiality and minor consent in California: An adolescent provider toolkit. San Francisco, CA: Adolescent Health Working Group, San Francisco Health Plan.
http://www.advocatesforyouth.org/
Advocates for Youth is dedicated to creating programs and advocating for policies that help young people make informed and responsible decisions about their reproductive and sexual health. Advocates provide information, training, and strategic assistance to youth-serving organizations, policymakers, youth activists, and the media in the United States and the developing world.
Alan Guttmacher Institute
http://www.agi-usa.org/
The Alan Guttmacher Institute (AGI) is a nonprofit organization focused on sexual and reproductive health research, policy analysis, and public education. AGI publishes Perspectives on Sexual and Reproductive Health, International Family Planning Perspectives, The Guttmacher Report on Public Policy and special reports on topics pertaining to sexual and reproductive health and rights.
Get Real About Teen Pregnancy
http://www.letsgetreal.org/Home.htm
The "Get Real About Teen Pregnancy" campaign is committed to involving adults, the media, policymakers, community activists and the health care community in addressing teen pregnancy in a realistic, thoughtful manner.
National Center for Youth Law (NCYL)
http://www.youthlaw.org/
The law can offer hope and help for vulnerable children and youth, but children need advocates to make these laws work for them. NCYL speaks for those children and their families, insisting that they receive the benefit of laws that offer them access to safety, shelter, health care, and hope for a better future. On the website, there is a series of publications related to legal issues faced by adolescents and young adults.
Teen Health Initiative
http://www.nyclu.org/thi
The Teen Health Initiative (THI) began in 1997 as a project of the New York Civil Liberties Union's Reproductive Rights Project to remove barriers that prevent young people from accessing critical reproductive health services and information. THI advocates for minors rights to receive confidential reproductive and other health care. The following two reports were developed through THI to better inform both teens and health care providers on the rights of minors to consent to their own medical care:
- Feierman, J., Lieberman, D., & Chu, Y. R. (1997). Teenagers, health care & the law: A guide to the law on minors' rights in New York. Retrievable from http://www.nyclu.org/health1.html
- New York Civil Liberties Union. (2000). Minors' rights to confidential reproductive health care in New York State. Retrievable from http://www.nyclu.org/rrp_minorsrights.html
References
1. Adolescent Health Working Group. (2002). Financing adolescent health services in San Francisco: Quick reference. Retrieved January 15, 2003, from http://www.ahwg.net/resources/Sfadolescenthealthserv.pdf
2. Alvarado, R. (2003, February 7). Personal communication with Center for Health Improvement.
3. American Medical Association. (n.d.). E-5.055 confidential care for minors. Retrieved January 8, 2003, from http://www.ama-assn.org/apps/pf_online/pf_online?f_n=browse&doc=policyfiles/CEJA/E-5.005.HTM
4. American Medical Association. (n.d.). H-60.965 confidential health services for adolescents. Retrieved January 8, 2003, from http://www.ama-assn.org/ama/pub/article/3342-3632.html
5. Boonstra, H., & Nash, E. (2000). Minors and the right to consent to health care. The Guttmacher Report on Public Policy, 3(4), 4-8. Retrieved May 22, 2002, from http://www.healthinschools.org/sbhcs/papers/maintable.asp
6. California Center for Civic Participation and Youth Development. (2002). Majority of California youth want confidential health services and comprehensive sex education. Retrieved June 6, 2002, from http://www.californiacenter.org/pages/about_news_3-17.HTM
7. California Department of Health Services, Office of Family Planning. (n.d.). TeenSMART. Retrieved February 14, 2003, from http://www.dhs.cahwnet.gov/pcfh/ofp/TSO/TeenSMART.htm
8. California Department of Health Services, Office of Family Planning, Family PACT. (2000). Family PACT evaluation – Success in year one. Family PACT Update, 3(3). Retrieved January 28, 2003, from http://www.stdhivtraining.org/pdf/chlamydia_gonorrhea_screening_PACT.pdf
9. California Department of Health Services, Office of Family Planning, Family PACT. (2002). Family PACT overview. Retrieved February 6, 2003, from http://www.dhs.cahwnet.gov/pcfh/ofp/FamPACT/ProgramDescription/FamilyPACTOverview.pdf
