Legal issues in caring for adolescent patients

Lori Feldman-Winter, MD Gary N. McAbee, DO, JD

VOL 111 / NO 5 / MAY 2002 / POSTGRADUATE MEDICINE

Adolescents encounter a myriad of attitudes and practice patterns as they seek medical treatment through our increasingly complex healthcare system. Barriers to adequate healthcare delivery to the adolescent population include access, costs, confidentiality, privacy, and the ability to consent to care (1,2). Many of these perceived obstacles are affected by a potpourri of state and federal laws, which may be part of the reason why adolescents seek much of their care in the emergency department (3).

Patients under the age of majority, which is defined by state law and is usually 18 years, are considered minors. In general, these patients cannot give informed consent about healthcare decisions for themselves. Such decisions are the legal responsibility of a parent, a legal guardian, someone who is taking the place of a parent, or the state. An adult designee may give consent to adolescent care such as examinations or procedures if authorized by the custodial parent to do so. When a parent or guardian is unavailable and the need for care is urgent but nonemergent, there is usually a hierarchy of persons from whom consent can be obtained (eg, grandparent, aunt or uncle, adult sibling); consent should be obtained from the highest person on the list who can be contacted. This authority should be communicated in writing and included in the adolescent patient's medical record.

Informed consent implies that the person giving consent understands the benefits and risks of treatment--or of refusing treatment. Therefore, in cases in which language would present an obstacle to informed consent, an authorized interpreter (not a relative) is required by federal law. In families in which the parents are divorced, the noncustodial parent may have the same decision-making rights as the custodial parent. Judicial intervention may be needed when divorced parents disagree on healthcare decisions. Adolescents usually can be treated in emergency situations, since consent is implied, but the medical condition typically must involve an imminent health threat (4).

In certain circumstances, minors may legally consent to their own healthcare. Limited exceptions to the general rule of informed consent vary among states and are defined either by the legislature through the enactment of laws or by judges through case law. Considerations leading to this policy include the long-term ramifications to both individual health and society if adolescents were not permitted to seek care for these conditions. Thus, many states permit minors to seek and consent to care for the following: pelvic examinations, screening for and treatment of sexually transmitted diseases, counseling for and prescribing of contraception (emergency or routine), prenatal care, treatment following sexual assault, substance abuse, and mental health disorders. Most states also have addressed the need for HIV testing, counseling, and treatment, which may involve unique privacy rules. The issue of confidentiality for sexually transmitted diseases may be confounded by any obligation by the physician to inform potentially infected sexual partners.

Less uniform among the states are rules related to abortion, which may require either parental notification or judicial approval in circumstances where parental notification is not desirable or possible. In some states, adolescents can obtain an abortion without parental consent as long as notification has occurred. Physicians should ascertain the specifics of these rules in their state. Scenarios involving very young minors may trigger additional physician responsibilities under child abuse and neglect laws.

Classifications of minors

Certain minors, such as the "emancipated minor" and the "mature minor," are permitted to seek healthcare and give legal informed consent in all health matters. An emancipated minor usually is defined as an adolescent who is married, pregnant, a parent, a member of the military, or self-supporting (ie, living on his or her own without parental control or financial support). Adolescent parents generally make healthcare decisions for themselves as well as their children.

In some states, a mature minor may legally make decisions regarding his or her healthcare even if those decisions conflict with recommendations of parents or healthcare providers. Mature minors, who are legally distinguished from emancipated minors, have sufficient cognitive and psychological maturity to make medical decisions as if they were of legal age of majority. A judicial proceeding is usually required to determine whether an adolescent is mature. States may have laws requiring parental consent for certain procedures (eg, body piercing, tattooing) even for mature minors, and judicial intervention may be warranted if the adolescent and parent disagree about the rights to a procedure.

Assent to healthcare

Federal law generally requires an adolescent's assent to treatment prior to enrollment in a research protocol. Assent requires that an adolescent acknowledge his or her illness and its treatment and express willingness to participate in a research trial. Under the doctrine of assent, the minor has the right to veto a parent's informed consent regarding the adolescent's participation. An adolescent's failure to object should not be construed as assent. Some authorities believe that assent is the appropriate ethical approach to all healthcare decisions involving adolescents (5). Assent may be waived if either the minor is incapable of assent or the research intervention is important to the minor's health and available only in the context of research.

Confidentiality and healthcare access

An adolescent's utilization of a healthcare system is related to his or her perception of confidentiality. Teenagers are more likely to seek healthcare, especially outside an emergency department, if they are assured that the information will be kept private (6). Adolescents most fear the disclosure of confidential information to their parents (7). The options of confidentiality, partial disclosure, and full disclosure should be discussed by the physician and patient, who can decide together what course of action is in the best interest of maintaining health.

Office protocol, such as billing practices, reporting of laboratory results, and telephone reminders of follow-up visits, may affect the ability to provide confidential care to an adolescent patient (8). Ultimately, confidentiality must be balanced against state laws that mandate disclosure of certain health information. Adolescents should be informed that disclosure must occur in certain situations (eg, sexual assault, homicidal or suicidal ideation). The term "sexual assault" has been defined variously under child abuse and neglect laws and may include consensual sexual activity between adolescents and partners 18 years of age and older (9). These laws vary dramatically among states. Adolescents should be counseled if laws require the disclosure of their healthcare information. A physician's inappropriate breach of confidentiality may pose a risk of liability.

HIPAA and privacy rules

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) includes privacy regulations specific to adolescents (10). HIPAA is meant to assure patients that their private health information will be kept confidential and that only limited information will be disclosed for purposes other than patient care. The rules currently allow parents access to the private health information of their unemancipated minor children except in limited circumstances according to state law and physician practice. State laws that afford more privacy protection override HIPAA, while any state law requiring parental notification is not affected by the rules.

Minors who are legally able to seek healthcare without parental consent can preserve the confidentiality of their private health information even if they voluntarily involve a parent in their healthcare decisions. However, a provider may disclose private health information to a parent if the provider believes there is an imminent threat to the minor or another person. In April 2001, Health and Human Services secretary Tommy Thompson announced that the Bush administration might change the rules related to adolescents to permit parental access to all private health information, including information regarding mental health, substance abuse, and abortion. In March 2002, Mr Thompson proposed a clarification to HIPAA that state law governs disclosure to parents. When state laws are silent or unclear, the physician is given discretion to provide or deny parents access to their child's records as long as the practice is consistent with state or other law.

Conclusion

Understanding and applying the rights of adolescent patients in the primary care setting may reduce barriers to effective care. In many states, adolescents may consent to certain medical procedures without parental involvement. The concepts of emancipated minors and mature minors vary among states and are important to understand when assessing legal informed consent. Assent to treatment differs from informed consent yet may be requisite to enrollment in research. Under state child abuse and neglect laws, a physician may be required to report some types of adolescent sexual behaviors.

Laws related to protecting confidentiality as well as mandating disclosure of certain information may affect individual clinical decisions. While adolescents are more likely to seek care when they think their privacy is maintained, state and federal regulations ultimately determine the degree of privacy.

References

1. Klein JD, McNulty M, Flatau CN. Adolescents' access to care: teenagers' self-reported use of services and perceived access to confidential care. Arch Pediatr Adolesc Med 1998;152(7):676-82
2. Ziv A, Boulet JR, Slap GB. Utilization of physician offices by adolescents in the United States. Pediatrics 1999;104(1 Pt 1):35-42
3. Wilson KM, Klein JD. Adolescents who use the emergency department as their usual source of care. Arch Pediatr Adolesc Med 2000;154(4):361-5
4. American Academy of Pediatrics Committee on Pediatric Emergency Medicine. Consent for medical services for children and adolescents. Pediatrics 1993;92(2):290-1
5. Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95(2):314-7
6. Thrall JS, McCloskey L, Ettner SL, et al. Confidentiality and adolescents' use of providers for health information and for pelvic examinations. Arch Pediatr Adolesc Med 2000;154(9):885-92
7. Klein JD, Wilson KM, McNulty M, et al. Access to medical care for adolescents: results from the 1997 Commonwealth Fund Survey of the Health of Adolescent Girls. J Adolesc Health 1999;25(2):120-30
8. Rainey DY, Brandon DP, Krowchuk DP. Confidential billing accounts for adolescents in private practice. J Adolesc Health 2000;26(6):389-91
9. Madison AB, Feldman-Winter L, Finkel M, et al. Commentary: consensual adolescent sexual activity with adult partners--conflict between confidentiality and physician reporting requirements under child abuse laws. Pediatrics 2001;107(2):392-3
10. Health Insurance Portability and Accountability Act of 1996, Pub L No. 104-191, 110 Stat 1936

Web resources on state laws regarding adolescent consent

http://stateserv.hpts.org
State laws regarding adolescent health; updated annually

http://www.ncsl.org
National Conference of State Legislatures; fosters interstate communication of related laws

http://www.healthlaw.org
Policy-related publications on adolescent health

http://www.publicintegrity.org/dtaweb/home.asp
The Center for Public Integrity, a nonprofit organization; Web site links to legislation from all 50 states

http://www.welfareinfo.org/prevention.asp
Resources for preventing adolescent pregnancy, including related laws

Policy statements addressing laws on adolescent health

American Academy of Pediatrics
http://www.aap.org

• Confidentiality in adolescent healthcare. 1989; reaffirmed 1993
• Adolescents and Human Immunodeficiency Virus infection. 2000
• Contraception and adolescents. 1999
• Informed consent, parental permission, and assent in pediatric practice. 1995
• Privacy protection of health information: patient rights and pediatrician responsibilities. 1999
• Consent for medical services for children and adolescents (Committee on Pediatric Emergency Medicine). 1993

American Medical Association, Council for Scientific Affairs
http://www.ama-assn.org
Confidential health services for adolescents. 1993

Society for Adolescent Medicine
http://www.adolescenthealth.org
Confidential healthcare for adolescents. 1997

Dr Feldman-Winter is associate professor of pediatrics, division of adolescent medicine, and Dr McAbee is professor of pediatrics and neurology, department of pediatrics, University of Medicine and Dentistry of New Jersey School of Osteopathic Medicine, Stratford. Correspondence: Lori Feldman-Winter, MD, Department of Pediatrics, UMDNJ-SOM, 40 E Laurel Rd, Suite 100, Stratford, NJ 08084. E-mail: winterlb@umdnj.edu.

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