10. Cleveland, C. (2003, February 7). Personal communication with Center for Health Improvement.
11. Crosby, M. C., English, A., & Fogel, S. B. (n.d.). Minors' access to reproductive health services in school clinics [Letter]. Retrieved May 20, 2002, from http://www.aclunc.org/reproductive-rights/youth-clinics.html
12. Feierman, J., Lieberman, D., & Chu, Y. R. (1997). Teenagers, health care & the law: A guide to the law on minors' rights in New York. Retrieved May 22, 2002, from http://www.nyclu.org/health1.html
13. Ford, C. A., & English, A. (2002). Limiting confidentiality of adolescent health services: What are the risks? [Editorial]. Journal of the American Medical Association, 288(6). Retrieved Jan 3, 2003, from http://www.ama.assn.org/issues/v288n6/ffull/jed20040.html
14. Get Real About Teen Pregnancy. (n.d.). An overview of teen access to contraception in California. Retrieved May 20, 2002, from http://www.letsgetreal.org/pdfs/Access.pdf
15. Hellerstedt, W. L., Fee, R. M., & Stevens, A. (n.d.). Minor consent and confidentiality and adolescent health in Minnesota. Retrieved December 30, 2002, from http://allaboutkids.umn.edu/cfahad/7286-11.html
16. Henry J. Kaiser Family Foundation. (1999). Teens in denial: Youth at high-risk still think HIV can't happen to them. Retrieved January 7, 2003, from http://www.kff.org/content/1999/1492/pressrelease2.html
17. Kramer, J. S., Blum, M., Greene, D. L., Brindis, C. D., Treat, J. N., Ramirez, A., et al. (2000). Increasing access to family planning services for adolescents: The California Family PACT experience [Abstract #14301]. Retrieved January 28, 2003, from http://apha.confex.com/apha/128am/techprogram/paper_14301.htm
18. Loxterman, J. (1997, July). Adolescent access to confidential health services. Retrieved April 8, 2003, from http://www.advocatesforyouth.org/publications/iag/confhlth.htm
19. National Abortion and Reproductive Rights Action League. (2000). Congress should not give parents a right to access their teenagers' medical records. Retrieved May 22, 2002, from http://www.naral.org/mediaresources/fact/pdfs/medicalrecords.pdf
20. National Center for Youth Law. (2002). California minor consent laws: Which minors can consent for what services and providers' confidentiality obligations. Retrieved May 22, 2002, from http://www.youthlaw.org/MinorConsentandObligations.pdf
21. New York Civil Liberties Union. (2000). Minors' rights to confidential reproductive health care in New York State. Retrieved May 22, 2002, from http://www.nyclu.org/rrp_minorsrights.html
22. Reddy, D. M., Fleming, R., & Swain, C. (2002). Effect of mandatory parental notification on adolescent girls' use of sexual health care services [Abstract]. Journal of the American Medical Association, 288(6), 710-714. Retrieved January 3, 2003, from http://jama.ama-assn.org/issues/v288n6/abs/joc11794.html
Acknowledgements
Rebecca Gudeman, JD, MPA, Staff Attorney, Center for Youth Law, Oakland, CA
Naomi A. Schapiro, RN, MS, CPNP, Assistant Clinical Professor, University of California, San Francisco School of Nursing, San Francisco, CA
Jennifer Sigafoos-Moore, JD, Public Policy Analyst, California Family Health Council, Los Angeles, CA
Marlo Simmons, MPH, Project Coordinator, Adolescent Health Working Group, San Francisco, CA
